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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.

Oh My Tummy!
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6 posts in this topic

I have had TWO Endoscopies with bisopys, and TWO rounds fo the blood test, no sign of celiac disease. So after 2 weeks of gluten-free'ing I had some gluten on Sunday. Couple little cake thingys at a chuch function, that was around 1130am or so. Felt fine rst of day, and then at dinner for some reason that I do not know remember (brain fog prbly LOL) I order a burger and did not tell them to keep the bun. Prbly been 4 years since i had a bun on my burgers, maybe once or twice in that period but I realy like burgers better with out the bun. That was around 6 or 630pm. Felt fine after that too... well for a while. Then at around 3am I woke up with a very bad stomache ache. Then around 445 when I get up and do my morning bible reading I could not focus at all, and had tons of gas/etc and stomache still hurting (even now at 7am).

BAH!!! :angry:

I guess that means either the four tests missed celiac disease, or it somehing thats normaly found with gluten like Dairy, eggs, etc. BAH. Why cant this be easy????? Maybe that test kit I ordered from Great Plains Labs will have a clue in it, I just hope I can get my doc to sign off on it so that its covered.

I have had the skin prick test for jsut about every food I eat and non of them should any re-action at all.

BAH!!! :angry::(

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Sorry to hear you're feeling crummy. :( I bet it's the gluten though. With your son's celiac it just seems so likely.

I just recently read a post by a lady on a Dutch celiac board where she'd had three rounds of tests (blood&endo), and only the last one detected damage. It had just not progressed far enough before then to be detectable. Kudos to her and her doctors to keep testing I must say. Although personally, I would have gone gluten-free long before that (as I did, lol).

hang in there,

Pauliina

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Vincent, Sorry to hear you're not feeling great.

So your tests are negative for celiac disease, however, you may have gluten intolerance without any detectable damage. I still think you should remain gluten free.

I had a mini cheesecake when I was intending to have a biopsy and I was fine BUT then I had 2 slices of bread and thought I was going to die. Took 10 days to fully recover. Specialist says the absolute worst thing thing we gluten sensitive can eat is bread.

I have read a lot of your posts and it definitely sounds like you have a problem with gluten, especially with your son's history. He got it from somewhere!

My 2 cents worth. Hope you feel better soon!

Yvonne

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Hi, Vincent--So sorry that your not feeling well. Bummer, I know. I have to say that your symptoms do sound like they're gluten related. And the family connection with your son. Maybe the new tests will uncover something--I hope so! At this point, I would listen to what your body is telling you (since the tests won't tell). I wish I had more to offer :)

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Sorry to hear you have been feeling bad...since you know you have a problem with it and see even some improvement on the diet what is keeping you from following it? You have nothing to lose and everything to gain by it. Even if it's just an intolerance and not celiac you definitely seem to have an issue...I hope you get feeling better here soon :)

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Sorry to hear you have been feeling bad...since you know you have a problem with it and see even some improvement on the diet what is keeping you from following it? You have nothing to lose and everything to gain by it. Even if it's just an intolerance and not celiac you definitely seem to have an issue...I hope you get feeling better here soon :)

Well if it was just me, probably would. But I ultimatly need to know if theres somthing else, for my son's sake. He seems to have inherited most of my umm "issues" so if theres some other intolernce here, I want to know to watch him for it too.

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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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