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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.

Family Thinks I Am Neurotic...
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They think I am purposely looking for things 'wrong' with my kids. I had a miscarriage 2 yrs ago at 12 wks gestation, and 2 wks later I was pregnant with our youngest daughter. It was a stressful time and I worried alot. When she was born I was very relieved. She was a perfect and easy baby. Very different from my fist 2 who never slept and cried all the time and ate constantly. As soon as I started introducing solids at 6 months things changed. Her perfect yellow seedy breast milk poo changed overnight to huge firm logs of poo that she couldn't even get out. I had to pull them out and she would scream in pain and crawl up my shoulder trying to get away from it. I had been giving her veggies, fruits (one at a time of course) and checking for reactions like you are supposed to. She loved to bite and chew so I would give her those gerber puffs that melt as well. It never occurred to me that it could be the puffs causing problems. I also fed her baby oatmeal. She was having so much trouble pooping I started giving her straight apple juice and prunes every day. It did nothing to help. I cut out bananas completely and it got better for a bit so I thought that was it. Then it was bad again so I took her off all solids and added them back one at a time slowly to check reactions. This time I noticed she reacted to puffs, cherrios, crackers, bread etc. I eliminated all those things and she got better. her poops were great and she had no pain. Then I gave her ONE cracker and she spent the rest of the day crying and was in alot of pain trying to poop, straining for the next few days and then finally pooping a horribly large hard thing that made her bleed. She also get similar problems when she eats cheese or has anything with milk in it. I took her off all those things and talked to her doc. He thinks she is too young for testing but told us to keep her off those things. My husband told me today that he thinks I go to far with her, that I am just so paranoid about 'keeping my kids safe' that I am actually looking for things wrong with them when there is nothing wrong. He asked me today "what if I told you I had been feeding her bread without you knowing?" I told him I would kick him if he ever did such a thing, and that I know he didn't do it because her poop would tell me. I told him " I do all the research, the studying, the doc visits, YOU don't. Talk to me about being paranoid and its all in my head when you HAVE done all these things." The more I research the more I understand the more I question my own possible sensitivity to gluten and my 2 older kids as well. I don't think I am being paranoid, I think I am being thorough. I really hate when I tell my husband that I have had bm issues for about 3 yrs and since going gluten free fell 100 % different he tells me its all in my head. When he told me drinking milk made his stomach hurt I didn't bat an eye and went out and got goat milk and lactaid for him to try to see if it helped. Then after he had been drinking no milk at all or lactaid he was suddenly able to eat beans and tuna. Foods he had previously not been able to eat because one caused him stomach pain and the other swelled his esophagus shut. Did I tell him it was all in his head and those things were unrelated? NO, I believed he was right. Sorry, long vent. I am just upset.

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It is upsetting!!! It is bad enough having our doctors not believe us and thinking we are being hypochondriacal, without husbands added to the mix. I think you are being an excellent mother (and wife :o ) although you would have probably liked to say something. Perhaps in time he will come to understand that your wee girl has some serious problems that you are trying to solve. Do you share any of your research with him, or is he just not interested?? He should be forced to read some of this stuff to be made to realize you are not just making this up, and that there is a direct cause and effect relationship to what is happening. Make him come along to a doctor's visit if that is the only way he will get to see the light. I am so sorry you are having to go through all this stress. :)

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It took a long while for my husband to get with the program. It was hard in the meantime and he would say things like that too. It made me angry, and made me doubt myself. He was probably just in denial. When I learned about the denial stage of accepting an illness it helped me to understand. Keep up your hard work being a good mother and he will eventually come around.

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You are most certainly not neurotic and sound like a great, and understandably worried, mother. I had horrible colic as a baby and needed special predigested formula. I have since suffered with all kinds of health and GI problems and am now just discovering that I am intolerant to gluten. You sound like you are doing everything right- trying to figure out what is causing your daughter's problems and making sure she isn't eating breads and such. It is hard to accept the diagnosis or potential diagnosis of any disease, especially when it is your child. It seems like it's easier for you to understand because you seem to have gluten sensitivities as well, so you can empathize with as well as actually see what's happening with your daughter. Your husband will come around eventually, but I'm sure it is very frustrating in the mean time. I hope things turn around sooner rather than later; patience, although needed in vast amounts from any perspective, can be hard to come by. Just keep doing what you're doing, and I'm sure it will all be fine.

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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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