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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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jeanne-    6

Hi. I am new here. I have been studying about autoimmune dieases on the internet with the functional medicine approach. They try to locate the source of the medical problem and not just treat the symptoms. I was diagnosed with hypothyroidism seven years ago. I was tested pos. for IgG antibodies for gluten about 8 years ago (my eight children are also pos). My doctor thought I may have celiac's but has not tested me.

The functional medicine doctors believe that gluten can cause hypothyroidism. The body attacks the thyroid because it is molecularly similar to gluten. Therefore, they recommend a gluten free diet for life to stop any further tissue damage.

I have also read that the effects of gluten can manifest themelves as arthritis (husband has it), nerve damage (daughter has vitilgo-nerve damage in the skin resulting in loss of pigmentation), eczema (most of us have this too), and other maladies.

No doctor that we have seen has ever told us to go gluten free. The allergist told us to go on a four day rotational diet. Is this sufficient or should we go gluten free?

I would really appreciate any insight. I am a bit overwhelmed at the moment.

Thank you in advance,

Jeanne

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Why hasn't the doctor tested you or your family? You should get all the testing done BEFORE going gluten free. If you go gluten free (or even gluten lite) first it will make future tests inaccurate. And if going gluten free eliminates your symptoms you may not be able to add it back into you diet safely for accurate tests. After testing, then you should try gluten free even if the tests come out negative. There are a lot of false negatives.

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cassP    175

yes you should all be tested before going gluten free.

and YES- gluten can cause all those problems you mentioned.

but- if you've already tested positive for Igg antibodies to gluten... that tells me that you're gluten intolerant or celiac. what was the Igg? Tissue transglutamase??

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jeanne-    6

I don't know about the tissue transglutimase thing. The allergist took a sample of blood, said we were all IgG pos. for wheat. We are also pos for dairy, soy, eggs, corn, potatoes, tomatoes, ect. I did go gluten free about two weeks ago. I don't trust the doctors. Between the false negatives and different approaches which deny eachother, I don't trust that anything will be accurate. The functional doctors (looking for one in our area) say that conventional doctors wait too long before making a dx. They wait untill there is actual damage and disease. I don't want to wait for intestinal damage before going gluten free. I also want to prevent any further damage to my kids' health. My husband has severe ankylosing spondylitis. Would do anything to spare the kids from that misery. I'd like to talk this over with my doctor, but I'm not too sure who to trust.

If we reintroduce gluten into our diet, what will generally happen? How long would I have to eat gluten to get an accurate test result? What tests should I ask for to get the most accuate information?

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I don't know about the tissue transglutimase thing. The allergist took a sample of blood, said we were all IgG pos. for wheat. We are also pos for dairy, soy, eggs, corn, potatoes, tomatoes, ect. I did go gluten free about two weeks ago. I don't trust the doctors. Between the false negatives and different approaches which deny eachother, I don't trust that anything will be accurate. The functional doctors (looking for one in our area) say that conventional doctors wait too long before making a dx. They wait untill there is actual damage and disease. I don't want to wait for intestinal damage before going gluten free. I also want to prevent any further damage to my kids' health. My husband has severe ankylosing spondylitis. Would do anything to spare the kids from that misery. I'd like to talk this over with my doctor, but I'm not too sure who to trust.

If we reintroduce gluten into our diet, what will generally happen? How long would I have to eat gluten to get an accurate test result? What tests should I ask for to get the most accuate information?

I can understand not trusting doctors. I had so many unexplained symptoms from gluten and so many useless tests I was desperate and did an elimination diet before I even suspected celiac. I can't go back to eating gluten now to get a test and I wish I had known to get tested. That said if you are finding the gluten free diet helpful then no need to poison your family again. You would need to eat the equivalent or four slices of gluten bread a day for 2 or 3 months to get a chance at an accurate test, maybe less for you since you haven't been gluten free too long. If you won't need a doctor's note to get food accommodations for your kids at school or a tax credit or other programs (available outside of the US) then you can skip the "doctor's diagnosis". At the very least the IgG test shows you are allergic to wheat so you would probably be able to get doctors notes for that.

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jeanne-    6

Hi Elk,

A functional doctor can be a MD, DO, or a chiropracter. He focuses the patient's treatment on the cause of the disease, not just the sypmtoms. For example, I was diagnosed with hypothyroidism seven years ago. The conventional doctor gave me Synthroid. He treated my symptoms only. No explanation as to why my thyroid is loosing it ablility to function. A band aid approach.

Functional doctors search for the reason why the thyroid stopped working. They believe it is caused by the body confusing gluten, which I am allergic to, with the throid tissue (they are molecluarly similar). So my body is responding to the gluten and attacking my thyroid as well. If I continue to eat gluten, my body will continue to attack my thyroid until it no longer functions at all. My dosage of Synthroid has been increased twice so far. Functional doctors use alternative treatments, herbs, massage therapy, chelation, and a lot of therapies that I don't know about.

There is one group of functional doctors in our area. They are not accepting new patients. Also, because functional doctors are considered alternative medicine, our insurance won't help off set the costs. That' why I am trying to learn what I can on my own. Our famly has a lot of autoimmune diseases. I am hoping to prevent some of them from manefesting in my kids.

I started this entire journey at a website called, Institute for Functional Medicine. Dr. David Brownstein MD and Dr. Kharrazian DC have written books about it. The web site for Underground Wellness has stuff on it too. Take care.

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cassP    175

The allergist took a sample of blood, said we were all IgG pos. for wheat. We are also pos for dairy, soy, eggs, corn, potatoes, tomatoes, ect.

this, to me, looks like they only tested you for wheat or gluten ALLERGY, which i believe is different from Celiac antibodies tests. i think.

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elk    1

Thanks Jeanne! I'll be looking into that because I've been trying to find a doctor who will actually try to think about what's wrong, not just treat my symptoms.

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GFinDC    609

Hi Jeanne,

You might want to read up on Hashimoto's Thyroiditis. Hashi's is an auto-immune disease where the anti-bodies attack the thyroid. There are tests for the thyroid anti-bodies but I don't know if they will be accurate if you are already gluten free. Women get Hashi's more than men from what I read. There are several people on this site that have Hashi's.

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Takala    413

this, to me, looks like they only tested you for wheat or gluten ALLERGY, which i believe is different from Celiac antibodies tests. i think.

_________

Doesn't matter. The answer is still to avoid consuming the offensive food, protein, or substance.

Read here:

Gluten sensitive idiopathic neuropathies

http://en.wikipedia.org/wiki/Gluten-sensitive_idiopathic_neuropathies

Somebody needs to remind the so called "controversy" discussion folk that the gluten intolerant people "subset" folk are not the problem, they exist outside of your explanations of what to create as the reason they are gluten intolerant.

The subset population is not "idiopathic." And I don't see how you can have a proponent or a critic of gluten ataxia. Is this one researcher trash talking another one, or what ? Proper sample size or controls ? Would you like to see my brain scans ? Because the ditz neurologist was an idiot, I'm likely in one of your samples of ataxia that is NOT linked to being officially gluten intolerant. There is no blood test showing me to have high enough antibodies to rate "hey look at that." If you test for antibodies after the diet has been started, and don't tell the patient to resume eating gluten for the test, guess what ? No antibodies.

Ataxia exists. It's a symptom. Duh. <_<

There is a controversial subset of people with idiopathic neuropathies and anti-gliadin antibodies that fail to fit all enteropathic criteria except anti-gliadin antibodies. About 1/3rd have no DQ2 or DQ8 and an apparent abundance of HLA-DQ1. One percent of coeliacs in Europe have no DQ2 and DQ8 but have DQ1. The DQ1 serotype is very common in the normal population, over 65% of Americans have one copy, therefore the linkage is speculative.

___

In addition to an increase in anti-gliadin antibodies a HLA-DQ association has been suggested. Since there is a component of latent or subclinical coeliac disease within the idiopathic population it is not surprising an association with DQ2 was found. Also suggested was a link to DQ1.

HLA DQ1 about 1% of celiacs in Britain have this gene instead of DQ2 or DQ8

http://en.wikipedia.org/wiki/HLA-DQ1

HLA DQ2 close to 95% of celiacs have DQ2, and 30% have 2 copies. Of these double dippers, you've got maybe a 20% + chance of developing celiac during your life, per wikipedia. Highest # carriers in Western Europe, north and west Africa, and Spain and Ireland are the winners.

http://en.wikipedia.org/wiki/HLA-DQ2

http://en.wikipedia.org/wiki/HLA-DQ2#In_coeliac_disease

HLA DQ8 also linked to autoimmune diseases, like celiac and juvenile diabetes and rheumatoid arthritis

http://en.wikipedia.org/wiki/HLA-DQ8

Inheritance of HLA DQ genes in Celiac, has nifty chart. Homozygous means you get 2 copies of a gene, heterozygous means you get one copy, dominant means you only need on copy to get the trait, recessive inheritance means you need 2 copies to get a trait- but this means you can inherit the tendency to get celiac, not for sure you are going to get it, as all carriers don't get the disease, they have the ability to have it develop or get triggered by illness, etc

http://mcdgeneticdisorders.wikispaces.com/Celiac+Disease

Ankylosing Spondylitis, another genetic inherited tendency disease, with 95% of the people with the disease having the HLA B27 marker, but only 5% of the people with that gene get the disease. Infection is thought to be one of the "triggers." Another disease of which the people who get it, tend to come from populations which either originally were from closer to the Arctic circle, or Indigenous. (this means grain, especially wheat, was not introduced into their diets at all until only a few centuries ago. This has a LOT of overlap with the Celiac and Gluten Intolerant populations, which also tend to be descended from Northern Europeans and/or Indigenous populations. Remember, celiac was not "discovered" to be associated with wheat until after WWII, when a Dutch doctor noticed that during the hunger time in Holland, the incidence of mysterious wasting disease in children seemed to disappear. http://askville.(Company Name Removed - They Spammed This Forum and are Banned)/discovered-Celiac-Disease/AnswerViewer.do?requestId=10919424 )

The no starch diet is only "controversial" because it upsets the pharmaceutical industry, just like celiac and gluten intolerance do, in that there are no drug prescriptions to push. There is no reason for any sort of diet which affects the process of a disease to be "controversial."

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

Would love to see the Low or No Starch Diet refined into a gluten free diet, which I think would give better results, but the proponents of No Starch are currently too stuck in their ways to consider this, and the spondy boards are pharmaceutical dominant.

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jeanne-    6

Hi Takala,

Wow! It will take me quite some time to digest the info you gave me. Thank you for the research materials.

I don't understand what you meant about refining the No Starch Diet. I have been preparing the NSD for my husband for seven months now. It seems to me that by eliminating starch, gluten is also eliminated. Everything he eats is a whole food or ones that I prepare from scratch using starch free and gluten free ingredients. I have considered going on the NSD myself to avoid gluten and cut down on my carbs. I am a closet carb craver.

My husband is also on the boards at KickAS, their main focus is the NSD. Yes, some members do use TNF's, but the dietary approach ia always encouraged first. We have received a lot of kind support from them. If you or a loved one is burdened with AS, I would highly recommend KickAS.

Thank you everyone for your help. You have all been very kind. I greatly appreciate that.

Jeanne

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jeanne-    6

Hi Jeanne,

You might want to read up on Hashimoto's Thyroiditis. Hashi's is an auto-immune disease where the anti-bodies attack the thyroid. There are tests for the thyroid anti-bodies but I don't know if they will be accurate if you are already gluten free. Women get Hashi's more than men from what I read. There are several people on this site that have Hashi's.

Hi GFinDC,

I start on this whole adventure by reading a book about Hashi's. It is called "Why Do I Still Have Thyroid Symptoms?" by Dr. Datis Kharrazian. He strongly recommends a gluten free diet and my symptoms all match Hashimoto.

I think you are right though about the testing. I should have gotten tested first. Too impulsive. I regret that now. Thank you for confirming my suspicions.

Jeanne

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jester    6

Oh, huh. I found a new medical practice about two weeks ago when I began to suspect I may be celiac, and as it's a group practice I didn't have control over who I saw, but I noticed he was a DO and not an MD and wondered what the difference was. Now I know AND I get why he was so open to the idea of celiac and was informed.

(Still hoping he ordered the right tests, just because he hasn't had to order them very often regardless of being informed on it.)

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Takala    413

It's still possible to cross contaminate one's self with gluten easily, and think that one is doing the SCD correctly, or the NSD or LDS correctly.

Gluten free is another learning curve.

K. A. has had some moderators not behaving well at times re diet issues.

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Nancy19    1

Jeanne...your post above said Celiac can cause hypothyroid? Wow. I don't have Hashimotos, but I have been hypothyroid for over 20 years and it's been a struggle to get it under control. I haven't been tested for celiac yet but I have so many of the symptoms (especially the gastrointestinal ones...ugh) I'm pretty sure I have it. I never thought that going gluten free would be good for the thyroid. Definitely something to think about.

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GFinDC    609

Jeanne...your post above said Celiac can cause hypothyroid? Wow. I don't have Hashimotos, but I have been hypothyroid for over 20 years and it's been a struggle to get it under control. I haven't been tested for celiac yet but I have so many of the symptoms (especially the gastrointestinal ones...ugh) I'm pretty sure I have it. I never thought that going gluten free would be good for the thyroid. Definitely something to think about.

Searching for "autoimmune celiac"

I get this hit:

NDDIC Celiac Disease Info

What other health problems do people with celiac disease have?

People with celiac disease tend to have other diseases in which the immune system attacks the body’s healthy cells and tissues. The connection between celiac disease and these diseases may be genetic. They include

* type 1 diabetes

* autoimmune thyroid disease

* autoimmune liver disease

* rheumatoid arthritis

* Addison’s disease, a condition in which the glands that produce critical hormones are damaged

* Sjögren’s syndrome, a condition in which the glands that produce tears and saliva are destroyed

So, a nice little list of fun things we can expect. There are other lists with different disease listed. A search on "celiac associated condition" or "celiac related condition" will bring some up.

Ain't we got fun! Yes, but no bananas! :D

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