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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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MegRie

Gluten In All Grains!? Corn, Rice, Etc...?

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I have celiac and have been gluten free for about 3 years now, and my aunt recently went gluten free, after a string of health issues.  The thing is I still struggle with fatigue quite frequently.  I feel waaaayyy better than before going gluten free, but I still don't ahve a ton of really good days.  My aunt has been gluten free for about 6 months and is stil having some issues (she just started having tremors for one).  She has been doing a lot of research and came across a video (link below) with Dr. Peter Osborne who says that there is a gluten protien in all grains, such as corn and rice.  He says that a large number of people with celiac still have issues because they are eating these things. 

Last week I decided to cut out all grains, cut back on sugars, and not eat any beans (I added a little bit of paleo philosophy into last week).  The thing is I felt great.  I had a lot more energy.  Then the last I ate a gluten free meal at P.F changs and a gluten free meal at Red Robin.  After P.F Chang's I felt sick and kind of nauseated for about an hour.  After the RR meal I got REALLY tired (the type of tired I deal with where it feels like I've taken benadryl or something). 

So my quesiton is this... What are your thoughts?  Maybe this is why so many forums talk about corn problems!?

 

Video link:

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The gluten in grains other than wheat, rye, and barley is not the same. Many, many celiacs do just fine in the traditional gluten-free diet. It's true that SOME of us can't eat corn or other grains, but that is a totally different intolerance. Some of us can't eat nightshades (potatoes, tomatoes, peppers and eggplant), but they contain no gluten. Some of us can't eat soy. Some are sensitive to salicylates or histamines.

 

Additional intolerances are a royal pain, but they are not related to gluten. They don't cause damage to the villi. They just make us feel lousy.

 

But if you feel better grain-free, then by all means, go grain-free.

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The gluten in grains other than wheat, rye, and barley is not the same. Many, many celiacs do just fine in the traditional gluten-free diet. It's true that SOME of us can't eat corn or other grains, but that is a totally different intolerance. Some of us can't eat nightshades (potatoes, tomatoes, peppers and eggplant), but they contain no gluten. Some of us can't eat soy. Some are sensitive to salicylates or histamines.

 

Additional intolerances are a royal pain, but they are not related to gluten. They don't cause damage to the villi. They just make us feel lousy.

 

But if you feel better grain-free, then by all means, go grain-free.

 

So do you think that it is more common with people with celiac disease to have intollerances to these other glutens, and in that case, do you feel they can cause leaky gut, or any sort of damage to the intestines besides the villi?

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Someone correct me if I am wrong but my understanding was that:

 

undiagnosed celiacs  causes villi damage that in turn causes leaky gut and that leaky gut causes additional intolerances .

 

 

Additionally my understanding is that gluten , found in wheat ,rye  & barley   is what cause villi  damage. Dairy  has in some cases also  caused villi damage

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So do you think that it is more common with people with celiac disease to have intollerances to these other glutens, and in that case, do you feel they can cause leaky gut, or any sort of damage to the intestines besides the villi?

 

I don't.  

 

I have a few additional intolerances besides celiac (soy, histamine, MSG, nitrates and food additives, for example) yet my villi are no longer damaged. (I had a biopsy in August after nearly 3 years post-DX) Aside from some intestinal scarring (totally common in long unDXed older celiacs), I have no evidence of active celiac and I eat G F grains.

 

Just because you have a "reaction" or do not feel well, it is not necessarily because your villi are damaged.

 

I have read everything there is on grains, grain- free paleo type diets,  and other food intolerances.... and in particular,  the assertions of the many "pseudo-docs" on the internet. They are chiropractors and various alternative health people who think they know what's best for celiacs. They don't. 

 

Some people do well on a totally grain free diet.  I felt pretty good when I did it for  2 months, but I missed oatmeal and rice, so I have added them back in small quantities and I feel fine.

 

Everyone is different, yes, but G F grains do not cause intestinal villous damage. The leading celiac specialists have said this over and over again, based on solid research.

.

The only way you will know if paleo works for you is to give it a good solid trial for 6 months. 

 

Read this article by Dr. Fasano, et al. You may find it interesting. And do not believe everything you read on the internet by people like Osborne, Clark, "Dr. tom" etc..... Choose wisely.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886850/

 

Dr Fasano's research makes the most sense to me and he believes a health microbiome brings us good health. (he is not the only one)

 

Take probiotics, if you aren't already.

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I don't.  

 

I have a few additional intolerances besides celiac (soy, histamine, MSG, nitrates and food additives, for example) yet my villi are no longer damaged. (I had a biopsy in August after nearly 3 years post-DX) Aside from some intestinal scarring (totally common in long unDXed older celiacs), I have no evidence of active celiac and I eat G F grains.

 

Just because you have a "reaction" or do not feel well, it is not necessarily because your villi are damaged.

 

I have read everything there is on grains, grain- free paleo type diets,  and other food intolerances.... and in particular,  the assertions of the many "pseudo-docs" on the internet. They are chiropractors and various alternative health people who think they know what's best for celiacs. They don't. 

 

Some people do well on a totally grain free diet.  I felt pretty good when I did it for  2 months, but I missed oatmeal and rice, so I have added them back in small quantities and I feel fine.

 

Everyone is different, yes, but G F grains do not cause intestinal villous damage. The leading celiac specialists have said this over and over again, based on solid research.

.

The only way you will know if paleo works for you is to give it a good solid trial for 6 months. 

 

Read this article by Dr. Fasano, et al. You may find it interesting. And do not believe everything you read on the internet by people like Osborne, Clark, "Dr. tom" etc..... Choose wisely.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886850/

 

Dr Fasano's research makes the most sense to me and he believes a health microbiome brings us good health. (he is not the only one)

 

Take probiotics, if you aren't already.

Thanks!  I have been trying to be more vigilant about the probiotic, but I'm still not great at it.  I probably need to get an actual supplement instead of just trying to eat Kiefer.  I don't konw much about Dr. Osborne, and I haven't had the chance to really do research on what he was saying, though some of it did resonate with me, so I wanted to see if others felt they had the same issues.  I will read the article you shared as well.  Thanks for all the advice!

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I'm not big on these Internet " doctors" that make their money off fear and not facts. There is a big botanical explanation for the proteins in other grains. This is a simpler chart

http://www.cureceliacdisease.org/archives/faq/does-corn-contain-gluten

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I'm not big on these Internet " doctors" that make their money off fear and not facts. There is a big botanical explanation for the proteins in other grains. This is a simpler chart

http://www.cureceliacdisease.org/archives/faq/does-corn-contain-gluten

 

I agree.  

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There is gluten in all grains. But it is not the same type of gluten that is in wheat. Would be far less confusing had they named it something else.

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Thanks!  I have been trying to be more vigilant about the probiotic, but I'm still not great at it.  I probably need to get an actual supplement instead of just trying to eat Kiefer.  I don't konw much about Dr. Osborne, and I haven't had the chance to really do research on what he was saying, though some of it did resonate with me, so I wanted to see if others felt they had the same issues.  I will read the article you shared as well.  Thanks for all the advice!

 

A good broad spectrum probiotic has just as many "good guys" bacteria as kefir but without the high dairy content that can  cause serious intestinal upset in some people. (It made me hurl and gave me terrible abdominal cramping, which is too bad because it's full of vitamins and heathy nutrients.) I remember my Armenian grandmother making her own "tan" which was a yogurt/kefir type drink and she drank it every day and that woman was as healthy as it gets. (wish I got more of her genes!)  :D She also ate plain yogurt and cucumbers daily and she called it "madzoon" (Armenian for yogurt)

 

 "Armenian immigrants Sarkis and Rose Colombosian, who started "Colombo and Sons Creamery" in Andover, Massachusetts in 1929.[27][28] Colombo Yogurt was originally delivered around New England in a horse-drawn wagon inscribed with the Armenian word "madzoon" which was later changed to "yogurt", the Turkish name of the product"

 

Okay, that was probably waaaaay more than you ever wanted to know about yogurt and kefir  :lol: and you may have dozed off while reading it lol  ...but my point is maybe the kefir is giving you some trouble too?

 

It's funny you mentioned P F Chang's. I went there for the first time yesterday and I was very impressed with their gluten free offerings and the protocol they have in place to prevent CC. I will be writing my review on Find me Gluten Free later today.

 

An elimination diet may help you find out what's giving you grief. It works for most of us. Good luck, hon!

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Dr. Osborne has helped me.  I am not saying grain free is for everyone with celiac; I don't know.  But every time I tried to deviate from the plan he had for me, I had trouble.  I am grain free as a result of first seeing Dr. Osborne's information.  I am afraid to try corn and rice because I swell up even if I just smell it.  My reactions may be allergies or something else.  I don't know. That is one reason that I can't speak for everyone with celiac.   But my point is that one may want to try grain free if they are long in healing and still not better.

 

Every test Dr. Osborne asked me to do (that I have done) has helped me to improve.  I am still working on them  I believe functional medicine, as Dr. Osborne has been trained in, gets to the roots of issues instead of just masking symptoms.  I think that making sure your body has enough nutrients is the most important need to accomplish healing.

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Dr. Osborne has helped me.  I am not saying grain free is for everyone with celiac; I don't know.  But every time I tried to deviate from the plan he had for me, I had trouble.  I am grain free as a result of first seeing Dr. Osborne's information.  I am afraid to try corn and rice because I swell up even if I just smell it.  My reactions may be allergies or something else.  I don't know. That is one reason that I can't speak for everyone with celiac.   But my point is that one may want to try grain free if they are long in healing and still not better.

 

Every test Dr. Osborne asked me to do (that I have done) has helped me to improve.  I am still working on them  I believe functional medicine, as Dr. Osborne has been trained in, gets to the roots of issues instead of just masking symptoms.  I think that making sure your body has enough nutrients is the most important need to accomplish healing.

You actually go to dr Osborne? I don't think we have any of his actual patients from his practice before! Very interesting. I wasn't even sure if he had any patients or just did Internet sales.

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Dr. Osborne has celiac himself I learned that from his videos.  I sent him some of my records over a year ago and got a phone consult.  He actually told me the supplements I was on were good!  I did decide to get help locally, but the tests he recommended (such as full thyroid panel) are the ones I request.  .  Some of the things he recommends (such as digestive enzymes) are recommended in the NEWBIE thread.  I haven't found his teaching so diverse.  I have been keeping up with forum, medical books, and nutrition books.  The only thing I see vastly different about his teaching is the grain free diet. 

 

He does sell supplements, I have tried them, and they worked for me!  I recently ordered his multi-vitamins because I am having such a struggle with other intolerances.  I didn't feel the prices were outrageous especially considering that I am not finding any multi-vitamin anywhere else.

 

D

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.  Some of the things he recommends (such as digestive enzymes) are recommended in the NEWBIE thread.  

 

That may be about the only thing I have in common with that guy--- so do not try to equate the two, thank you very much.

 

Any advice I may have offered on the Newbie 101 Thread  is for FREE to my fellow celiacs and I do not pretend to be something I am not. I am not a medical doctor. Neither is he. 

 

He says things like "gin and rice and corn" have gluten in them.(the kind of gluten that is harmful to a celiac)

This is simply untrue.

 

On his home page, he claims to have "diagnosed" a child "After an extensive exam and laboratory testing, Micheal was diagnosed with non-celiac gluten sensitivity. "

 

This is amazing, since THERE ARE NO VALID TESTS for NCGS. 

 

Taking medical advice from an online chiropractor is risky business, IMO.

He says he is licensed with the "Pastoral Medical Association and is a Doctor of Pastoral Science and Medicine."

This is not a medical degree. It's not a degree in anything, actually.

Furthermore, "Pastoral Medical Association" is listed as having "dubious" credentials.

 

http://www.quackwatch.com/04ConsumerEducation/nonrecorg.html

 

All I can say is "buyer beware". 

Edited by IrishHeart

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Remember that anyone with an advanced degree from ANY institution (not necessarily an accredited one or reputable one-you can go buy a degree from overseas on the internet) can call themselves Dr. Name.  

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