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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 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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10 posts in this topic

Recently I posted concerning my frustration following a biopsy that revealed continuing villi flattening and inflammation after five years of being gluten free. The GI doc felt I must be still getting gluten somewhere on a consistent basis and urged me to take a closer look at what I eat. Well, I was certain I was not overlooking anything but to be sure I rechecked some things like meds and oral hygiene products and its all clean. Some of you suggested I might have refractory sprue.

I also asked the doc to run gliadin antibody tests and he wrote me a script for the blood work. It came back this week and here are the results:

TIS Trans Gluten IgA: 0.7 (Reference range is 4.0 to 10.0)

" " " IgG: 0.8 (Reference range is 6.0 to 9.0)

Anti-gliadin IgA AB: <1.2 (5.0 or greater is positive)

Anti-gliadin IgG AB: <1.2 (10.0 or greater is positive)

I find that interesting as not only were they negative but they were very low. If I was getting gluten in my diet wouldn't those antibody numbers reflect it?

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The most frustrating comment ever is "you must be getting glutened" I dispise that word because it implies you are failing. This is one of those diseases that blames the person if something goes wrong. There is alot of guilt associated with this diagnosis. If you are like all other celiacs you know what to eat and use as far as products and food goes. You probably know more than your doctor and or dietician. You know if you have been cheating and according to your blood test you are not. I feel that there are other unknown or known diseases that can cause the same symptoms as celiac. H pylori and SIBO can cause the same symptoms. Fungal infections are another example. Protien disorders were listed on my biopsy results. Unfortunately, once you get that diagnosis, everything must be related to it. Sometimes a cold is just a cold. I wish you luck. This forum would not be so popular and or huge if the answers were clear cut.

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Thanks for your encouragement, JodiC. I ran into my GI doc this week at lunch (we both work at the same hospital). He had just gotten back from vacation and I hadn't talked to him since the biopsy and now had the lab results back. I commented that the gliadin antibodies were very low and and that I thought this demonstrated I was not being glutened. He said, "Just keep doing what you're doing. There's nothing else to do." I asked him about the possibility of refractory sprue or some other rarer disease that also causes villi flattening. "No I don't think that's the case," he said. "You'll be chasing something there's no solution to." Well, he's not the one at risk for lymphoma of the small bowel from years of inflammation.

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Thanks, GFinDC, for that old string. I am contemplating eliminating as much soy and dairy from my diet as I reasonably can. One thing that I can't figure out is with all this inflammation still present, why don't I have any pain or discomfort? I fully realize that most celiacs don't exhibit the classic symptoms of GI distress but you'd thing that even if you do't have diarrhea, gas, bloatiing you'd at least have pain or burning or something. Are the nerve ending fried down there or something by now?

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Congratulations on 5 years of gluten-free!

Rather than tackling both soy and dairy at once -

Have you been tested for casein intolerance? (Would it help you to do so?) I think your odds are 50-50. Here's the study. casein & celiac

>eliminating as much soy and dairy from my diet as I reasonably can.

I'm pretty sure that, like gluten, you aren't going to see the improvement until you go 100%. I may be misunderstanding what you are saying here, but I don't think that reducing dairy in your diet will work.

And who can figure out the symptoms/lack there-of... Food intolerances are just plain weird....

My fave gluten-free/CF website for recipes is Elana's Pantry, but if you don't like almond flour you might prefer the godairyfree website.

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Rolling,

I recently had an ELISA food allergy panel done. All my research indicates they aren't very reliable but "milk' was one that turned up strong. Unfortunately, "milk" wasn't broken down into its various components that, each one, can cause problems. Where can you get casein intlolerance done? Is it a blood test? I had this test done to try and run down causes of nasal congestion/sinusitis. It turned up 30 different food allergies. I was overwhelmed and diidn't know where to start so I haven't done anything. Besides, are we talking about allergies or food intolerances? The ELISA testing deals with allergies. Villi flattening/inflammation of the gut have to do with intolerance/autoimmune disorders.

By the way, your link about casein and celiac doesn't work.

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Personally I feel like eliminating all the possible problems is the best way to go, that's why I follow a Paleo like diet. No grains, no dairy, no legumes. That removes pretty much all the top food allergens except eggs. If things continue I try to eliminate more and see what it was that was bugging my gut. For instance, looks like seeds and nuts are an issue with me.

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Clearly I am technology intolerant as well as gluten intolerant. Sorry about the problematic link.

Here's an excerpt, please google at will!

G. Kristjansson et al., "Mucosal reactivity to cow's milk protein in coeliac disease."

Kristjansson gave coeliacs casein and lactalbumin enemas and measured their inflammation response. 10 of 20 coeliacs had a statistically significant reaction and only 3 of 20 had no reaction.

One of fifteen controls had a statistically significant inflammation response. In fact only about half of the controls had no measured adverse reaction to the cow's milk protein enema.

The same author also showed a correlation between corn gluten intolerance and coeliac disease.

----

DH (who does not have celiac, BTW) has had a blood test for casein and whey at Immuno Labs (IgG) and Alletess (IgG and IgA). His problem is with casein. The ImmunoLabs test he did on his own through Directlabs.com. The Alletess he did through his doc, a functional medicine type. He doesn't have any allergies that would require an epi-pen, so these are all intolerances, if I am understanding the terms correctly.

With any luck, if you can get the villi fixed, perhaps you can clear up some of the other 30 food issues. Were most of them "mild" versus the milk that was "strong"?

DH's casein result was also strong and his other intolerances (not very numerous) were mild.

He had some intense withdrawal symptoms from dairy and a marked improvement all in the first week. I realize these tests are not entirely reliable, but I think this could be well worth your time and effort for a trial. So many people report improvement in their sinus conditions without dairy too.

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Thanks, GFinDC, for that old string. I am contemplating eliminating as much soy and dairy from my diet as I reasonably can. One thing that I can't figure out is with all this inflammation still present, why don't I have any pain or discomfort? I fully realize that most celiacs don't exhibit the classic symptoms of GI distress but you'd thing that even if you don't have diarrhea, gas, bloatiing you'd at least have pain or burning or something. Are the nerve ending fried down there or something by now?

Hi Trents,

I have seen some info about nerve damage due to malabsorbtion. It could be that is something to do with the lack of pain. But they do say some celiacs just don't have GI symptoms too.

OK, here is my wild theory of the week for you! I have also read that the antibodies in celiac disease are produced when the gliaden protein (from gluten) gets "stuck" in the intestinal lining (the villi) and then the antibodies attack the gliaden protein. So, maybe if the villi are gone, the gliaden doesn't get stuck in the missing lining and the antibodies don't get produced? No inflamed lining of villi to cause pain left perhaps? So not as much pain from antibody attacks. Ok, just a wild theory, nothing to back it up at all.

Here is a link to the Merck Manual online, down the page a ways it lists symptoms.

Merck Manual celiac

Malabsorption of vitamin B12 can lead to nerve damage, causing a pins-and-needles sensation in the arms and legs.

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