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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.

Positive Panel, What's Next?
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Hi all...new here. My daughter's ped recently did an extensive blood draw on her and her Celiac panel came back with red flags. I don't know exactly which (thinking iga) but the ped said it definitely showed levels indicating possible celiac disease. I have read that true diagnosis is confirmed through biopsy. Then, I've also read about endoscopy. Are they referring to the same thing, just specific method? My daughter is 15 months old and terrified of others (esp. docs) so I'm guessing they have methods where anesthesia is allowed? So I've read, anyway. I know you guys probably get this type of message all the time, so I'm sure I'm asking the right folks. I guess I'm just trying to figure out what to expect next. We don't see the Ped GI until mid-November.

Thanks much!

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First, she must continue eating gluten. The biospy is done by the endoscopy and, yes, she'll be sedated. She should also get an amnesiac and shouldn't remember a thing. Ask the doctor how many samples he takes -- it should be 10 or more.

richard

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Hello. We are in a similar situation. My son is almost a year; and after a month long run of diarrhea his ped. ran the celiac panel; and he came back positive for the IgG and IgA antibodies. The ped. said "he has celiac disease, he needs a gluten-free diet'. So last week we went to the ped GI dr. and HE said based on those lab tests he isn't yet convinced it is celiac. He drew more blood for a bunch of lab tests; including some food allergies; and more extensive celiac screening (I think he is testing for 'total IgA or something...if that level is low then the blood test isn't accurate anyway). They are also testing his stool for fat. He said to go back on gluten - and see how he does. Then; if based on those labs it still looks like celiac then my son will have an endoscopy to take biopsies. The ped. GI mentioned our problem could be 'toddler diarrhea' - which toddlers sometimes get because their digestive tracts aren't mature yet. This can sometimes last until potty training. It's a bummer you can't get into the ped. GI sooner - so they can start ruling things out and finding a diagnosis soon! Renee

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Thanks Richard & Renee for your input. I'm not sure how extensive the Celiac panel was that they ran, but I know my daughter's ped wouldn't go so far as to say that it was definitely celiac disease. I think they should leave that up the GI folks, anyway. She did say to keep a stool sample stored in the fridge in case they wanted to check that out as well. My daughter doesn't really have diarrhea very often at all, but she's failure to thrive and has the irritability as well. I thought the wait to see the GI was long myself, but then I was told my friend had to wait up to 4 months so it didn't sound too bad! Does anyone happen to know how long the endoscopy takes and if they usually let the parent(s) accompany during the procedure?

Jen

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I THINK most places will let you stay with your child at least until he or she is sedated, and probably the whole time. The procedure itself doesn't take more than 20 minutes, maybe not even that long. It takes different people different amounts of time to come out from under the sedation.

richard

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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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