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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.

I'm New To This....could Eggs Be The Culprit?
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Hello everyone,

First off - thanks for all the wonderful dialogue on this board. Where would we be without the internet for information sharing??? WOW

Anyway - a little about me. I was accidentally diagnosed with celiac disease in June, 03 by way of a biopsy during an enderoscopy (throat scope-whatever that's called). Anyway - after some initial research and preparation, I went gluten-free on September 9th (I have not had a beer in over 4 months - not even a sip - and it's near killed me...ha). Ok, on with the serious stuff.....

I have been gluten-free for 4 months and a week (with only one "known" accident). I can't tell you that I feel better because I was asymptomatic in the first place (as I said, I was diagnosed accidentally while ruling out a GI problem for some female problems I was having at the time). I have two questions for all of you:

1) When I had my follow-up appt. last week with the GI doc - we couldn't measure my improvement by talking about my symptoms because I never had any to begin with. So, he did a celiec-panel bloodwork to compare it with my baseline that I had back at time of diagnosis. He said I was improved in every antibody test (I think he said there were 4 or 5 categories?) that they ran. I went from a total antibody count of 308.6 down to a 26.8. I was elated (because that is over 90% improvement). But he basically said that, "if I thought I was gluten-free to think again...beacuse if that were the case my antibody levels would be at zero". After that comment, I wanted to kick him in the you-know-what. But I didn't. I was feeling so down after my appointment that I went and ate a half of a pizza (but no beers). Again, absolutely NO SYMPTOMS after having a half of a pizza and some fried cheese sticks. OK - so I haven't fallen off the gluten-free wagon - just had an angry episode. I just need to try harder to get that to a zero, I guess. I need to be more careful about cross-contamination and make less assumptions that things are ok. But it's very difficult when I have no outward symptoms to gluten.

This leads me to my next question.

2) It seems that since going gluten-free, I am reacting to EGGS. I seem to get terrible rumbling stomach pains and have endless watery diarrhea (like turning on a hose-sorry) shortly after I eat eggs. Could that be a culprit? And if so, how do I really find out if I am allergic to eggs? Is there a blood test I can ask the doc to order to determine if I am allergic to eggs?

Any advice or words of encouragement would greatly be appreciated at this time.

Thanks, in advance, for your support. God Bless.

Jen

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Hi JEN,

It could be the eggs causing problems, but it wouldn't change your antibody levels to gluten. Although after 4 months the tests would not necessarily be at "zero" some people take 6 months or more to be able to reduce their levels to zero, and yours were exceptionally high. I have a few questions for you.

Do you routinely have anything else with the eggs that might also cause a problem?

Was there a significant amount of damage in your intestines, and if there was did you stop having dairy products, at least temporarily to allow yourself to heal?

As for testing, you could ask your doctor to order the RAST food allergy testing. They take a blood test and check for IgE reaction to certain foods, eggs being one of the top eight. The others being wheat, soy, milk, shellfish, fish, peanuts, and tree nuts (like walnuts or pecans). There is also a more detailed test of more than 100 foods, and I don't know much about that one. I know that with most true food allergies the reaction is typically outward, rash, hives, throat swelling, and such. Food intolerances are typically GI reactions. They are also harder to test for. You could check your self by doing an elimination diet of the suspect foods,

I imagine it would be hard to stick to the gluten-free lifestyle when you didn't have symptoms to begin with. Try not to have too many of those "angry eposides" though. :rolleyes: You don't want to continue to damage yourself inside.

By the way, did they ever figure out the "female" problems you mentioned. I was just wondering if they were caused by the Celiac Disease?

God bless,

Mariann

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Hi Jen,

I'm getting ready myself to go on an allergy elimination diet and cannot have eggs while I do that. When I add them back in I'll be able to tell if I can take it or not. I have grown not to trust lab tests so I'm in the mindset to listen to my body. Good luck !

Mariann.......you have such wonderful information, we're lucky to have you here :).

Lily

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Thanks Lily, I'm happy to share. I've always had a weird obsession with medical books and since I got on the internet it's been insane! :P I just seem to absorb what I read, at least when the topic interests me. My sister and a few of my friends lovingly refer to me as Dr.Mariann and call me to ask me what I think about their symptoms before they call the doctor... I study my medical encyclopedias and love to do research. I think it is because I have been suffering from the effects of gluten intolerance since I can remember (my earliest symptom I can remember was at 4 years old) and since the doctors couldn't figure it out, I have been on a lifelong quest for health...

God bless,

Mariann :)

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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