Warning for moms of GF dc

[Soror]

Considering the fact that most Americans consume a diet deficient in a variety of vitamins and minerals it seems rather silly to specifically go after GF folks. I'm sure there are plenty going GF because it is a fad, however I seriously doubt that those will continue long term,gf it is not an easy choice. I'm sure that there will be a growing backlash against Gf and more dire predictions to come. Of those that eat a GF diet in the longer term most that I have ran across are generally more knowledgeable about nutrition than the general public, which admittedly isn't hard to acomplish. 

[Aspasia]

You sound like me, in reverse.  :)  I don't know what a trace amount of wheat will do to a Celiac, but I know what it can do to my allergic son.  What does a trace amount do to a Celiac, will you share info if I do the same?
 

For a person with celiac disease, gluten triggers the immune system to attack the lining of the small intestine. So, when my ds was diagnosed, the villi that line his small intestine (and absorb nutrients) were severely blunted. The body slowly heals itself when on a strict GF diet. But even a trace amount (I'm told the "safe" amount is about the size of 1/100 of a peanut) can trigger that autoimmune reaction and damage the intestinal villi all over again. If it happens regularly, the symptoms and health risks of celiac disease simply continue indefinitely.

So it's not as scary as anaphylaxis. But the long-term risks of untreated celiac disease are terrifying to me: stunted growth and development, increased risk of various cancers, osteoporosis, etc. What scares me is that we can't really even know for sure if/when he has ingested a trace amount. We will only find out when they do his follow-up blood work if we have been successful at keeping gluten out of his body.

[Crimson Wife]

I'm sure that there will be a growing backlash against Gf

It's already happening. Somehow GF has become the poster child for people ridiculing helicopter parents. Why they don't go after the "every single bite that my child eats must be 100% organic, locally sourced, blah blah blah" food Nazis and instead pick on allergy/intolerance moms is beyond me. Having a single small serving of conventional food isn't going to make a significant difference in the child's health. By contrast, having a single small serving of gluten-containing food can absolutely cause health problems in a child with celiac, wheat allergy, or gluten intolerance.

ETA: And I do think that organic food is healthier than conventional in general. I just don't see a reason to be super-strict about it like I have to be with avoiding gluten and dairy for my little one.

[BrookValley.]

It's already happening. Somehow GF has become the poster child for people ridiculing helicopter parents. Why they don't go after the "every single bite that my child eats must be 100% organic, locally sourced, blah blah blah" food Nazis and instead pick on allergy/intolerance moms is beyond me. Having a single small serving of conventional food isn't going to make a significant difference in the child's health. By contrast, having a single small serving of gluten-containing food can absolutely cause health problems in a child with celiac, wheat allergy, or gluten intolerance.

ETA: And I do think that organic food is healthier than conventional in general. I just don't see a reason to be super-strict about it like I have to be with avoiding gluten and dairy for my little one.

 

Because GF has become a fad diet, that's how. You have a lot of people jumping on the GF bandwagon as the latest, greatest cure-all, so now you've got people not only ridiculing it but, more importantly, not understanding how serious it is for someone who has celiac or an allergy. Like you said, a trace of gluten can cause a real problem with someone with celiac/allergy/intolerance, but you've got a lot of people out there who think GF is just a diet and don't at all understand the underlying health issues for those people for which GF is not just the next miracle diet.

[Ravin]

I mean. Come ON!!! Seriously!?!? Not eating something causes an intolerance?!?

Well, actually, this is true in many people with respect to lactose. In some people, lactase persistence only lasts as long as lactose remains a regular part of the person's diet. Once they are removed, the gene shuts down and doesn't reactivate, resulting in lactose intolerance. I'm fairly sure this happened to me, as I never had trouble with dairy until I stopped drinking milk for several years.

From a standpoint that optimal digestion of wheat gluten, like lactase persistence, depends upon recent (i.e. post-domestication of wheat) mutations, and that the incidence of these mutations in the population is variable, use-it-or-lose-it isn't an outrageous theory.

However, I'd want to see some studies supporting it.

[fraidycat]

This is dangerous. You have no idea how dangerous. This attitude is whay I get about DS illness. This type of mindset would result in his death or him being severely deformed in his hands.

Eating healthy is good but it is not a cure nor does it prevent everything.

But it is your first line of defense, no?

You don't feed your child Pepsi and Doritos three meals/day and believe it's healthy for him? I hope...

Without food, you die. Period. It is required to sustain life. Eat what is good for YOU. That varies person to person. And don't only rely on doctors to figure out what is and isn't good. That's all I'm saying.

[Χά�ων]

But it is your first line of defense, no?

You don't feed your child Pepsi and Doritos three meals/day and believe it's healthy for him? I hope...

Without food, you die. Period. It is required to sustain life. Eat what is good for YOU. That varies person to person. And don't only rely on doctors to figure out what is and isn't good. That's all I'm saying.

No. Not for everything. It does not matter what he eats nothing will heal his body. The continued insistence that eating healthy is THE answer is harmful to those who have diseases that cannot be prevent and cannot be helped. And contrary to whatever you want to believe, there are a lot of such diseases. My son has one. 

[fraidycat]

Well, actually, this is true in many people with respect to lactose. In some people, lactase persistence only lasts as long as lactose remains a regular part of the person's diet. Once they are removed, the gene shuts down and doesn't reactivate, resulting in lactose intolerance. I'm fairly sure this happened to me, as I never had trouble with dairy until I stopped drinking milk for several years.

From a standpoint that optimal digestion of wheat gluten, like lactase persistence, depends upon recent (i.e. post-domestication of wheat) mutations, and that the incidence of these mutations in the population is variable, use-it-or-lose-it isn't an outrageous theory.

However, I'd want to see some studies supporting it.

I've not done as much research on dairy, but I've got a couple half-baked theories on this...

We are mammals. Perhaps the only ones to consume dairy beyond weaning from the mother, AFAIK. So that enzyme is designed purposely to shut down at a young age. And well, we consume dairy that is by it's very nature designed for a baby animal with four stomachs. As far as I know, we only have one. Our digestive process is vastly different than that of a calf that the milk is designed for.

[fraidycat]

No. Not for everything. It does not matter what he eats nothing will heal his body. The continued insistence that eating healthy is THE answer is harmful to those who have diseases that cannot be prevent and cannot be helped. And contrary to whatever you want to believe, there are a lot of such diseases. My son has one.

I'm speaking in generalities here, not targeting any one person or disease. I don't claim to have all the answers. We need to eat healthy** food to survive, so it is still your first (not only, but first) line of defense. It is not a cure-all, but still a necessary and large part of the whole picture.

**varies by person to some degree

[Χά�ων]

I'm speaking in generalities here, not targeting any one person or disease. I don't claim to have all the answers. We need to eat healthy** food to survive, so it is still your first (not only, but first) line of defense. It is not a cure-all, but still a necessary and large part of the whole picture.

**varies by person to some degree

It does not matter. The mindset is the problem. 

[fraidycat]

It does not matter. The mindset is the problem.

We are speaking about two totally different things here so I'm going to let this drop.

[ILiveInFlipFlops]

It is a fad. As someone with a wheat allergy I am thrilled to have more options but disgusted with having to deal with the eye rolls because so many people have latched onto it as a way to cure behavior.

 

GF is also a fad diet for many people who love to jump on the latest wagon.

 

Why are we being so dismissive of people who are looking for ways to improve their health? How will people know what will help them feel better if they don't try things out? Ten years ago I'd never even heard of someone being gluten-free for any reason other than celiac disease. Ten years ago I remember vomiting up bile and stomach acids and wondering why it felt like an elephant was sitting on my chest most days. I had burning reflux and constant, terrible digestive problems and was about to try giving up dairy over it until a friend mentioned letting go of gluten first. If I'd listened to my family, who dismissed it as a fad and told me I'd have nutritional deficiencies if I gave up gluten, or my doctor, who did a blood test and told me I was fine, I'd still be dealing with all of those health issues today. Instead, I "jumped on the bandwagon" and gave up gluten and found my answer. People find that all sorts of dietary changes help them feel better. But how would they ever know what helped if they didn't experiment a bit?

 

People find that all kinds of unusual things make them feel better or resolve issues they may be having, or even issues they didn't know they had. Vitamin D, Vitamin B complex, giving up sugar, giving up caffeine. Why is this any different? When I'm eating a very low gluten diet, I have way more energy, sleep better, and and my depression lifts. I didn't know that would happen--I was just looking to get rid of my reflux and embarrassing gas! 

 

What sounds downright alarming is that anybody believes we should have to "build a tolerance" to a FOOD. Most especially doctors who pass on this "advice" to others.

 

No kidding. 

 

As to the parents who feed their kids a nutritionally deficient GF diet without doing any research into it, I know plenty of parents who feed their kids a fairly nutritionally deficient diet that does include gluten, and that also includes plenty of other crap like preservatives and food dyes and loads of sugar. Why aren't we going after them? 

[Χά�ων]

If someone does not have celiac, a wheat allergy etc how is going off gluten going to improve their health?

[Crimson Wife]

Why are we being so dismissive of people who are looking for ways to improve their health? How will people know what will help them feel better if they don't try things out? Ten years ago I'd never even heard of someone being gluten-free for any reason other than celiac disease. Ten years ago I remember vomiting up bile and stomach acids and wondering why it felt like an elephant was sitting on my chest most days. I had burning reflux and constant, terrible digestive problems and was about to try giving up dairy over it until a friend mentioned letting go of gluten first. If I'd listened to my family, who dismissed it as a fad and told me I'd have nutritional deficiencies if I gave up gluten, or my doctor, who did a blood test and told me I was fine, I'd still be dealing with all of those health issues today. Instead, I "jumped on the bandwagon" and gave up gluten and found my answer. People find that all sorts of dietary changes help them feel better. But how would they ever know what helped if they didn't experiment a bit?

Amen. If I hadn't listened to the "fad" of GF as something that can help autism, we never would've discovered the gluten intolerance that was stunting youngest DD's growth. It didn't make any difference in terms of the autism symptoms, but I am obviously very glad we tried it.

I don't understand all the hostility to doing a trial of GF for 6 months (because it can take that long to get it out of one's system) followed by a challenge. Either it helps or it doesn't. For one of my kids it made a big difference and for the rest of us it made no difference. You'll never know which if you sit around pooh-poohing the suggestion to give it a try.

[ILiveInFlipFlops]

If someone does not have celiac, a wheat allergy etc how is going off gluten going to improve their health?

 

I don't have a wheat allergy, and I haven't been diagnosed with celiac (I did have negative tests). Yet when I eat any gluten-containing food, within an hour I'm spitting acid (which continues off and on for the next two days), and within 6 hours I'm in the bathroom, with gas that continues for the next 24 hours (just lovely, I know--you don't know how glad I was to solve THAT problem :blushing: ).

 

Would you consider that a normal, healthy reaction to gluten? Wouldn't it make sense for me to stop eating the food that causes that reaction? Persistent reflux is highly correlated with incidence of esophageal cancer, so in that one respect alone, not eating gluten improves my health. Alternatively, I could take Prilosec for the rest of my life and keep eating gluten, but Prilosec (and every other acid blocker I've ever tried) has other unpleasant and unhealthful side effects. Which option would you choose: Get on the "bandwagon" or treat the symptoms and not the real problem?

[Unicorn.]

If someone does not have celiac, a wheat allergy etc how is going off gluten going to improve their health?

 

To answer that question, it could be that going gf reduces the amount of carbs they consume, and increases the amount of healthy foods like vegetables.  Just reducing the carbs can cause someone to lose weight, therefore improving their health.  The thing w/ wheat/gluten allergies and intolerance, is that a lot of  people don't know they have one, until they eliminate it from their diet. 

 

 

 

[Mom-ninja.]

Your talking about trying to figure out an actual health issue you experience. If trying a gf diet and it helps then great. I'm talking about people who think going gf will make them lose weight or that switching to gf bread instead of whole wheat bread is healthier.

 

If you have no symptoms from eating gluten there is no point in eating gf.

 

There are many people that think the box of gf pretzels my kid eats is healthier than regular pretzels. No, they're not. The fad diet people are the ones who don't have health issues and start eating gf because gluten is the new buzz word. They don't do any research. Usually they think it will help them lose weight.

 

I think poster here slamming fad dieters are not talking about people who suffer from health problems and are trying to find a solution.

[Spryte]

For a person with celiac disease, gluten triggers the immune system to attack the lining of the small intestine. So, when my ds was diagnosed, the villi that line his small intestine (and absorb nutrients) were severely blunted. The body slowly heals itself when on a strict GF diet. But even a trace amount (I'm told the "safe" amount is about the size of 1/100 of a peanut) can trigger that autoimmune reaction and damage the intestinal villi all over again. If it happens regularly, the symptoms and health risks of celiac disease simply continue indefinitely.

So it's not as scary as anaphylaxis. But the long-term risks of untreated celiac disease are terrifying to me: stunted growth and development, increased risk of various cancers, osteoporosis, etc. What scares me is that we can't really even know for sure if/when he has ingested a trace amount. We will only find out when they do his follow-up blood work if we have been successful at keeping gluten out of his body.

 

Thank you!  That was a great explanation, and I appreciate knowing more about it.  It's not as immediate as anaphylaxis, but the results can be serious.  

 

It's odd, I am diagnosed Celiac, but it came after so many other diagnoses (and it's really among the least of my worries, health-wise) that all I could absorb was "no gluten" and that was easy enough given that DS is wheat allergic.  I can see what happens to me when I eat gluten (I get sick pretty fast - lots of GI issues, as a start, and then colitis, then being unable to digest fruit, then other foods), so I just eat the way DS eats... I think I often feel like a walking encyclopedia on so many other diseases/conditions ... somehow I just couldn't stomach doing the same with Celiac, and adding another entry in the mental encyclopedia set.  Probably sounds weird, but it's where I've been recently, and I just can't wrap my head around it all.  

 

Thanks again, for the excellent, to the point explanation, I am really happy to have read it.  :)

[Aspasia]

Amen. If I hadn't listened to the "fad" of GF as something that can help autism, we never would've discovered the gluten intolerance that was stunting youngest DD's growth. It didn't make any difference in terms of the autism symptoms, but I am obviously very glad we tried it.I don't understand all the hostility to doing a trial of GF for 6 months (because it can take that long to get it out of one's system) followed by a challenge. Either it helps or it doesn't. For one of my kids it made a big difference and for the rest of us it made no difference. You'll never know which if you sit around pooh-poohing the suggestion to give it a try.

I do think it's wise to go to your doctor and be screened for celiac disease BEFORE you do your own GF trial. If a person does have celiac disease, it won't show up on the tests if they've been GF for six months. When I was concerned about ds's symptoms, I can't even count the number of people who suggested that I remove gluten from his diet for a few months and observe the changes. I'm so glad I didn't, because the diagnosis process would have been infinitely more complicated. As it was, our ped requested a blood test, had the positive results two days later, referred us to the gastro who met with us within a week, and we had a biopsy-confirmed diagnosis within a few more weeks (would have been faster if we hadn't gone on vacation during that time). For me, having a completely certain diagnosis was important. This diet is a HUGE burden to carry as a parent and then put on my kid for the rest of his life. How can I do that to him unless I know for sure that he needs to live this way?

I'm just saying, doctors don't know everything, and I was blown off by quite a few before someone finally listened to me and found answers, but sometimes it's a good idea to work WITH them.

To answer that question, it could be that going gf reduces the amount of carbs they consume, and increases the amount of healthy foods like vegetables. Just reducing the carbs can cause someone to lose weight, therefore improving their health. The thing w/ wheat/gluten allergies and intolerance, is that a lot of people don't know they have one, until they eliminate it from their diet.

The idea of non-celiac gluten intolerance or sensitivity is actually pretty controversial in medical circles. Most of what I've read from researchers is that most people would feel better on a GF diet. They point out that eating GF forces you to give up most fast food, most processed food, etc. It forces you to eat fresh, whole foods, so of course people who do it feel better and see a change in the way their body functions. I'm not saying I'm of that opinion. I'm not a doctor or a researcher, and some of them ARE finding evidence to support non-celiac gluten sensitivity, but it's something to think about.

[fraidycat]

Your talking about trying to figure out an actual health issue you experience. If trying a gf diet and it helps then great. I'm talking about people who think going gf will make them lose weight or that switching to gf bread instead of whole wheat bread is healthier.

If you have no symptoms from eating gluten there is no point in eating gf.

There are many people that think the box of gf pretzels my kid eats is healthier than regular pretzels. No, they're not. The fad diet people are the ones who don't have health issues and start eating gf because gluten is the new buzz word. They don't do any research. Usually they think it will help them lose weight.

I think poster here slamming fad dieters are not talking about people who suffer from health problems and are trying to find a solution.

The symptoms from eating gluten are so vast and varied, though that many do not equate them to gluten/chronic inflammation. It's not just GI symptoms.

It's anger, depression, headaches, dizziness, joint pain, acne, eczema, psoriasis, gas, bloating, sinus issues, asthma. Just to name a FEW. If anyone has any one, or several of the above or any other myriad "symptoms", a gluten challenge MAY help them. They won't know unless they try. But, we are so accustomed to aches and pains, drippy noses during allergy season, etc. that we just keep on keeping on.

[Χά�ων]

The idea of non-celiac gluten intolerance or sensitivity is actually pretty controversial in medical circles. Most of what I've read from researchers is that most people would feel better on a GF diet. They point out that eating GF forces you to give up most fast food, most processed food, etc. It forces you to eat fresh, whole foods, so of course people who do it feel better and see a change in the way their body functions. I'm not saying I'm of that opinion. I'm not a doctor or a researcher, and some of them ARE finding evidence to support non-celiac gluten sensitivity, but it's something to think about.

This is what I have observed with those trying out the diet. but after a few months they just buy the fast version of the food and well...

[Unicorn.]

{snip}

The idea of non-celiac gluten intolerance or sensitivity is actually pretty controversial in medical circles. Most of what I've read from researchers is that most people would feel better on a GF diet. They point out that eating GF forces you to give up most fast food, most processed food, etc. It forces you to eat fresh, whole foods, so of course people who do it feel better and see a change in the way their body functions. I'm not saying I'm of that opinion. I'm not a doctor or a researcher, and some of them ARE finding evidence to support non-celiac gluten sensitivity, but it's something to think about.

 

Speaking to the researchers re: forcing people to give up fast food, processed food, and eat more whole foods...  but they don't have to give those up.  Those researchers really have no clue.   They don't want something to "be" so they try and explain it away. 
 

[ChocolateReignRemix]

The symptoms from eating gluten are so vast and varied, though that many do not equate them to gluten/chronic inflammation. It's not just GI symptoms.

It's anger, depression, headaches, dizziness, joint pain, acne, eczema, psoriasis, gas, bloating, sinus issues, asthma. Just to name a FEW. If anyone has any one, or several of the above or any other myriad "symptoms", a gluten challenge MAY help them. They won't know unless they try. But, we are so accustomed to aches and pains, drippy noses during allergy season, etc. that we just keep on keeping on.

 

 

Can you link me to research on GF being a root cause of these issues?

[fraidycat]

Can you link me to research on GF being a root cause of these issues?

Not right now. I didn't save links, and don't feel like searching. Maybe some day.

I can recommend three books that I've read with lots of science in them:

Death by Food Pyramid
Grain Brain
The Primal Blueprint

I'm sure there are many others.

For anecdotal evidence, just search the gluten threads right here on WTM.

And there's always Google.

[ChocolateReignRemix]

Not right now. I didn't save links, and don't feel like searching. Maybe some day.

I can recommend three books that I've read with lots of science in them:

Death by Food Pyramid
Grain Brain
The Primal Blueprint

I'm sure there are many others.

For anecdotal evidence, just search the gluten threads right here on WTM.

And there's always Google.

 

What I am finding indicates there is evidence that gluten sensitivity exists, but the research thus far has not been able to demonstrate a direct link or put forth a strong theory on why gluten would be the culprit behind such a wide variety of ailments.

 

I don't accept anecdata and would really prefer something with actual research.
 

[fraidycat]

What I am finding indicates there is evidence that gluten sensitivity exists, but the research thus far has not been able to demonstrate a direct link or put forth a strong theory on why gluten would be the culprit behind such a wide variety of ailments.

I don't accept anecdata and would really prefer something with actual research.

Gluten sensitivity = inflammation. Inflammation, especially chronic = all kinds of crud.

You could remove gluten entirely and search chronic inflammation and symptoms. That'll tell you a lot. From there you can search the causes of inflammation. Gluten is only one of many.

The science/research is in the books I recommended. You don't have to read them, but you asked so I pointed you to where it could be found. It's up to you what you do with the info now.

[Χά�ων]

Gluten sensitivity = inflammation. Inflammation, especially chronic = all kinds of crud.

The science/research is in the books I recommended. You don't have to read them, but you asked so I pointed you to where it could be found. It's up to you what you do with the info now.

A load of dung. From the mom of a child with a chronic illness that includes inflamation of the chronic variety. It ain't gluten.

[ChocolateReignRemix]

Gluten sensitivity = inflammation. Inflammation, especially chronic = all kinds of crud.

You could remove gluten entirely and search chronic inflammation and symptoms. That'll tell you a lot. From there you can search the causes of inflammation. Gluten is only one of many.

The science/research is in the books I recommended. You don't have to read them, but you asked so I pointed you to where it could be found. It's up to you what you do with the info now.

 

Well I read the reviews for those books and they don't seem particularly unbiased or research heavy.  The peer reviewed research I can locate is still new and has not managed to connect the dots that some think exist.

 

I agree that gluten can certainly be one of many sources for inflammation.  That is why I would not recommend going GF as the first step for someone with one of the many possible symptoms of gluten sensitivity. (Of course I personally shouldn't be making recommendations to anyone as I don't have a medical license.)

[fraidycat]

A load of dung. From the mom of a child with a chronic illness that includes inflamation of the chronic variety. It ain't gluten.

I sense you are trying to pick a fight here. I'm not biting. Have a good night.

[fraidycat]

Well I read the reviews for those books and they don't seem particularly unbiased or research heavy. The peer reviewed research I can locate is still new and has not managed to connect the dots that some think exist.

I agree that gluten can certainly be one of many sources for inflammation. That is why I would not recommend going GF as the first step for someone with one of the many possible symptoms of gluten sensitivity. (Of course I personally shouldn't be making recommendations to anyone as I don't have a medical license.)

The books are not un-biased as far as dietary recommendations, I agree. However, they do include a lot of research and footnotes. The footnotes could point you in the direction you're wanting to go. You don't have to agree with their conclusions to use them as research resources to the studies that have been done.

[kitten18]

A load of dung. From the mom of a child with a chronic illness that includes inflamation of the chronic variety. It ain't gluten.

For your child. It could be for someone else.

[Catwoman]

Fortunately, no one in our little family has any need to be gf, and as such, I have no intentions of trying to avoid gluten in our diet.

But... you can bet that if any of us had symptoms that might be related to having gluten in our diets, I would definitely make the change and see if it helped.

I don't think anyone here has recommended that everyone should adopt a gluten-free lifestyle. I think they're just providing information that has worked for them in the hope that they might be able to help others who might have similar symptoms and not realize that they could be gluten-related. Often, I have found that reading about others' personal experiences has led to some pretty big "light bulb moments" for me, so I try to be as openminded as possible in these health and nutrition-related threads.

[ILiveInFlipFlops]

If you have no symptoms from eating gluten there is no point in eating gf.

 

 

How do people know they're not having symptoms until they try going without it? When I gave up gluten, guess what I discovered? The horrible cramps that I was having each month with my period disappeared. My period went from seven days (three of them miserable) to four-five, with only one heavy day. I thought that was my normal period--it had been that way since I had my second baby. Women with endometriosis have found that going on a low-carb diet reduces the symptoms they deal with monthly. If people don't experiment with "loads of dung" like this, how would anyone discover solutions for things that medical science hasn't been able to help them fix? What do people have to lose? Maybe they won't lose any weight...but maybe they will. Maybe your GF pretzels aren't any healthier for them...but maybe they'll discover a sensitivity they didn't even know they had. I just don't see being so negative about people trying to make positive health changes. 

 

 

This is what I have observed with those trying out the diet. but after a few months they just buy the fast version of the food and well...

 

So what? Who cares? If they tried to give up gluten (or dairy, or soy, or caffeine, or sugar) and it didn't work for them, what have they lost? 

 

 

Can you link me to research on GF being a root cause of these issues?

 

There are lots of home/folk/herbal/homeopathic/food-related remedies out there that work for people in spite of not having significant research to back up their claims. I took an herbal supplement that hardly anyone has ever heard of, and it saved my marriage and possibly my mental health. It brought me back to my family and eliminated the daily rage I was experiencing. Are you really going to say that because there are only a few journal articles discussing this supplement's possible efficacy, that it didn't actually work for me after all? Can you really tell me that the disappearance of the significant physical symptoms I was experiencing when I gave up gluten didn't actually happen, and that I'm really having reflux and intestinal distress on a daily basis--I just don't realize it? Maybe the coconut oil I take on a daily basis doesn't actually help me focus better after all. A lack of research does not equal a lack of effectiveness. It just equals a lack of research.

 

 

A load of dung. From the mom of a child with a chronic illness that includes inflamation of the chronic variety. It ain't gluten.

 

A well-reasoned argument. No, giving up gluten may not help your son. That doesn't mean it doesn't help others.

[JumpyTheFrog]

Gluten sensitivity = inflammation. Inflammation, especially chronic = all kinds of crud.

I think a better way to say this is that gluten sensitivity leads to inflammation. That doesn't mean that all inflammation is caused by food intolerances.

Queen Goddess of the Deep, it sounds like over the years you've had many people suggest things they thought would cure your son. Them being wrong doesn't negate that many people who eliminate certain foods often find that avoiding those foods reduces or eliminates symptoms. People posting here in support of people doing elimination diets is not a judgement of your son's treatment or condition. Nobody is suggesting going GF will fix him.

[fraidycat]

I do tend to take shortcuts when posting from my tablet or phone, I probably should have gone to my computer with a real keyboard for this one. I could have written half a novel. ;) Thank you Hoppy for clarifying my statement.

[Catwoman]

How do people know they're not having symptoms until they try going without it?

Ummm... maybe because they feel fine? :confused:

Maybe your GF pretzels aren't any healthier for them...but maybe they'll discover a sensitivity they didn't even know they had. I just don't see being so negative about people trying to make positive health changes. 

Well, maybe there are those who are negative about people trying to make positive health changes, but if going gluten-free is working for you, I think it's wonderful.

But when you make a statement like, "How do they know they're not having symptoms until they try going without," it comes across as a little fanatical and extreme.

I know you don't mean it that way, and that you're only trying to help others, but I don't know if you realize that you're sounding as though everyone should try going gluten-free, just in case maybe, possibly they're having symptoms they don't even know about, and going gluten-free could fix it for them.

I think if someone has a health issue they're having trouble alleviating, and they learn that going gluten-free (or eliminating dairy products, or eating low-fat, or eating high-fat, or going low carb, or whatever) might help them, I'm all in favor of giving it a try. Obviously, if there's a real health issue and it's not just a minor discomfort in an otherwise healthy person, I would suggest first talking with a medical professional to make sure whatever they want to try is physically safe for them, but otherwise, I'd figure it was worth a shot. If the worst thing that can happen is that it doesn't work, have at it and hope for the best.

But it sounds like you're suggesting that people who are feeling perfectly fine should try going gluten-free because it might reveal that they are having some sort of mystery symptoms that they never even realized they had... and that makes no sense to me whatsoever.

I'm really hoping I completely misinterpreted your post -- and it's entirely possible because it's after 2:30am and I think I'm starting to get a little loopy. I probably should have gotten off the computer an hour ago! :)


 
 

 

 

 

 

[Catwoman]

Queen Goddess of the Deep, it sounds like over the years you've had many people suggest things they thought would cure your son. Them being wrong doesn't negate that many people who eliminate certain foods often find that avoiding those foods reduces or eliminates symptoms. People posting here in support of people doing elimination diets is not a judgement of your son's treatment or condition. Nobody is suggesting going GF will fix him.

I think part of the problem here is that none of us knows any of the details about Queen's son's illness, so many of us have made well-intentioned suggestions that she knows won't work.

That said, I fully respect her right to privacy when it comes to her ds's health, because as I understand it, his illness is rare enough that if she discusses it, she could easily be recognized by many of the people she knows in her real life, and I'm guessing that she would like to protect her privacy. That makes perfect sense to me.

OTOH, it does make some discussions difficult, because when people hear that her ds has an illness, they quite naturally want to try to help and to offer suggestions, so I can definitely understand why they might get frustrated if it seems like she's rejecting their ideas without really considering them.

It sounds like Queen is in a tough spot when it comes to her son's health. :(

[ILiveInFlipFlops]

Ummm... maybe because they feel fine? :confused:


Well, maybe there are those who are negative about people trying to make positive health changes, but if going gluten-free is working for you, I think it's wonderful.

But when you make a statement like, "How do they know they're not having symptoms until they try going without," it comes across as a little fanatical and extreme.

I know you don't mean it that way, and that you're only trying to help others, but I don't know if you realize that you're sounding as though everyone should try going gluten-free, just in case maybe, possibly they're having symptoms they don't even know about, and going gluten-free could fix it for them.

I think if someone has a health issue they're having trouble alleviating, and they learn that going gluten-free (or eliminating dairy products, or eating low-fat, or eating high-fat, or going low carb, or whatever) might help them, I'm all in favor of giving it a try. Obviously, if there's a real health issue and it's not just a minor discomfort in an otherwise healthy person, I would suggest first talking with a medical professional to make sure whatever they want to try is physically safe for them, but otherwise, I'd figure it was worth a shot. If the worst thing that can happen is that it doesn't work, have at it and hope for the best.

But it sounds like you're suggesting that people who are feeling perfectly fine should try going gluten-free because it might reveal that they are having some sort of mystery symptoms that they never even realized they had... and that makes no sense to me whatsoever.

I'm really hoping I completely misinterpreted your post -- and it's entirely possible because it's after 2:30am and I think I'm starting to get a little loopy. I probably should have gotten off the computer an hour ago! :)


 
 

 

 

 

 

 

Oh, for pete's sake. I don't think anyone should go gluten-free or feed their child a gluten-free diet if they don't care to or if they feel fine. But talk to enough people who HAVE gone GF (or soy-free or dairy-free or grain-free or caffeine-free or chemical-free or what have you) for any number of reasons and you'll start to hear stories about how they felt so much better and they didn't even realize that they were feeling achy or fatigued, or how suddenly that annoying digestive complaint they were having went away. My point is that sometimes vague malaise can come on slowly until it's someone's new normal, and they don't realize it until their diet is somehow shaken up. Or something they think is just "how things are," like my periods (doesn't everyone have cramps, after all?) turns out to be alleviated by a dietary change. I just don't see how that makes them sheeple. We're castigating people who jump on some kind of fad-diet bandwagon, but maybe they're simply seeing if giving up something that bothers many other people might unexpectedly help them too. People also say this after they've given up sugar--they felt so much better, their skin cleared up, and so on. Why does no one think that's weird? After all, I've given up sugar too and felt no different. I went back to eating it and had no problems then either. Does that mean everyone who does give up sugar is deluded?

 

I'm not fanatical. I'm irritated by people who make blanket statements about other people's health issues and how they treat them--as irritated as QGOTD seems to be, coincidentally. I have no doubt that QGOTD has done every inch of the legwork regarding her son's illness and knows what he needs and what he doesn't. I don't see where a single person in this thread talked about how she should treat his issues or given her medical advice specifically. I do, however, see plenty of disrespect thrown the way of people trying to make changes for their own health, including people who have seen these changes make a difference in the way they feel and the life they live.   

 

I have no vested interest in what anyone else eats, I promise. I'm not selling anything or manufacturing gluten-free snacks or writing a diet book on the side. I'm simply sharing my experience and the experience of people around me. And to hear my own experiences and those of people I care about called things like a load of dung and anecdata, and doubted as if we're imagining things does rankle quite a bit. But I'm the fanatical one. 

[Χά�ων]

How do people know they're not having symptoms until they try going without it? When I gave up gluten, guess what I discovered? The horrible cramps that I was having each month with my period disappeared. My period went from seven days (three of them miserable) to four-five, with only one heavy day. I thought that was my normal period--it had been that way since I had my second baby. Women with endometriosis have found that going on a low-carb diet reduces the symptoms they deal with monthly. If people don't experiment with "loads of dung" like this, how would anyone discover solutions for things that medical science hasn't been able to help them fix? What do people have to lose? Maybe they won't lose any weight...but maybe they will. Maybe your GF pretzels aren't any healthier for them...but maybe they'll discover a sensitivity they didn't even know they had. I just don't see being so negative about people trying to make positive health changes. 

 

So what? Who cares? If they tried to give up gluten (or dairy, or soy, or caffeine, or sugar) and it didn't work for them, what have they lost? 

 

There are lots of home/folk/herbal/homeopathic/food-related remedies out there that work for people in spite of not having significant research to back up their claims. I took an herbal supplement that hardly anyone has ever heard of, and it saved my marriage and possibly my mental health. It brought me back to my family and eliminated the daily rage I was experiencing. Are you really going to say that because there are only a few journal articles discussing this supplement's possible efficacy, that it didn't actually work for me after all? Can you really tell me that the disappearance of the significant physical symptoms I was experiencing when I gave up gluten didn't actually happen, and that I'm really having reflux and intestinal distress on a daily basis--I just don't realize it? Maybe the coconut oil I take on a daily basis doesn't actually help me focus better after all. A lack of research does not equal a lack of effectiveness. It just equals a lack of research.

 

A well-reasoned argument. No, giving up gluten may not help your son. That doesn't mean it doesn't help others.

 

Correlation does not imply causation. My periods changed when I turned 31. Does that mean everyone will have the same change when they turn 31? No.

 

I think a better way to say this is that gluten sensitivity leads to inflammation. That doesn't mean that all inflammation is caused by food intolerances.

Queen Goddess of the Deep, it sounds like over the years you've had many people suggest things they thought would cure your son. Them being wrong doesn't negate that many people who eliminate certain foods often find that avoiding those foods reduces or eliminates symptoms. People posting here in support of people doing elimination diets is not a judgement of your son's treatment or condition. Nobody is suggesting going GF will fix him.

Nobody is suggesting it here in this thread, but elsewhere it has been pimped as THE cure all for whatever he has. Those blanket statements are BS and dangerous. 

 

Ummm... maybe because they feel fine? :confused:


Well, maybe there are those who are negative about people trying to make positive health changes, but if going gluten-free is working for you, I think it's wonderful.

But when you make a statement like, "How do they know they're not having symptoms until they try going without," it comes across as a little fanatical and extreme.

I know you don't mean it that way, and that you're only trying to help others, but I don't know if you realize that you're sounding as though everyone should try going gluten-free, just in case maybe, possibly they're having symptoms they don't even know about, and going gluten-free could fix it for them.

I think if someone has a health issue they're having trouble alleviating, and they learn that going gluten-free (or eliminating dairy products, or eating low-fat, or eating high-fat, or going low carb, or whatever) might help them, I'm all in favor of giving it a try. Obviously, if there's a real health issue and it's not just a minor discomfort in an otherwise healthy person, I would suggest first talking with a medical professional to make sure whatever they want to try is physically safe for them, but otherwise, I'd figure it was worth a shot. If the worst thing that can happen is that it doesn't work, have at it and hope for the best.

But it sounds like you're suggesting that people who are feeling perfectly fine should try going gluten-free because it might reveal that they are having some sort of mystery symptoms that they never even realized they had... and that makes no sense to me whatsoever.

I'm really hoping I completely misinterpreted your post -- and it's entirely possible because it's after 2:30am and I think I'm starting to get a little loopy. I probably should have gotten off the computer an hour ago! :)

 

Catwoman nailed it.

 

I think part of the problem here is that none of us knows any of the details about Queen's son's illness, so many of us have made well-intentioned suggestions that she knows won't work.

That said, I fully respect her right to privacy when it comes to her ds's health, because as I understand it, his illness is rare enough that if she discusses it, she could easily be recognized by many of the people she knows in her real life, and I'm guessing that she would like to protect her privacy. That makes perfect sense to me.

OTOH, it does make some discussions difficult, because when people hear that her ds has an illness, they quite naturally want to try to help and to offer suggestions, so I can definitely understand why they might get frustrated if it seems like she's rejecting their ideas without really considering them.

It sounds like Queen is in a tough spot when it comes to her son's health. :(

Catwomen is correct. It is very rare and as I have been open about him speed skating and to my knowledge he is the ONLY speed skater with this illness.

I take suggestions from his team of medical professionals about his over all health. 

Oh, for pete's sake. I don't think anyone should go gluten-free or feed their child a gluten-free diet if they don't care to or if they feel fine. But talk to enough people who HAVE gone GF (or soy-free or dairy-free or grain-free or caffeine-free or chemical-free or what have you) for any number of reasons and you'll start to hear stories about how they felt so much better and they didn't even realize that they were feeling achy or fatigued, or how suddenly that annoying digestive complaint they were having went away. My point is that sometimes vague malaise can come on slowly until it's someone's new normal, and they don't realize it until their diet is somehow shaken up. Or something they think is just "how things are," like my periods (doesn't everyone have cramps, after all?) turns out to be alleviated by a dietary change. I just don't see how that makes them sheeple. We're castigating people who jump on some kind of fad-diet bandwagon, but maybe they're simply seeing if giving up something that bothers many other people might unexpectedly help them too. People also say this after they've given up sugar--they felt so much better, their skin cleared up, and so on. Why does no one think that's weird? After all, I've given up sugar too and felt no different. I went back to eating it and had no problems then either. Does that mean everyone who does give up sugar is deluded?

 

I'm not fanatical. I'm irritated by people who make blanket statements about other people's health issues and how they treat them--as irritated as QGOTD seems to be, coincidentally. I have no doubt that QGOTD has done every inch of the legwork regarding her son's illness and knows what he needs and what he doesn't. I don't see where a single person in this thread talked about how she should treat his issues or given her medical advice specifically. I do, however, see plenty of disrespect thrown the way of people trying to make changes for their own health, including people who have seen these changes make a difference in the way they feel and the life they live.   

 

I have no vested interest in what anyone else eats, I promise. I'm not selling anything or manufacturing gluten-free snacks or writing a diet book on the side. I'm simply sharing my experience and the experience of people around me. And to hear my own experiences and those of people I care about called things like a load of dung and anecdata, and doubted as if we're imagining things does rankle quite a bit. But I'm the fanatical one. 

In this thread specifically addressed to me? No. Has it be implied that how do I know if I haven't tried and that it helps others therefore...

If so many people have gone gluten free AND if there are really those numbers then where is the evidence? 

Correlation does not imply causation

[Pawz4me]

But talk to enough people who HAVE gone GF (or soy-free or dairy-free or grain-free or caffeine-free or chemical-free or what have you) for any number of reasons and you'll start to hear stories about how they felt so much better and they didn't even realize that they were feeling achy or fatigued, or how suddenly that annoying digestive complaint they were having went away.

 

I'm old enough to remember when people made similar miraculous cure claims when they went high carb/low fat.

 

The placebo effect can be a very powerful thing.

[unsinkable]

I think part of the problem here is that none of us knows any of the details about Queen's son's illness. (

"Only The Shadow knows..."

[Ravin]

If one does an elimination trial on oneself, and gets good results, and reintroduces, thus bringing on a reaction, causation for that person is pretty well established for that person. It's unlikely to be just correlation. And nono light is shed on the "why" it makes a difference. But the conclusion is rational for that individual.

What it isn't is a peer reviewed double-blind study with careful methodology to screen the influences of other factors. That doesn't mean that from the standpoint of looking at an individual's overall health, diet should be ignored unless published studies point to something. As long as overall nutritional needs are met and it doesn't reduce quality of life subjectively, there's nothing to lose by trying.

[Catwoman]

Oh, for pete's sake. I don't think anyone should go gluten-free or feed their child a gluten-free diet if they don't care to or if they feel fine. But talk to enough people who HAVE gone GF (or soy-free or dairy-free or grain-free or caffeine-free or chemical-free or what have you) for any number of reasons and you'll start to hear stories about how they felt so much better and they didn't even realize that they were feeling achy or fatigued, or how suddenly that annoying digestive complaint they were having went away. My point is that sometimes vague malaise can come on slowly until it's someone's new normal, and they don't realize it until their diet is somehow shaken up. Or something they think is just "how things are," like my periods (doesn't everyone have cramps, after all?) turns out to be alleviated by a dietary change. I just don't see how that makes them sheeple. We're castigating people who jump on some kind of fad-diet bandwagon, but maybe they're simply seeing if giving up something that bothers many other people might unexpectedly help them too. People also say this after they've given up sugar--they felt so much better, their skin cleared up, and so on. Why does no one think that's weird? After all, I've given up sugar too and felt no different. I went back to eating it and had no problems then either. Does that mean everyone who does give up sugar is deluded?

I'm not fanatical. I'm irritated by people who make blanket statements about other people's health issues and how they treat them--as irritated as QGOTD seems to be, coincidentally. I have no doubt that QGOTD has done every inch of the legwork regarding her son's illness and knows what he needs and what he doesn't. I don't see where a single person in this thread talked about how she should treat his issues or given her medical advice specifically. I do, however, see plenty of disrespect thrown the way of people trying to make changes for their own health, including people who have seen these changes make a difference in the way they feel and the life they live.

I have no vested interest in what anyone else eats, I promise. I'm not selling anything or manufacturing gluten-free snacks or writing a diet book on the side. I'm simply sharing my experience and the experience of people around me. And to hear my own experiences and those of people I care about called things like a load of dung and anecdata, and doubted as if we're imagining things does rankle quite a bit. But I'm the fanatical one.

Wow, it seems like my post really offended you. I'm sorry!!! :(

I wasn't making fun of you for being gluten-free and I did say that I knew you were trying to help others by sharing what worked for you. I never said that I thought people who tried a gluten-free diet were wrong to do so. I was honestly just trying to understand your previous post, and I said that I was worried that I'd misinterpreted you.

Again, I really didn't mean to offend you. It seems like we may have both misinterpreted each other's intentions here.

[Crimson Wife]

If so many people have gone gluten free AND if there are really those numbers then where is the evidence?

As someone who follows autism research closely, there is a LOT more money available for pharmaceutical research than there is for research on nutrition. Sadly, a lot of the research on nutritional supplements that is being done use special pharmaceutical-grade supplements that can be patented and then sold for $$$$.

For example, Stanford is currently holding a research trial on N-acetyl-cysteine for treating autism. But is the researcher using regular NAC that can be purchased inexpensively OTC? Of course not! No, he's using a pharmaceutical-grade version of NAC that will be available by prescription only like Vayarin is for ADHD (Vayarin is just omega 3's plus phosphatidylserine).

Follow the money trail...

[fraidycat]

As someone who follows autism research closely, there is a LOT more money available for pharmaceutical research than there is for research on nutrition. Sadly, a lot of the research on nutritional supplements that is being done use special pharmaceutical-grade supplements that can be patented and then sold for $$$$.

For example, Stanford is currently holding a research trial on N-acetyl-cysteine for treating autism. But is the researcher using regular NAC that can be purchased inexpensively OTC? Of course not! No, he's using a pharmaceutical-grade version of NAC that will be available by prescription only like Vayarin is for ADHD (Vayarin is just omega 3's plus phosphatidylserine).

Follow the money trail...

I'm glad you posted this because I was going to post something similar, but probably little more controversial in tone. But then, I figured I'd be accused of being a conspiracy theorist load of dung instead of just a regular load. :p

[Crimson Wife]

I don't think it's a conspiracy, but a factor of who has the deep pockets to fund expensive research trials. It makes much more financial sense to shell out the money to run the trials on something patentable rather than non-patentable. The government and charitites like Autism Speaks have some money to fund research on things like nutrition, but that pales in comparison to the amount that pharmaceutical and biotech companies have to spend.

[fraidycat]

I don't think it's a conspiracy either. I am, however, speaking from experience - I've been accused before when discussing similar topics re: research vs. funding and government funding/lobbyist dollars/subsidies. I don't want to make this thread political so I will just note that it's not the tiny little organic farmers and free-range ranchers who've got the clout when it comes to what the government will and will not "recommend" for "our own good". Money talks.

[ILiveInFlipFlops]

Wow, it seems like my post really offended you. I'm sorry!!! :(

I wasn't making fun of you for being gluten-free and I did say that I knew you were trying to help others by sharing what worked for you. I never said that I thought people who tried a gluten-free diet were wrong to do so. I was honestly just trying to understand your previous post, and I said that I was worried that I'd misinterpreted you.

Again, I really didn't mean to offend you. It seems like we may have both misinterpreted each other's intentions here.

 

I'm not offended in the least. I'm annoyed at the defense of the hypocrisy and rampant judgment in this thread. I tend to forget how many people have the "If it hasn't happened to me, it must be imaginary" mindset and the assumption that we're too stupid to know how to care for our own health properly. I also tend to forget why I rarely participate here anymore. It's a good reminder. I don't need to spend so much time online anyway.

 

I don't think it's a conspiracy either. I am, however, speaking from experience - I've been accused before when discussing similar topics re: research vs. funding and government funding/lobbyist dollars/subsidies. I don't want to make this thread political so I will just note that it's not the tiny little organic farmers and free-range ranchers who've got the clout when it comes to what the government will and will not "recommend" for "our own good". Money talks.

 

Oh, pshaw. I hope you have the research to back that up!

[fraidycat]

Oh, pshaw. I hope you have the research to back that up!

:P

[Word Nerd]

I think there need to be more reports telling people that gluten-free does not mean healthier across the board. Most people do not have celiac or wheat allergies/intolerance, despite the current GF craze.