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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.

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I am afraid. I am reading about how tricky it is to diagnois this disease. Is there an age that it might be undiagnoseable? My son is 15 mo old and they did the blood work to day and on Nov 3 we are doing an endoscopy and a colnoscapy and a dumping study. Is it better to wait or go ahead with the test. When my son was born he weighed 8lbs7oz and he is now only 19lbs15ozs. I am very confused adn don't know what to do. I have 5 children how do you cook with out putting the rest of the children and yourselves on the diet? He got sick at 3 mo old when I started him on baby cereal. I see alot of your children just like my son. Heelp I am despart for answers?

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Hello. Try not to be afraid. I know it is scary. My 19 month old doesn

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I'm not sure about doing an endo at 15 months......not sure it's bad, either, but just questioning how old one should be before undergoing slightly more invasive testing. I know I've seen posts about how young is too young for the endo; try a search.

I'm almost 14 and I have a nine-year-old brother (almost 10). I'm the only one in my family who has celiac according to bloodwork, though I think my mom has it cause she gets bloated after eating large amounts of gluten and my brother might cause he is REALLY skinny like I was....he weighs the same that I did at his age. Anyway, if you have five children, four of which aren't celiac and yourself...mabye a husband.....then it would be quite expensive to go on a gluten-free diet. People will tell you that you just need to avoid the special products, but that leaves you with Lays potato chips, a select few other mainstream brands, and then the basics (fruit, veggies, meat, etc.). While this is okay for adults, it isn't very child-friendly....anyway, I you don't need to put your entire family on the gluten-free diet. You do, however, need to be very careful about keeping all the foods and cooking things separated and making sure everyone in your family knows how serious this.

You'll need separate pots, pans, a toaster, and cooking things (spatula, whisk, etc.). You may not need all this right away, but you will eventually. Make sure that if you use one fork to stir some gluten-noodles, you do not use that same fork to stir something else or to feed your little one. If a knife goes into a jar of jelly or peanut butter or cuts butter, then touches a glutened food and double-dips, it has just contaminated the food. You'll read this all over, but it's important to be really scrupulous about this. Read around and you'll find some posts on cross contamination. I remember quite a few, but don't recall where they are on the board....a quick search should take care of that.

-celiac3270

P.S. Oh, I forgot to mention, keep a postive attitude....you'll get used to coping with the diet and however long it takes, eventually it will all fall into place. If it takes you a year to learn the diet and eliminate all the hidden sources of gluten from your child's diet, it's okay. You're lucky to have caught it this early, so if it takes awhile to work out all the specifics of the diet or if you mess up a few times, don't panic. :D

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lol... I'm one of those people who'd say you can just stick to naturally gluten-free foods. I guess my kids (years in the future) are going to be shocked when they get to school and see food come in packages. ;-)

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This is the worst part of diagnosis -- the waiting, the panic, the grieving, the worry. Consider yourself lucky that your doctors thought of celiac as a problem. It is also easier to manage a child's food allergy if they are very young. But a healthy life is precious, and worth the effort.

My advice is to go slow, don't read too much (it just gets so overwhelming to try and figure everything out and raise a bunch of kids) and do whatever works for you. For some people, that's "whole food" cooking. For some, it's everybody goes gluten-free (but that is very expensive if you are using prepared foods). Some people very successfully have a "split" household. For most of us, it's some combination of those depending on the day of the week and how much else we have to do.

My son has been gluten-free for 1 year, November. My husband is probably celiac disease as well, and it took us this long to think of half the family being gluten-free as a real problem. It's just part of the routine now. You're going to feel overwhelmed for a while, but it will get better. Take it day by day, activity by activity. You can do this!

Joanna

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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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