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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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Hello all.  I'm a regular old midwestern mom that is joining in for help and support.  Last week I found out why my 1.5 year old dropped from 25% weight to 3% weight at 12 months...and hasn't really grown since.  The Ped ran bloodwork *again* and she was 100+ for her celiac test.  I am taking her to the dietician tomorrow and my husband and I take her to the GI on Monday.  Due to her age it sounds as if they won't do a biopsy, but I'll find out next week.


There has been so much to read and digest in the last week - and I can only imagine so much more to learn!


First, I'm so, so grateful to have a diagnosis.  How cool that my baby girl is finally going to grow (!!).


Second, I'm mentally putting together a list of working through this with my family (we also have a 7 y/o girl and 3.5 y/o boy).  After meeting with the dietician and GI we're going 100% on the diet.  The whole house is going to be gluten-free.  I think I know what to take out, what to buy new, how to keep the house gluten-free, but there are a few other things that I'm already mulling over:

1. Do I keep my car (which also carries other peoples' kids regularly) gluten-free?

2. Do I make sure that nobody ever brings food into our house?  We are the "entertaining" house and do a ton of pot-lucks, shared snacks, etc.  Providing all the food/drink for so many all the time sounds remarkably scary!

3. Do you have your older kids wash hands upon entering the house every single time?

4. She is still nursing so I'll obviously be on the diet, too, but will things like my beauty products harm her via my milk?  If so, suggestions on products to use would be highly appreciated.



5. What do you wish you would have known then when dealing with your little kid?

6. How did you bill this to your older kids so they don't feel "slighted" by the changes?

7. Did you also get tested, along with the other members of the family?

8. Something hit me earlier today - it would be so easy to fall into this weird disordered eating issue.  How to avoid this?


So many questions. :)  Thanks for any help you can give.  Just reading this particular forum has been so incredibly helpful to get my thoughts focused.




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Because Celiac disease is genetic and you must be eating gluten to get a positive result - get all the kids and you and the dad tested before eliminating gluten.  Good to know right now how many of you actually have Celiac at this point. 


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Yes, thank you for that.  We haven't altered our diets yet - waiting to see the doctors first to see about additional testing.


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Hi, I have celiac disease and my husband has been gluten free for 12 years (no formal diagnosis).  


Here's a few answers to some of your questions.  I'm sure others will follow!


  • Gluten free cars
  • Daughter (not gluten free) must wash her hands when entering the house (gets rid of the germs too!)
  • All playdate snacks are gluten free (homemade popcorn (cheap), fruit, potato/corn chips, ice cream, yogurt, gluten-free cookies (they don't even notice)
  • I'm the cook, so most family parties have always been  at our house.  I made most everything but have them bring drinks, potato and corn chips, gluten-free salsa, uncut fruit like grapes or I cut up when they arrive, salad fixings that I throw together, paper goods.  They  admit that they like lettuce wrapped burgers!


I don't think my daughter has ever felt slighted by our going gluten free.  I pack up her lunch with pre-packaged gluten foods (e.g. goldfish, cookies, frozen P & B sandwiches).  She's learned to eat a BLT on gluten-free bread and spaghetti on gluten-free pasta and as long as I bake homemade gluten-free baked goods, she's happy.   Our dinners have always been gluten-free her entire life!  


She does eat Cheerios but she uses her own bowl and I pour the cereal and be sure to clean the counter (we use a separate area).  She like rice porridge and eats Rice or Corn Chex.  My friends bake gluten goodies for her and I freeze them for her lunches.  


She goes out for meals with family and friends -- a nice time to bond. 


I would be more diligent about keeping gluten safely away from your baby.  They put everything in their mouths!  


Hope this helps!


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Thanks for your reply!  I'm going to start keeping lists of appropriate snacks - love your suggestions!


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    • I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha  
    • Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body.   Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.
    • The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.    
    • I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated:  Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon.  They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin.   In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing!       *apart from the bits which are in my head  
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