Warning for moms of GF dc

[NASDAQ]

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.

 

Not correct. Some human beings (iirc somewhere in the 30-40% of the human population) have a genetic mutation that enables them to consume dairy for life. At least two versions of this mutation have been discovered, one amongst northern Europeans and one among certain Africans. Because these mutations are concentrated in certain populations, a significant percentage of people living in North America are adult lactose tolerant. Whether or not they have one stomach. And ruminants need the multiple stomachs to derive maximum benefit from digesting cellulose, not lactose.

[fraidycat]

Oh ok, thanks. That answers my question.

[kitten18]

Weird that a thread about being GF has taken to bashing those who are not GF for the "right" reasons.

[Unicorn.]

I just want mine with no butter - a treat in our house.  DH and both boys seem to like popcorn with their butter. Gooey mess.

 

Butter on popcorn is just nasty!

 

Dang, now I want popcorn.

[nmoira]

Roundup Ready wheat is not commercially available at this time. It is currently being tested (again, the first trial tests were ended around a decade ago) but has never been marketed in any country. However there are other Roundup Ready crops on the market (I *think* corn and soybeans are the most common.)

Some GM wheat was discovered in an Oregon field in the last year or two. I don't think the source was ever discovered (and no other contaminated fields were found), but there were swift and serious consequences with respect to our wheat export market even though the farmer reported it and the wheat was destroyed.

GM wheat will not be coming any time soon.

[ChocolateReignRemix]

Some GM wheat was discovered in an Oregon field in the last year or two. I don't think the source was ever discovered (and no other contaminated fields were found), but there were swift and serious consequences with respect to our wheat export market.

GM wheat will not be coming any time soon.

 

That happened last year.  The last I heard they still have not determined the source.  And yes, the reaction was swift and Monsanto faced some immediate lawsuits for damages from those affected.

 

That aside, GMO wheat would still be a decade away based on where they are in the trials.

[fraidycat]

Not correct. Some human beings (iirc somewhere in the 30-40% of the human population) have a genetic mutation that enables them to consume dairy for life. At least two versions of this mutation have been discovered, one amongst northern Europeans and one among certain Africans. Because these mutations are concentrated in certain populations, a significant percentage of people living in North America are adult lactose tolerant. Whether or not they have one stomach. And ruminants need the multiple stomachs to derive maximum benefit from digesting cellulose, not lactose.

Thanks. Like I said, I've not done the research, so my theories were only half-baked. LOL I appreciate the info.

[NASDAQ]

No worries. its kind of interesting stuff, lactose intolerance. Iirc it's not that old a mutation either. But most people are going to become lactose intolerant whether they drink milk or not.

There is some evidence though that early introduction of potential allergens reduces allergies

http://www.ncbi.nlm.nih.gov/m/pubmed/19000582/

[Mom-ninja.]

In another instance, when I used the example of my period changing after giving up gluten, I was told that sometimes our bodies just change, that the placebo effect is strong, and that people who really have celiac have WORSE periods after going GF (when I specifically said I tested negative for celiac and don't believe I have it). In effect, these people are telling me that I am either crazy, stupid, or lying. No?

 

 

So are you saying that when I go into a restaurant and ask for my burger with no bun and a salad instead of steak fries because I can't have gluten, I am one of those people responsible for risking your child's life because what I deal with is not the same? Where does that leave me? 

 

In reference to the first bolded above.....no. Not anywhere did I say or indicate that you are crazy, stupid, or lying. Nope. Not anywhere in my posts. I shared my menstruation experience simply to show that if going gf may not improve menstruation problems but may actually make them worse. Your experience of going gf was to have improved periods. I think that's great. I *wish* that had happened to me. It didn't and the reason is because I have celiac. I know you don't so that may be why you had a positive experience. I simply wanted you to know that not all women who go gf will have a positive experience in regards to their cycles.

 

I guess because a friend of mine goes around trying to convince everyone she talks to to give up gluten. She raves about the benefits she experiences. The when the same people ask me if I experience the same my answer is no and they are confused.

 

In answer to the second bolded....no. You have a gluten sensitivity and you suffer health problems when you consume it. Feel free to ask for no bun or whatever.

 

I thought I was pretty clear in my previous post explaining the difference between people who actually do suffer from health issues from gluten and those who do not. Those who do not are the ones I get annoyed with when they claim health problems from a food where there is none.

 

I'm not sure why you think I'm putting you into that group.

 

I'm glad you have figured out that gluten is a problem for you.

 

 

 

And we're back to the claim that it's all in our heads. As if a 3 year old autistic child could force her body to stop growing and then magically force it to quickly gain a whole bunch of height and weight simply through the power of her mind.

You do not have a clear understanding of what placebo response means. It is *not* claiming that "it's all in our heads" at all. In fact, we know it's not just a psychological response. It is a physiological response, and a very effective one at times. It is not to be discounted as a valuable option for treatment (with or without other treatments depending on each case). The placebo response is *not* simply mind over body. That may be way you react negatively to the suggestion that some people experience placebo response.

 

Also, I haven't seen one person claim that your child's improvement in health is not related to being gf. No one has claimed that your dd does not have a gluten sensitivity/intolerance. No one has even said that your dd specifically is experiencing a placebo response. I don't think she is. It seems to me that your dd falls between the cracks in regards to the tests available at this time for gluten intolerance. Maybe in the future they will continue to improve testing. 

[Crimson Wife]

She's spreading misinformation then. There is no commercially available GM wheat. No one is eating GM wheat.

It's not GM in the sense of Monsanto mucking around with wheat DNA in some lab like they do with corn & soy. But rather it's that through old-fashioned selective breeding methods modern wheat is very different from ancient strains. "The Wheat Belly Diet" has a lot of information on the subject.

[Crimson Wife]

I thought I was pretty clear in my previous post explaining the difference between people who actually do suffer from health issues from gluten and those who do not. Those who do not are the ones I get annoyed with when they claim health problems from a food where there is none.
 
I'm not sure why you think I'm putting you into that group.
 
I'm glad you have figured out that gluten is a problem for you.

I resent being told that non-celiac gluten intolerance isn't real and that only people who are tested and then formally diagnosed by a M.D. with celiac or wheat allergy should go GF.

I took the negative tests as evidence that we didn't need to make any changes in youngest DD's diet for two full years and I very much regret it. The problem was that DD's growth fell off the curve at the time when both gluten got introduced into her diet (in the form of barley cereal) and she became mobile. So it became easy to explain away when the celiac and food allergy tests came back normal. I wish that I had put her on an elimination diet then but I didn't because I had gotten a false sense of security from the tests. I don't blame our pediatrician because she was correct in saying that "somebody has to be in that below the 2nd percentile part of the growth curve" and DD didn't appear malnourished, only tiny.

[Χά�ων]

I resent being told that non-celiac gluten intolerance isn't real and that only people who are tested and then formally diagnosed by a M.D. with celiac or wheat allergy should go GF.

I took the negative tests as evidence that we didn't need to make any changes in youngest DD's diet for two full years and I very much regret it. The problem was that DD's growth fell off the curve at the time when both gluten got introduced into her diet (in the form of barley cereal) and she became mobile. So it became easy to explain away when the celiac and food allergy tests came back normal. I wish that I had put her on an elimination diet then but I didn't because I had gotten a false sense of security from the tests. I don't blame our pediatrician because she was correct in saying that "somebody has to be in that below the 2nd percentile part of the growth curve" and DD didn't appear malnourished, only tiny.

 

FWIW DS was right at 50% for height and weight on the chart until he was 6. Then he jumped his growth. What happened? He grew. Nothing special. He is now off the chart.. Had I taken him off gluten at that time he grew I could claim that gluten was stunting his growth and that without gluten he was now able to reach his full height potential. My point: It very easily could have just have been her time to grow.

 

 

 

http://www.cureceliacdisease.org/archives/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives

 

 

http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/

 

 

 

The First Step:  tTG-IgA Test

There are many screening blood tests for celiac disease but the most sensitive and commonly used, whether symptoms are present or not, is the tTG-IgA test.

 

Tissue Transglutaminase Antibodies (tTG-IgA) - The tTG-IgA test will be positive in about 98% of patients with celiac disease who are on a gluten- containing diet. This is called the test’s sensitivity.  The same test will come back negative in about 95% of healthy people without celiac disease. This is called the test’s specificity.  There is a risk of a false positive especially for people with associated autoimmune disorders like Type 1 diabetes, chronic liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis and heart failure, who do not have celiac disease.

There are other antibody tests available to double-check for potential false positives or false negatives.

Other tests:

• IgA Endomysial antibody (EMA): The EMA test has a specificity of almost 100%, but is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test.  It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord.  It is usually reserved for difficult to diagnose patients.
• Total serum IgA: This test is used to check for IgA deficiency, a harmless condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result.  If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.
• Deaminated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies.

While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation.

[Word Nerd]

It's not GM in the sense of Monsanto mucking around with wheat DNA in some lab like they do with corn & soy. But rather it's that through old-fashioned selective breeding methods modern wheat is very different from ancient strains. "The Wheat Belly Diet" has a lot of information on the subject.

Selective breeding--which has been done for centuries--is not genetic engineering, so it is not GM in any sense. Whether the information in the book is accurate is subject to debate.

[ChocolateReignRemix]

Selective breeding--which has been done for centuries--is not genetic engineering, so it is not GM in any sense. Whether the information in the book is accurate is subject to debate.

 

Just to be blunt, there is a lot of questionable "science" in that book.

[Word Nerd]

Just to be blunt, there is a lot of questionable "science" in that book.

Agreed.

[Crimson Wife]

Just to be blunt, there is a lot of questionable "science" in that book.

Just like Dr. Linus Pauling was ridiculed for years on the subject of antioxidants- until science proved him right (not to mention the fact that he lived to be 93).

[ChocolateReignRemix]

Just like Dr. Linus Pauling was ridiculed for years on the subject of antioxidants- until science proved him right (not to mention the fact that he lived to be 93).

 

Some things in that book are just wrong and demonstrate that he is (imo) intentionally misleading those who buy it.  Is he right about some things? Possibly, and those issues are being researched by others.  However, anyone buying everything he is selling would serve themselves well to diligently research a lot of what Davis says to see what is and is not correct.  Davis also relies heavily on correlation.

[ChocolateReignRemix]

And BTW, a lot of things advocated by Dr. Pauling are still ridiculed today, and rightfully so.

[nmoira]

Just like Dr. Linus Pauling was ridiculed for years on the subject of antioxidants- until science proved him right (not to mention the fact that he lived to be 93).

 

Ummm, the research I've seen is that supplementing with anti-oxidants make it more likely you'll get cancer. 

 

This is the first summary that came up in Google, so it's what I'm pasting:

 

http://bigthink.com/devil-in-the-data/the-dark-side-of-antioxidants

 

ETA: Eating fruits and veg is protective, and relatively small amounts of supplements probably aren't harmful. Evidence is also mounting that low dose aspirin is protective against certain cancers.

[busymama7]

In regards to lactose intolerance, lactase, the enzyme needed to digest lactose is present in raw milk. Many many people, my husband and children included, can digest raw milk and dairy just fine but not pasterized(when we can get it) This is just another example of our messed up food supply :(

Also, some people with gluten issues are fine when the wheat is properly sprouted or sourdoughed. This is how our ancestors would have consumed it. Quick rise breads and commercial yeast is very very new and does cause many of these issues(I'm sure not celiac or allergies but more just the intolerance). Again, its a modern issue due to modern food practices.

[NASDAQ]

Raw milk does not contain indigenous lactase. It is, of course, much more likely to contain listeria and a variety of charming infections.

http://www.fda.gov/food/foodborneillnesscontaminants/buystoreservesafefood/ucm247991.htm

http://med.stanford.edu/ism/2014/march/milk.html

People with wheat allergies or celiac cannot eat sourdough bread, nor unleavened wheat products. The issue is with the wheat, not the leavening.

[Aelwydd]

Well, I debated with myself whether to even post to this thread, as several posters seem to have reached foregone conclusions regarding those of us who opt to go wheat-free (or gluten-free) for any reason short of an official Celiac's or wheat allergy diagnosis.


As someone has already correctly pointed out, there are no varieties of GMO wheat currently available on the consumer market. However, further research revealed that most commercially grown wheat is genetically altered through mutation--via chemical irradiation. It is called mutagenesis, and through this process, that not only the phenotypical wheat plant has been changed (from a tall, willowy plant, to a rather short, stubby plant with a large germ), but its proteins have been consierably altered. Interestingly, among those specifically targeted, are several amino acids in wheat gluten proteins.


Evolution is predicated upon natural selection, with the the mixing of genetic variations and mutations happening over a very long time. Any changes to the development of the human genome over millenia were subtle. But, in the course of a very short period of time--in evolutionary terms, the merest fraction of a second--multiple food sources have been forced to undergo some radical and unnatural mutations via mutagenesis. This has been done to make some foods, like wheat, less susceptible to disease and pestilence, so that fewer pesticides would be needed in the production of food. While this is a desirable goal, the fact is: if multiple proteins in wheat are being mutated to such a degree, that the human immune system may react to these novel proteins as foreign agents, precipatating a full out inflammatory response.

Ultimately, different people are going to have different reactions to the genetic changes in their food.  Because many foods are being altered, some changes may affect some people and others have no discernable effect at all.  I think the increased numbers of food allergies and digestive disorders over the last few decades are quite possibly indicative of a rather broad effect of significant genetic deviations in our food supply.  Only more time and more studies will tell.  But, I have no difficulty believing that many people, who are not diagnosed with Celiac's or a wheat allergy, may still experience digestion issues with wheat.  It just depends upon individual genetics and tolerances.

 

EDITED to remove personal info.

[Catwoman]

Wow, Rebekah -- it sounds like you were so sick and miserable!!! I'm so glad you were able to figure out what was really going on and that you were able to find a solution. It must have been so incredibly frustrating (and scary) to see so many doctors and have so many tests (and worry like crazy while you waited for the results of those tests.)

I'm so glad you're OK now.

[Mom-ninja.]

CW, not once have I said that non-celiac gluten sensitivity does not exist. So if your comment is meant for me it is misled.

[Soror]

Aelwydd, Thank you for sharing your story. I think it highlights one of the big issues here which is inadequate testing methods. I don't think everyone has an issue with gluten, that seems preposterous as there are plenty of people and cultures thriving while eating it. I do however think the methods we have to test are woefully inadequate and that perhaps we might not even know at this point the different reasons why it bothers some people.  I don't understand the mocking of those who have had positive effects, growth issues are known to exist for those with Celiac I think it is very likely that as time passes we will see that either there are Celiac diagnosis that are being missed (as has been the case for decades now) or that there is another issue with gluten causing similar problems.

 

My son has only had genetic testing, he will likely never have the gold standard proof of Celiac. I was desperate by the time that we went GF and couldn't afford the blood test and bioposy which are expensive and often give false negatives. So, we tested for genes and malabsorption. I've never had any tests. My childhood read like a posterchild for Celiac but I'll likely never have any proof. Sometimes I wish I had been more oblivious and not have heard of Celiacs, of course if I had there is also a large chance we would still be suffering today since the diagnosis is so often missed. 

 

Also, my ds and I both have physical and mental symptoms if we ingest gluten. Please don't dismiss how serious the mental effects can be for some, those were actually much more frightening to me than the physical. I don't care to go into details but no one wants their child or themselves suffer in that way.

[lollie010]

After reading through the entire thread, I wanted to just add our story in case it helps anyone.

DD8 has been miserable with stomach pain, acid reflux, cyclical vomiting, and headaches since she was a baby. Way TMI but she never had a firm stool. Sometimes it was bloody. Everyday she was dizzy and/or nauseous. Her belly was distended (hard as a rock and bloated). She had chest pains. Many days she complained of knee pain, neck pain, ankle, or hip pain. She had thick ankles and wrists and very puffy eyes.

She had a lot of GI testing, kidney function testing, and I was becoming convinced at one point that she had JRA. Her very reasonable and non-alarmist doctor had mentioned it. Honestly, her complaints had become like background noise.

I never thought about celiac because she was overweight and I thought part of the celiac panel of symptoms was being underweight. We just couldn't figure out why she was overweight. We eat a healthy diet and she was in dance, gymnastics, and soccer. She loved her activities so much but was starting to have to drag herself to them. She had a ravenous appetite even though she had a long list of things she couldn't digest well.

The chiro recommended a GF diet just to see how she would feel. She felt swelling in her abdomen which she said was consistent was problems with gluten. For over a year she advised and I just couldn't pull it off because of all that we had going on in life.

Finally, I said myself "enough," and started her on a GF diet. I really didn't mention it to her, just changed some things around on our family menu. Within 3 days I had a different child on my hands. Around the one week mark I informed her that she had gone 7 days w/out gluten. So she is 16 days into her 21 day trial and has experienced an amazing turn around.

Her clothes are falling off but she hasn't cut back on calories or anything. She is probably two dress sizes smaller and her little belly looks like a deflated balloon. She's only had one headache in 16 days. She has had no abdominal pain, chest pain, acid reflux, dizziness, nausea, malaise, car sickness or bloating. The swelling around her face and eyes is so much reduced that I can see her eyes again.

The change is so dramatic that I thought we should go ahead and test for celiac. But, after talking with three different friends who have children with diagnosed celiac I decided that for now she will just remain self-diagnosed. With a peanut allergic son we are used to uninformed and well-meaning advise and skepticism. We will help her deal with it. She has the fortune if having a dad who is a chef and he would never, never , never relax his standards in the kitchen if someone said they could not have gluten or any other allergen.

[Aelwydd]

Wow, Rebekah -- it sounds like you were so sick and miserable!!! I'm so glad you were able to figure out what was really going on and that you were able to find a solution. It must have been so incredibly frustrating (and scary) to see so many doctors and have so many tests (and worry like crazy while you waited for the results of those tests.)

I'm so glad you're OK now.

 

Thank you, Cat.  I appreciate your kindness and understanding. I may delete my post because I'm not fond of sharing so much about my personal health history.  What you said about frustration and fear--yes.  I did not share the full extent of the symptoms and tests I had to undergo, but soror and lollie have touched on it with their own reports of impaired cognition, joint pain, and constant pain.  It was a miserable time. I was so hopeless, and so afraid that something was very wrong with me, that I might not live to see my son grow up.  None of us has any guarantees, certainly, but I was so, so tired, and I suspected whatever was causing my symptoms wouldn't be found out until my health had deteriorated irreparably.

 

As soror pointed out, and as my enterologist informed me, diagnoses for wheat-sensitivities still contain an unacceptable margin of error. The field of nutrition, itself, is not one that most physicians are heavily trained in.  That leaves a huge information gap through which, I suspect, many more people than myself have fallen.  Anecdotal data is often woefully incomplete and can be highly subjective in nature, though they are still considered legitimate (weaker) forms of evidence.  What is needed are well designed studies of both the mutagenic processes our food undergoes, other ways it is processed and altered, and the potential links between these and increases in multiple chronic immune and digestive disorders.

 

I shared my experiences in case there are readers who have likewise been suffering from a host of maladies, but no positive diagnoses.  I do not encourage self-diagnoses or for people to rush to start a GF diet.  There are are many potential irritants and harmful agents in one's environment that can cause illness. I only encourage them to do their own research, and know that it's not just "in their heads."  I'm still not completely recovered, but I feel like I'm finally getting back to the person I used to be before I got so sick.

[Catwoman]

Thank you, Cat. I appreciate your kindness and understanding. I may delete my post because I'm not fond of sharing so much about my personal health history.

I quoted your post in my reply, so I'll go back and delete it, in case you decide to remove some of your personal info from it. :)

[nmoira]

Rebekah, I'm happy you've found relief. :)

[Tiramisu]

I'm so thankful for these recent posts. I hope and believe they will help someone reading them. I know it's hard to share personal information on the web. I've felt those same misgivings. But I trust it's a way to help someone who is suffering. 

 

I wish I had listened more seriously to the people who had suggested something in my kids' diet might explain the difficulties they were having. It may have been easier making those changes with toddlers than pre-teens and teens.

 

I've had three gastroenterologists talk about the seriousness of non-celiac gluten sensitivity to me so I have hope that more people will be learning about it.