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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.

Looks Like My Daughter Inherited My Genes. :(
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I was diagnosed earlier this year and was waiting to get my kids screened until their next well child visit. My daughter started having some tummy issues that didn't resolve in the normal time if it had been a virus so I took her in and request the celiac panel. I don't have the results in hand but her iga was normal but TTG slighly elevated (normal is less than 4 and hers was 6). She has been gluten-light since my diagnosis as our main meals are always gluten-free to avoid cc so my guess is the low number is due to that. We've now been referred to a pediatric GI. We were able to get an appt at Univ of MD next Monday (yay!). I'm fully expecting a celiac diagnosis and I've been trying to get her mentally prepared for that. On to my question... do you think they will push for an endoscopy? A positive ttg is a postive, right? My gut says the positive ttg plus family history will be enough and I really don't want to put her through the procedure. I know it's a standard low-risk procedure. I had one and it wasn't bad just hate to put a child through that if it's not absolutely necessary and especially since she's been gluten light for about 10 months. Would love to hear some opinions...

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I have a positive IGA TTG and both genes, but a negative biopsy and the rest of the panel was negative. As far as i'm concerned, I have it.

There is something to consider though. She will be starting school soon, yes? To get accomodations, you have to have a positive dx. If so, she would be able to get a 504 plan and the school would have to accomodate her.

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I have a positive IGA TTG and both genes, but a negative biopsy and the rest of the panel was negative. As far as i'm concerned, I have it.

There is something to consider though. She will be starting school soon, yes? To get accomodations, you have to have a positive dx. If so, she would be able to get a 504 plan and the school would have to accomodate her.

She's in 3rd grade (turning 9 tomorrow). What accomodations would she need exactly?

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Lunch room accomodations, clean ups and what have yous. If they are doing a project (with plaster, playdough or whathaveyou item with wheat) she would need a substitute. If she is sick because of celiac then she'll be given time to make up the work without issue.

Celiac does fall under the ADA law (americans with disabilities act). Your best bet would be to call the school and ask to speak to the person who is in charge of the 504 plans. Tell them whats going on and see if they could give you some ideas of what they could do for her.

When i was that age, i was on a 504 plan for different things (see sig). They had a meeting with the teachers who would be teaching me and told them what i needed to have (ex. i had to sit in front row).

hope this helps some :) I know some things about such things.

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I am going to be in the minority here I know but I'd retest her in 6 months. Did they do the Ema test? If that was positive, ignore me and go gluten-free now. It is 98-99% accurate. My daughter was tested when her sister had celiac. She had a slightly elevated TTg and neg on ema. 2 GI doctors told metro retest in 6 months. We did and she was normal. We will continue to retest her but I wasn't willing to put her on gluten-free for life for a weak positive on only one thing (all other panels were normal). If she still shows high in 6 months, go gluten-free.

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Thanks for everyone's replies. An update: My daughter had her appt yesterday. All evidence points to celiac: ttg slightly elevated, slow growth (3rd percentile), recent tummy issues coupled with exhaustion and big mood swings. We have decided to move forward with an endoscopy following a long talk with the doctor. Bottom line, she needs it for an actual diagnosis and to get a baseline of the damage. She said this would be helpful if for any reason she doesn't improve on the gluten-free diet and needs to be rescoped in the future. It will also qualify her for various treatments that would be available in the future. She was seen by a doctor who does rotations in the Celiac Center at UMMS but the diagnosis would make her a patient at the Center for Celiac Disease Research. I want her to have access to the experts in the field so we're keeping her on gluten (surprisingly much to her dismay right now which I think is a sure sign she knows that's the culprit in what's making her sick) until the endoscopy can be done. I also called the pediatrician to get bloodwork ordered for my son to be tested before we convert to a fully gluten-free kitchen at home.

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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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