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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.

Need Moral Support And Advice For My 4Yo
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Hi Everyone, I would love any advice from parents of young kids with celiac for the first few months. And I just need reassurance that I'm on the right track. The problem is I have a celiac specialist but my son hasn't seen one yet so I don't really have anyone to ask. His old GI, who did the testing and endoscopy doesn't believe he has celiac so I can't really ask her if he's on track. (Just for background, my son has had slow growth and weakened teeth for a few years, I thought he was tested but realized he wasn't tested for celiac, then this summer he started getting major diarrhea. He's actually had diarrhea almost daily since August. Also he has some poor nutrient levels and other signs of illness on blood work up. First couple of celiac blood tests came back negative but, because of diarrhea, GI went ahead with endoscopy/colonoscopy. I also talked her into doing another round of tests and she did full panel through Prometheus. He came back with DQ2 gene, which I have (as well as diagnosed celiac) and a strong positive DGP IGA. Biopsies were negative, but I'm having the pathologists at another hospital look at them.)

He's been off gluten for two weeks and still having diarrhea and bloating. I'm trying to be patient and also realize the gluten-free diet might not cure everything. I'm pretty sure lactose is the issue because I've tried to keep him off it and he seemed to do better this weekend. But today I let him have macaroni and cheese (gluten-free of course) and he blew up like a baloon and had pain and diarrhea.

So I've cleaned out my kitchen, trying not to eat out or get processed food, now I'm goiing to keep a food and symptom log for him and be strict about lactose. But please tell me I'm on the right track. I see a celiac specialist on the 28th of November. I hope she can confirm his diagnosis or at least confirm something besides indigestion is wrong here.

Also, is there anything wrong with giving a little lactaid to get him through Thanksgiving? I mean, whatever's on the menu, I get to drink wine! The kid should at least be able to enjoy some gluten-free cookies and dessert with gluten-free ice cream.

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From the reading I have been doing lactose intolerance can go hand in hand with celiacs. All of my family have a problem with dairy. We drink coconut milk instead, and there is coconut icecream that is delicious! So Delicious is one and my favorite is Larry and Lunas icecream - it tastes like the "real" thing.

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does he play with playdough? or anything that has gluten in it?

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He might be able to get some lactose back, but first he's going to have to go off of it for a while, because the same part of the intestine lining that got damaged by gluten, is the part that digests lactose. If he's really sensitive to all dairy now, there are lots of non- dairy alternatives, as mentioned above. And there is no reason I can think of that gluten-free cookies cannot also be made dairy free cookies, with all the milk alternatives and butter alternatives for the "fat." (you can even make cookies with olive oil, besides palm shortening or coconut oil) He may be able to eventually handle things like butter, cream, yogurt, hard cheeses in reduced quantities, if he does not also have a casein (milk protein) problem.

Of course you are on the right track, don't let any doctor tell you that a major gut malfunction is "normal" if it responds to the elimination of a food protein category, with that family history, symptoms, and the blood test result.

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:) You are a GREAT mom and are on the right track! It is difficult at first and you will definitely find your rhythm. We talk all the time about how awesome it is that ice cream is gluten free (we often eat the coconut milk ones and have made three batches of homemade ice cream for Thanksgiving--lactose free, one dairy free).

Yes, find some non-provocative "treats" for him for Thanksgiving...and keep telling him/yourself that having Celiac helps you be really healthy--that you're taking care of your bodies so you can really enjoy life!

BTW, our twins and I were all diagnosed this calendar year. Last Thanksgiving one of our girls ate tons of pasta and vomited a half dozen times after our feast. I promised her I wouldn't serve pasta of ANY kind this year. She was so thankful! Sometimes it's about feeling "not bad" and sometimes it's all about feeling good!

Thinking of you! Happy Thanksgiving!

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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