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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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My 12 year old son has been sick since before thanksgiving 2003, throwing up at least once a day and feeling terrible. The only thing the doctors could tell me was that he had gastritis and duodenitis. Finally, after several rounds of bloodwork, he was giagnosed with celiac disease. He has been on a gluten-free diet for a little over a week and still does not feel good, but has not vomited more that once during his gluten-free diet. We had our other 2 children tested, and they bot tested positive!! That means that 100% of my children have it. My husband and I were tested and I was negative, but my husband was positive. I am most worried about my 15 year old son who has had the symptoms his whole life, but was never diagnosed!! My 8 year old daughter shows no signs, nor does my husband. I find it odd that ALL of my children have this!! Does anyone have a similar situation??

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Thought I replied to this.

There are several out there like this. The family will all go gluten free. There is a yahoo group called celiackids that you might find helpful and there is a good book called Kids with Celiac Disease by Dana Korn (she is active in the yahoo group) also she has a book called Wheat Free Worry Free as well I have not read that one but I hear it is good. There is also a great cook book out there.. developed by a teenager with Celiac.. I am sorry I don't know the title.. I am sure it is on this site somewhere.

Hope this helps!

Denise

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I just wanted to say that it is not uncommon for a whole family to have Celiac, but you are fortunate to have gotten them all diagnosed! The gluten free diet is not the easiest, but it is certainly do-able and I would choose this over another disease that would require medication and/or surgery to fix. They say their is no cure for the disease, but the treatment totally reverses the damage in most people. It does take longer for a week to get real relief, so don't worry about your son. He will be feeling much better in a few months.

As for the dad and child who don't have symptoms, that is not as common, but not unheard of. Some people have the disease, but don't have ANY symptoms, or they have minor symptoms, but don't realise they are caused by the Celiac. They may actually notice that they feel better after a while and some little health issues just suddenly clear up. This happens for some people and they just don't realise they felt bad, until they feel better. They need the gluten free diet just as much as a very ill person, since the damage will continue as long as they eat gluten. Even in the symptom free person. Your son should get completely better, as long as he sticks to the diet 100%. I've had symptoms for more than 27 years. Others on the board were sick for 50+ years before diagnosis. It takes longer to heal and often more health problems come up (in the form of other related diseases) the longer you eat gluten, but I wouldn't worry about your son. He is still young and should heal fine.

The fact that all of the kids and your husband have it, that is just how genetics go. If one parent has it then the kids have a 1 in 10 chance of having it. That doesn't mean 1 out of 10 kids from the same parents will have it, it means that each child has that chance of getting the gene passed on to them. I have three children, all of whom are symptomatic for celiac disease, and I am having them tested. I have it and so I just figure they all have it too. I don't know if my husband has it, he won't get tested.

God bless,

Mariann

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your son should read the teens only section i am 13 and have had celiac disease since 20 mnth. you should think of joining a rock group, raising our celiac kids it is helpful for the kids and parents

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    • Celiac disease can be dormant for years til a strain/stress to the immune system makes it come out. Many of us have had this issues, your infection run in might have triggered the dormant genes for the disease if you had them. I would follow up with the testing, see about getting a full celiac blood panel if you can, you have to be eating gluten for 12 weeks daily prior to testing. http://www.cureceliacdisease.org/screening/

        If not celiac it could be another food intolerance/sensitivity I suggest keeping a food diary and tracking what you eat, seasonings, how it is cooked etc. And how you feel later. Change up our diet more and look for patterns.  Here is stuff to read up on. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Yeah , i will look into getting tested - like you say there is no harm in it . What I found very interesting is the part where you say "Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves." - I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me
    • Hi ,  i was thinking that an intolerance and allergy were about the same thing really but sorry if im wrong. I know celiac is an autoimmune disease but was thinking that is different again, more serious and was erring on the side of my possible issue not being that but more of the intolerance type. Clearly im just guessing though and dont know about this stuff , hence the posting for advice, The problem with trying to get tested is that in bolivia there are very limited tests and doctors are unreliable so you have to rely on yourself to certain degree. I have heard of a test here and was planning on looking into that but it made sense to try to get some opinions and advice online first so Im in a better position to understand if any tests here are actually reliable enough. I dont think there is an issue with travel parasites etc as I have already taken the medications thats would kill them like a course of albendazol and praziquantel and that was after a 2 week anti parasite cleanse. That did feel like it got rid of anything and the only issue I have been left with is this pain as described.
    • Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know.  At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves. I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask? Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it.  Best of luck!  
    • You can supplement if you want to.  IF you are low on iron or vitamin D - then some vitamins might be helpful.   The treatment for Celiac disease is a strict gluten free diet.  Some people need to cut out lactose for a few months, too.  The villi that are damaged in Celiac are the part that helps you digest lactose.  So, until they are healed, it might help to skip milk , cream, etc.     http://www.cureceliacdisease.org/faq/are-there-vitamins-created-specifically-for-nutrient-deficiencies-in-celiac-patients-2/  
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