I'm sorry but it's another gluten thread... So confused!

[1GirlTwinBoys]

My DD went gluten free 2 weeks ago today for reasons such as anxiety, obsessive worrying, sadness etc..  

 

Here is the background again.  Her dad went GF 2 years ago because of symptoms such as terrible digestive issues, scalp breakouts, join aches and nausea.  He went to the Dr. because he thought something serious was wrong like cancer.  He was blood tested for gluten and it came back negative.  I knew the high likelihood of false negatives so I put him on a 100% GF diet and he was so much better within 2 days. If he takes one bite of food with gluten he knows it and will feel the effects for 3 days.  His sister also has to be gluten free because of issues similar to his along with anxiety.  She has told me before that she wished they could have known about this when she was younger because she could have lived a completely different life without all the anxiety and worry as a child.  So, when my DD, who is 13, started showing the signs of abnormal worry and anxiety, in the back of my mind I was wondering if she could have this issue as well.  That is when 2 weeks ago I decided to go GF with her.  She has been so much better, even through her time of the month which is normally when it's the worst.

 

Looking back, we realize how much better of a life my husband's dad would have lived if they would have known about gluten before he died 3 years ago. Also, my husbands uncle had his intestines explode and ended up in the hospital.  I know Celiac can have a genetic link so it does make me wonder.  

 

I just hate to put her though invasive testing when even then there are false negatives.  I know she'd have to go back on gluten to do the testing.

 

So then today, my husband forwards me an email that the Dr. he works with sent to him and this is what it says:     Gluten  

The myth : Gluten sensitivity is the root of depression, anxiety, indigestion, etc.  

The truth: Unless you have celiac disease, it's unlikely that gluten is causing your symptoms. Although there is some evidence that some people may have a gluten sensitivity (outside of an allergy), researchers have found that the far more likely culprit is something called fermentable, poorly absorbed short-chain carbohydrates (called FODMAPs), which also happen to be found in gluten-heavy foods like pasta, breads, and beer.  

The hard truth: You should not cut gluten out of your diet without working with your doctor. For one thing, if you cut gluten out before you're tested for celiac, the tests will be inconclusive and you'll have to start eating it again to get an accurate diagnosis. But also, researchers suspect that those who do feel better after removing gluten from their diets are actually responding to the absence of something else. That something else might be FODMAPs, preservatives, added sugars, or it may even be the root of an eating disorder, so it's much better to work with a professional who can help you figure out what's really going on. 

 

 

I'm so unsure of what to do and want to make the best decision for her but I don't know what to do anymore.

 

Sorry for all the rambling but I just feel overwhelmed with making the right decisions.  I don't want to do anything wrong.

 

 

 

 

[JumpyTheFrog]

Feeling better is most important. I will never have an official diagnosis because I went gluten-free in the 1990s, back when nobody ever heard of it. All I care about it the endless sinus infections stopped, I don't get strep throat frequently anymore, my digestion is better, and I am happier. My dad and brother will never have official diagnoses either. Oh well.

 

That said, it is true that some people might have trouble with something else that happens to be removed if they go gluten-free. I think some doctors forget that their patients may not care about the diagnosis though, they just need to feel better.

[JumpyTheFrog]

Part of the problem is that people have to have lots of intestinal damage and years of feeling bad before celiac can be diagnosed via biopsy. I get a little angry when I read about doctors telling patients who are feeling better gf to go back on it and let their body get damaged more all for the sake of the doctor being convinced it is celiac.

[Caraway]

You do not need a positive Celiac test.  I *am* Celiac, but the research has shown that people who are not can still react to gluten.  And even if your deeper issue was Fodmaps, wouldn't the end result be the same - to cut out pasta etc???

 

This "You should not cut gluten out of your diet without working with your doctor" sounds like it was written by someone who really needs to confirm their own importance.  Who are these people to think they can change their diet and heal themselves?!?!  They need a doctor!

 

My best health has never been the result of mainstream doctors.  And God knows that I have given so many of them years of my life to try to help me.  Follow your gut.  Literally.

 

My suggestion would be to do a strict gf diet, or something like Whole 30 and see if she feels better.  If she does, you have your answer.  You do not need a doctor to tell you what you will see right in front of you.

 

I am not saying this to be condescending, but to EMPOWER YOU.  

[regentrude]

That said, it is true that some people might have trouble with something else that happens to be removed if they go gluten-free. I think some doctors forget that their patients may not care about the diagnosis though, they just need to feel better.

 

But if something else is the issue, removing gluten could be a total overkill and make it much harder to feel better than just removing the offending ingredient.

 

I cannot eat commercial bread in the US; it gives me big digestive trouble. If I cut out gluten, that would certainly make the symptoms go away - but in fact, gluten is not the culprit, and not even wheat, since I can eat pasta and home baked goods. My quality of life is much higher if I eliminate only the offending foods and not the entire food group.

 

ETA: So to the OP, I think it would be worth experimenting to see whether the issues are really gluten specific or whether a less restrictive diet would achieve the same results. That does not need to be done under doctor's supervision, though - you can figure this out yourself.

Edited September 3, 2016 by regentrude

[Caraway]

I think this falls under the category of "if you hear hoofbeats..."  the odds, especially based on family history, suggest gluten.  If she cuts it, feels better, and then decides it is possibly overkill, she can eat a homemade muffin.  And see how she feels.  

[1GirlTwinBoys]

Really great responses.  Thank you so much!

 

I do hate to eliminate so many foods if it's not necessary to do so.  It's so hard to know where to even start.

 

 

[wapiti]

My two cents:  so much is not known.  There are many possible angles to why going off gluten could improve health, from the effects on the microbiome, to the different parts of the gluten protein that can cause problems that are not the same parts involved in celiac, to the fact that virtually all non-organic wheat flour products in the US contain forced supplementation of folic acid, a synthetic vitamin which not everyone processes into folate very well due to genetic polymorphisms.

 

I agree with the PP, go with your gut.  If it's helping, it's helping.  My dd decided after her own research to go off dairy, which helped her acne, but I really think she should do a trial off gluten (she has had the bloodwork already), though she's not willing to try it yet.

 

ETA, to add to the enormous lack of current scientific understanding, I know a person who believed herself to be gluten intolerant for years, as it seemed to cause joint swelling and a variety of horrible symptoms.  Turns out she had lyme and a bunch of other stuff (lives in Southern California), was treated by an alternative doc and is now much better.  I hadn't heard whether she went back to eating gluten - probably not, I wouldn't in her shoes.

 

The important take-aways:  gut health is connected to mental health (quite directly via the vagus nerve).  The immune system (partly located in the gut) is connected to the nervous system.  I don't understand the common reluctance among mainstream docs to admit this; too many unknowns I guess.

Edited September 3, 2016 by wapiti

[Caraway]

This is the list for Fodmaps:

 

Fodmaps is an acronym for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, sugars that draw water into the intestinal tract. They may be poorly digested or absorbed, and become fodder for colonic bacteria that produce gas and can cause abdominal distress. They are:

â–  Fructose: A sugar prominent in apples, pears, watermelon, mangoes, grapes, blueberries, tomatoes and tomato concentrate, and all dried fruits; vegetables like sugar-snap peas, sweet peppers and pickles; honey; agave; and jams, dressings and drinks made with high-fructose corn syrup.

â–  Lactose: The sugar in milk from cows, goats and sheep, present in ice cream, soft cheeses, sour cream and custard.

â–  Fructans: Soluble fiber found in bananas, garlic, onions, leeks, artichokes, asparagus, beets, wheat and rye.

â–  Galactans: Complex sugars prominent in dried peas and beans, soybeans, soy milk, broccoli, cabbage and brussels sprouts.

â–  Polyols: The sugar alcohols (sweeteners) isomalt, mannitol, sorbitol and xylitol, present in stone fruits like avocado, cherries, peaches, plums and apricots.

(Taken from http://well.blogs.nytimes.com/2014/10/06/when-gluten-sensitivity-isnt-celiac-disease/?_r=0)

Trying a GF diet is significantly easier.  Especially if your husband is already doing it!  

[IfIOnly]

Wow! That's really great you have a doctor that would consider and treat FODMAPS and is willing to go deeper. I would make an appointment, go off gluten, and talk with him about symptoms and testing. It your daughter has it, removing gluten will most likely not take care of other symptoms. Allergies can be related to overgrown bacteria and/or damaged villi and enzyme deficiencies.

[Upward Journey]

This is from a month ago.  It's really interesting.  There's a link in the article to the abstract as well.

 

http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html

[Butter]

(I have Celiac as do two of my kids and my dad... huge genetic component.)

 

Honestly, if they are better off gluten and react on it, eat gluten free.  I'm not sure why there is such a push to discredit people who claim they feel better off gluten.  Really, what's the problem with them eating no gluten and saying they feel better?  Who does it hurt other than their own pocketbook if it's all in their head?  People go on different diets all the time.

 

In your daughter's case, I'd take her off gluten and see what happens.  If in a couple months she is still dealing with some of the same issues, I'd go further and go completely FODMAPS since just gluten won't get all of it and see if that helps more.

[Pawz4me]

After years of dealing with IBS and acid reflux I figured out that I need to eat a relatively low FODMAP diet. I realized that onions were a major trigger for me and started researching that, which led me to info on FODMAPs. Had I not realized that onions were a problem it would have been quiet easy to convince myself that gluten was the cause of my problems since eliminating it would have likely removed enough FODMAPs from my diet that I would have improved a lot.

Edited September 3, 2016 by Pawz4me

[Butter]

I have a friend who had some blood test done that identifies food sensitivities and onion was a big trigger for her acid reflux and IBS, too.  She had others, but that was a surprise.  I have another friend who is a big fan of that blood test since it identifies things you'd never except (garlic was one for her).  I don't remember what it is called, though.

[wapiti]

I have a friend who had some blood test done that identifies food sensitivities and onion was a big trigger for her acid reflux and IBS, too.  She had others, but that was a surprise.  I have another friend who is a big fan of that blood test since it identifies things you'd never except (garlic was one for her).  I don't remember what it is called, though.

 

We've done a few of the IgG food sensitivity tests.  I took my dd to our allergist, who prefers the ALCAT as having the highest accuracy, and yet still, the information is only a starting point.  Green beans and cocoa were her biggies, with onion not far behind, though elimination has not helped her situation - there is more going on that we haven't figured out yet.  I've forgotten the names of the other IgG food sensitivity tests my other kids have had.  For example, my ds has a real-life reaction to dairy (long story) and yet that did not show up as a sensitivity on any test; what did show up was wheat bran (there goes all the whole wheat options) and barley (which is in Gold Medal and other ordinary wheat flours), and a whole long list of things so comprehensive that it's nearly impossible to avoid them all.  (Kiddo is currently getting immune system treatments, another long story...)  These tests are all very controversial and a lot of arguing goes on over accuracy or lack thereof.

Edited September 3, 2016 by wapiti

[Ellie]

My DD went gluten free 2 weeks ago today for reasons such as anxiety, obsessive worrying, sadness etc..  

 

Here is the background again.  Her dad went GF 2 years ago because of symptoms such as terrible digestive issues, scalp breakouts, join aches and nausea.  He went to the Dr. because he thought something serious was wrong like cancer.  He was blood tested for gluten and it came back negative.  I knew the high likelihood of false negatives so I put him on a 100% GF diet and he was so much better within 2 days. If he takes one bite of food with gluten he knows it and will feel the effects for 3 days.  His sister also has to be gluten free because of issues similar to his along with anxiety.  She has told me before that she wished they could have known about this when she was younger because she could have lived a completely different life without all the anxiety and worry as a child.  So, when my DD, who is 13, started showing the signs of abnormal worry and anxiety, in the back of my mind I was wondering if she could have this issue as well.  That is when 2 weeks ago I decided to go GF with her.  She has been so much better, even through her time of the month which is normally when it's the worst.

 

Looking back, we realize how much better of a life my husband's dad would have lived if they would have known about gluten before he died 3 years ago. Also, my husbands uncle had his intestines explode and ended up in the hospital.  I know Celiac can have a genetic link so it does make me wonder.  

 

I just hate to put her though invasive testing when even then there are false negatives.  I know she'd have to go back on gluten to do the testing.

 

So then today, my husband forwards me an email that the Dr. he works with sent to him and this is what it says:     Gluten  

The myth : Gluten sensitivity is the root of depression, anxiety, indigestion, etc.  

The truth: Unless you have celiac disease, it's unlikely that gluten is causing your symptoms. Although there is some evidence that some people may have a gluten sensitivity (outside of an allergy), researchers have found that the far more likely culprit is something called fermentable, poorly absorbed short-chain carbohydrates (called FODMAPs), which also happen to be found in gluten-heavy foods like pasta, breads, and beer.  

The hard truth: You should not cut gluten out of your diet without working with your doctor. For one thing, if you cut gluten out before you're tested for celiac, the tests will be inconclusive and you'll have to start eating it again to get an accurate diagnosis. But also, researchers suspect that those who do feel better after removing gluten from their diets are actually responding to the absence of something else. That something else might be FODMAPs, preservatives, added sugars, or it may even be the root of an eating disorder, so it's much better to work with a professional who can help you figure out what's really going on. 

 

I'm so unsure of what to do and want to make the best decision for her but I don't know what to do anymore.

 

Sorry for all the rambling but I just feel overwhelmed with making the right decisions.  I don't want to do anything wrong.

 

The doctor he works with has old and inaccurate information. He has not apparently learned that people can be sensitive to gluten without being celiac. The other information could be true, but you can clean up your own diet without your doctor's help. Presumably, the doctor does not live in your house, do your grocery shopping, or prepare your food. 

 

If y'all feel better not eating foods with gluten, then don't eat foods with gluten.

 

Of course, you could try the Autoimmune Protocol (AIP), which eliminates more foods than FODMAPs (FODMAPs includes some foods that are not allowed on AIP). Do AIP for a couple of months, then reintroduce the foods you eliminate and see what happens. Foods not allowed on AIP are all grains, nightshades, eggs, dairy, seeds/nuts, beans/legumes.

[Mom-ninja.]

You could also have your dd (and dh if he wanted) do the genetic testing for celiac. This test will simply tell you if you have the genetic markers of celiac. It doesn't mean you actually have it; it just means you could develop it at some point in your life. The usefulness of the test is to possibly rule out celiac. If you don't have the markers then celiac is ruled out. It's a way to add more information to help spot false negatives. 

 

Did the doctor tell you that the blood test can be negative even though a biopsy might be positive? 

 

As for non-celiac gluten sensitivity, the medical community is not dismissing it. They are trying to understand it so that it can possibly be treated. The information about FODMAPS is based on the latest studies done on non-celiac sensitivity. They are also working on diagnostic tests for it. 

 

Have you taken your dd to a ped GI? 

[Pawz4me]

You do not need a positive Celiac test.  I *am* Celiac, but the research has shown that people who are not can still react to gluten.  And even if your deeper issue was Fodmaps, wouldn't the end result be the same - to cut out pasta etc???

 

This "You should not cut gluten out of your diet without working with your doctor" sounds like it was written by someone who really needs to confirm their own importance.  Who are these people to think they can change their diet and heal themselves?!?!  They need a doctor!

 

My best health has never been the result of mainstream doctors.  And God knows that I have given so many of them years of my life to try to help me.  Follow your gut.  Literally.

 

My suggestion would be to do a strict gf diet, or something like Whole 30 and see if she feels better.  If she does, you have your answer.  You do not need a doctor to tell you what you will see right in front of you.

 

I am not saying this to be condescending, but to EMPOWER YOU.  

 

My understanding is that most people with FODMAPs issues don't need to cut out whole groups of foods, but rather that most just need to watch their total intake. That's mostly true for me. The only thing I totally cannot tolerate at all is raw onion, even a tiny amount. But other than that I do fine with just moderating my intake -- a little bit of bread is okay, as is a little bit of milk and a little bit of high FODMAP fruit. But maybe not all on the same day. What's important for me is to keep tabs on my total intake of FODMAPs foods over the course of a day. I haven't found it necessary to totally eliminate any food other than raw onion.

 

 

But if something else is the issue, removing gluten could be a total overkill and make it much harder to feel better than just removing the offending ingredient.

 

I cannot eat commercial bread in the US; it gives me big digestive trouble. If I cut out gluten, that would certainly make the symptoms go away - but in fact, gluten is not the culprit, and not even wheat, since I can eat pasta and home baked goods. My quality of life is much higher if I eliminate only the offending foods and not the entire food group.

 

ETA: So to the OP, I think it would be worth experimenting to see whether the issues are really gluten specific or whether a less restrictive diet would achieve the same results. That does not need to be done under doctor's supervision, though - you can figure this out yourself.

 

I think there's a researcher (at University of Washington IIRC) who speculates that the fast acting yeast used in commercial bread in the U.S. may be at least a part of the problem some people have with it. I don't think he's as yet completed a study to back up that hypothesis, though.

Edited September 3, 2016 by Pawz4me

[IfIOnly]

Another thing about FODMAPS, a friend of mine did this diet for some time but switched to Fast Tract Digestion and the tracking and points app. She can eat more foods and is feeling better with FTD. She has gut dysbiosis (in treatment) on conjuction with food sensitivities (who knows which came first).

[38carrots]

We removed gluten from DD's died 5 years ago, for the same reasons--anxiety, moodiness. Her improvement was also immediate and she told me she would not eat gluten again. Several months after a persistent rash of hers cleared up (years of dermatologists with no help).

 

Last year she developed anaphylactic allergy to gluten. The allergist said that if we hadn't taken her off gluten, she'd never get such a severe allergy. However, I believe that her rash back then was already indicative of the allergy.

 

She did test allergic to gluten. She can eat GF junk foods that have all kind of crap in them with no reaction.

 

You need to find a doctor who understands gluten or who will work with you to understand it and your daughter. I believe most simply don't care.

 

 

[Anacharsis]

Any time there is a financial incentive, there will be people who care more about the money than about the long-term consequences to others they've never met. It's like how companies figure out whether to do something that might get them sued; they calculate the odds of being sued, multiply it by the financial damages of the lawsuit and lost sales due to negative publicity, and then compare it to the odds of not being sued multiplied by the amount of money they'd make from the sketchy practice. Then they go with whichever one has the highest return.

​

​Often in complex issues there are no heroes -- people who make more money promoting one side promote that side, while the ones who make more money promoting the other side promote the other side. Each side will of course claim to be champions for the truth who only care about your well-being. :)

​

​Identifying problem ingredients is particularly complicated -- most prepared foods are not simple, especially after being modified to maximize sales and shelf-life. Even if you have the ingredients list in front of you, it's not always the whole story, as there are many processes and practices which change a food in some significant way but which aren't really new ingredients -- unless you are familiar with how the food brand is made in particular rather than how the food is made in general, none of those practices will be obvious.

​

​Something as simple as "ground beef, ingredients: beef" may have an incredibly complex history.

​

​I find that the best way to make good food choices is to focus on the supply chain first; if I understand why and how something in particular is made, it makes it easier to put the ingredients into context.

Edited September 3, 2016 by Anacharsis

[Luckymama]

Dh and older dd have many GI issues---as do every single member of dh's family of origin. Older dd's life is complicated by multiple food allergies.

 

This summer we did a FODMAP trial for 10 weeks (younger dd, with different food allergies, was away from home). Dd suspected gluten is a problem but not the whole situation, as her symptoms improve but do not disappear when gf for weeks at a time.

 

Let me tell you, following the FODMAP protocol with someone who has soy and rice (!!) allergies is very tricky.

 

The results for dh and dd were marked, once they reintroduced foods one at a time.

 

Dd can have moderate amounts of gluten (like a bagel or some pasta or pizza) once a day. If she has any more, she gets the foggy feeling as well as GI yuckies. She cannot eat any onion without pain. She can have moderate amounts of dairy.

 

Dh can eat all the gluten but no lactose. Beans and broccoli (plus cabbage, cauliflower etc) are forever out :( He can eat well-cooked onion.

 

I am so grateful that dd and dh were committed to the strict diet this summer because I doubt we would have figured out their issues without the FODMAP guidelines.

 

(Please excuse any typos--posting from my phone argh)

[Katy]

The science on this is so new, and ever changing.  Keep her on gluten free.  See if she reacts to other foods on the FODMAP list too.

 

There is zero harm in eating the way that makes her feel best.  And frankly I'd probably seek a different doctor, because goodness.  His wish to avoid sloppy science is causing his own sloppy science.

 

I've worked in nursing, I also have a doctor in the family that I've asked questions about this type of thing.  Her answer is "The science might not be there yet, but if it makes you feel better, and it's not harmful, it's worth it."

[Tammi K]

My allergist uses a sentence I love:  I treat the patient, not the test results.         

 

Follow your intuition and see if she feels better. That's what's important.

[HollyDay]

I cut gluten and all cereal grains in May.  I also cut dairy and beans....Think paleo style eating.  My pain levels went down significantly (not away, but better).  My physical therapist remarked that my inflammation was much less....better than it has been in the YEAR we have been doing PT.  My allergies improved greatly. 

 

I do enjoy dairy occasionally.....had some frozen yogurt with dd today as a special treat.  Dairy will bother my sinuses but not increase my pain.  I do occasionally have beans (lentil soup last week when dh took me out to dinner) and that too does not impact my pain levels.

 

BUT

 

If I have any gluten containing food....WOW...the pain levels really go up.  And my sinuses act up.  And my tummy gets rumbly.  I have never tested positive for any gluten or cereal grain.  But, I can tell you that the affects of eating gluten are just not worth it to me. 

[BooksandBoys]

My middle is severely reactive to dairy, very reactive to gluten, and slightly reactive to legumes.

The tests say he's mildly allergic to legumes and has no reactions to wheat or dairy.

The allergist told us we should be feeding him dairy and gluten since he didn't test as allergic.

No.

He cried nonstop (and never slept) for 9 months before we went dairy and gluten free. He had chronic ear infections and pooped once every two weeks despite meds and suppositories. If he is exposed to dairy, he immediately gets an ear infection and is constipated.

So, no. I have no use for a doctor telling me I'm wrong because of test results.

No.

[1GirlTwinBoys]

Last year she developed anaphylactic allergy to gluten. The allergist said that if we hadn't taken her off gluten, she'd never get such a severe allergy. However, I believe that her rash back then was already indicative of the allergy.

 

 

See this is what concerns me about going GF if not absolutely necessary.  I've heard these kinds of things can happen.

[Sharon77]

See this is what concerns me about going GF if not absolutely necessary.  I've heard these kinds of things can happen.

 

 

me too. is there any way to prevent this? how would one go about dealing with such a situation if they were not prepared?

[J-rap]

I think there is a lot we don't know yet.  I have a couple (young adult) kids who swear that removing gluten from their diet changed their lives.  They haven't been tested for anything.

 

These are kids who had a lot of stomach aches and fatigue growing up, along with other weird symptoms like rapid heartbeats, heat flushing, and more.  Without gluten, they feel sooo much better.  I'm quite sure that they would not test positive for celiac.  I think we don't have an understanding yet of how complex this all is.  I think it's often genetic though, so if other members of your family have discovered that removing gluten from their diet is helpful, then I would definitely try it!

 

One thing I'd consider:  unless it is celiac, I'd be hesitant to go 100% gluten-free.  My son is absolutely amazed at the difference he feels when he goes gluten-free (and he has been now for many years), but he still eats gluten once/week so that his body remembers how to process it.  My daughter went 100% gluten-free because she also feels amazingly better without it.  But she doesn't eat gluten, ever.  Now if she accidentally has something with gluten in it, she gets very sick.  This didn't happen before.  She feels her body has completely forgotten how to process gluten now.

 

Anyway, food for thought.   :)

 

 

Edited September 4, 2016 by J-rap

[Soror]

First off, deep breath.

 

1) Your diet your decision- not the dr.- end of discussion

2) You can eat a perfectly healthy diet without gluten

3) You can be gluten intolerant without being Celiac or allergic to it, (same goes with any other food) 

4) There are many things that can cause digestive issues

5) The more you restrict your diet the harder it is and often more expensive- it restricts social situations, eating out, etc.

6) IMO it is best to restrict your diet as least as possible BUT restricting food may be required for quality of life for some

7) You can trail different diets to see how she/you feel

Edited September 4, 2016 by soror

[kiwik]

Ds9 has a very low gluten diet. He eats gluten contaminated food plus foods with small amounts and occasional full gluten items but too much upset his bowels.

[wapiti]

An interesting anecdote that I should add.  I have a young teenage relative who was experiencing significant digestive symptoms, perhaps ulcer-like IIRC, nauseous, feeling generally "sick", anxiety, etc. for a long time through elementary and middle school, missed tons of school, went to all kinds of doctors including multiple ped GI specialists, etc.  Was not celiac.  Finally on the advice of an alternative practitioner, mom took him off gluten even though the ds didn't want to do it.  He was off for a year and recovered from whatever the problem was.  Here's the interesting part:  he can now eat gluten again, or at least he was eating it over the summer without incident.  The working theory is that his intestines healed or something (possibly including microbiome changes?).  Mom is prepared to take him off gluten again if anxiety ramped up with school starting but I haven't heard any updates yet.

 

*sigh* my dd15 knows this relative and dd has very similar symptoms.  But dd's mom, what does she know.

[Tiramisu]

A friend with similar problems--gi and anxiety-- felt better after she stopped gluten, even though she had previously been tested for celiac by a gi. She wanted an answer so eventually went to an allergist who determined she had a true wheat allergy and an allergy to another grain as well.

[Denisemomof4]

I tested negative for celiacs twice, and I have no allergy or sensitivity to wheat. I was tested for both. Still, my body can NOT handle it. FWIW, I thought all these gluten issues were simply the newest fad and was highly suspect. My body tells me differently.

 

I have a special needs adult living with me. She has to follow the low FODMOP diet. I do not, but my only issues cone from wheat.

[Denisemomof4]

All that to say, I don't care what testing says. I know wheat makes me sick.

[Crimson Wife]

My youngest has non-celiac gluten intolerance. She fell off the growth curve when we introduced solid foods (barley cereal was an early food I gave her) and stayed that way until we tried a GF diet. Within 6 weeks of going GF she experienced a dramatic "catch up" weight and height gain. The pediatrician had suspected a food issue but all the tests came back normal, including the extended celiac panel.

 

None of the high FODMAP foods seem to bother her aside from gluten-containing ones. Taking her off fruit actually made her autism symptoms worse (I suspect the antioxidants found in them help her).

 

I would try a low allergenic diet and then see what you can add back without causing symptoms.

[38carrots]

me too. is there any way to prevent this? how would one go about dealing with such a situation if they were not prepared?

 

Your allergist should work to find the lowest amount of gluten that can be tolerated. However, since countless doctors told me that her rash (Well documented and long lasting) was not related to the gluten allergy, even if it disappeared to never come back after she went off gluten, while the enire dermatology department in our childrens hospital couldn't treat the rash...I'm not sure how we could have worked with an allergist, if they wouldn't even test for a gluten allergy, because "there's no such thing as a gluten allergy."

 

 

[wapiti]

I'm not sure how we could have worked with an allergist, if they wouldn't even test for a gluten allergy, because "there's no such thing as a gluten allergy."

 

FWIW, gluten is among the dozens of foods that can be included in IgE bloodwork from Labcorp.  I can see it on the test results ordered by our (outside-the-box) allergist/immunologist.  (I have a vague understanding that IgE bloodwork has improved in recent years.)

[KungFuPanda]

This is the list for Fodmaps:

Fodmaps is an acronym for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, sugars that draw water into the intestinal tract. They may be poorly digested or absorbed, and become fodder for colonic bacteria that produce gas and can cause abdominal distress. They are:

â–  Fructose: A sugar prominent in apples, pears, watermelon, mangoes, grapes, blueberries, tomatoes and tomato concentrate, and all dried fruits; vegetables like sugar-snap peas, sweet peppers and pickles; honey; agave; and jams, dressings and drinks made with high-fructose corn syrup.

â–  Lactose: The sugar in milk from cows, goats and sheep, present in ice cream, soft cheeses, sour cream and custard.

â–  Fructans: Soluble fiber found in bananas, garlic, onions, leeks, artichokes, asparagus, beets, wheat and rye.

â–  Galactans: Complex sugars prominent in dried peas and beans, soybeans, soy milk, broccoli, cabbage and brussels sprouts.

â–  Polyols: The sugar alcohols (sweeteners) isomalt, mannitol, sorbitol and xylitol, present in stone fruits like avocado, cherries, peaches, plums and apricots.

(Taken from http://well.blogs.nytimes.com/2014/10/06/when-gluten-sensitivity-isnt-celiac-disease/?_r=0)

Trying a GF diet is significantly easier. Especially if your husband is already doing it!

 

I'm pretty sure this is just a list of All The Foods! How in the world do you avoid all that without going full carnivore?

[1GirlTwinBoys]

This food stuff can get overwhelming quickly.

 

So she has been 100% GF for 2 weeks and doing really good.  Today she had 1 slice of 100% whole wheat bread so hopefully a little gluten here and there will be fine for her.  

 

Her only symptoms were the anxiety and thoughts with worry.  She wasn't having any GI issues but I have read you can be celiac and gluten intolerant without the digestive issues present.  

 

I think if you can get a girl through being 13, you've really accomplished something. :)  Poor things have so much going on with hormones, changing and self image. 

 

 

[1GirlTwinBoys]

This food stuff can get overwhelming quickly.

 

So she has been 100% GF for 2 weeks and doing really good.  Today she had 1 slice of 100% whole wheat bread so hopefully a little gluten here and there will be fine for her.  

 

Her only symptoms were the anxiety and thoughts with worry.  She wasn't having any GI issues but I have read you can be celiac and gluten intolerant without the digestive issues present.  

 

I think if you can get a girl through being 13, you've really accomplished something. :)  Poor things have so much going on with hormones, changing and self image. 

 

 

[Mom-ninja.]

See this is what concerns me about going GF if not absolutely necessary.  I've heard these kinds of things can happen.

 

Maybe it will ease your mind to know that celiac and non-celiac sensitivity are not allergies therefore will not develop into anaphylatic   

[1GirlTwinBoys]

Maybe it will ease your mind to know that celiac and non-celiac sensitivity are not allergies therefore will not develop into anaphylatic   

 

 

It does.

 

One thing I'd consider:  unless it is celiac, I'd be hesitant to go 100% gluten-free.  My son is absolutely amazed at the difference he feels when he goes gluten-free (and he has been now for many years), but he still eats gluten once/week so that his body remembers how to process it.  My daughter went 100% gluten-free because she also feels amazingly better without it.  But she doesn't eat gluten, ever.  Now if she accidentally has something with gluten in it, she gets very sick.  This didn't happen before.  She feels her body has completely forgotten how to process gluten now.

 

 

Which really makes sense and what I've been concerned about.

[Pawz4me]

I'm pretty sure this is just a list of All The Foods! How in the world do you avoid all that without going full carnivore?

 

Most people with FODMAP issues don't need to avoid ALL those foods. Just some of them, or just limit their overall intake of FODMAPs. I don't find it hard at all, and significantly easier than totally avoiding gluten.

[Pawz4me]

I'm pretty sure this is just a list of All The Foods! How in the world do you avoid all that without going full carnivore?

 

Most people with FODMAP issues don't need to avoid all of those foods. Just some of them, or just limit their overall intake of FODMAPs. I don't find it hard at all, and to me it seems significantly easier than avoiding gluten.

[regentrude]

Most people with FODMAP issues don't need to avoid ALL those foods. Just some of them, or just limit their overall intake of FODMAPs. I don't find it hard at all, and significantly easier than totally avoiding gluten.

 

so what is it you are eating? Just curious, because to me, too, that seems like the list of everything I eat.

[NoPlaceLikeHome]

Ds9 has a very low gluten diet. He eats gluten contaminated food plus foods with small amounts and occasional full gluten items but too much upset his bowels.

Does he tolerate oatmeal that is not specified to be gluten free?

[NoPlaceLikeHome]

Any links? My ds has had GI issues such as excessive burping, constipation, and weird transient rashes and a history of resolved nut/peanut allergies. We are currently a few days in on dairy free to see if that helps the burping and it seems to be better. Any links on gluten free and FODMSP (sp?)?

 

Any ideas for what one would eat for each meal on one of these diets without buying expensive gluten free stuff?

[NoPlaceLikeHome]

Most people with FODMAP issues don't need to avoid all of those foods. Just some of them, or just limit their overall intake of FODMAPs. I don't find it hard at all, and to me it seems significantly easier than avoiding gluten.

Can you list a sample day's diet? 

[Pawz4me]

so what is it you are eating? Just curious, because to me, too, that seems like the list of everything I eat.

,

As I said earlier, the only thing I absolutely have to avoid completely is raw onion. Other than that I just make sure that I limit my overall intake of high FODMAP foods each day (or that I'm prepared to pay the price!). For me it's more about total quantity than particular foods being completely off limits. Note that the diet is called low FODMAP, not no FODMAP!

 

Examples -- If I were going to a Labor Day cookout where baked beans and slaw were being served I'd choose one or the other or have a very small serving of both. For many years, long before I ever read about FODMAPs, I've known I was somewhat lactose intolerant. So I limit dairy. I've had my usual coffee with milk this morning (which I tolerate w/o a problem), but if I were going to that cookout, and especially if I ate baked beans and slaw, I'd skip even a spoonful of the homemade ice cream. If I didn't have the beans or slaw or any other high FODMAP food that bothers me then I'd be fine having a spoonful or two of ice cream.

 

And many people find that it's not all categories of FODMAPs they need to limit or eliminate, but maybe only one or two--for example, maybe fructose causes them problems but not polyols. 

 

ETA: There's lots of reliable info on the internet about the low FODMAP diet, but Monash University in Australia is considered the leading authority. And here's some good info from UVA and Stanford -- note the charts of low, moderate and high FODMAP foods. It's really not that hard to choose the lower FODMAP stuff most of the time.

Edited September 5, 2016 by Pawz4me