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Daughter Just Diagnosed
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Hi I just joined this board and i am happy to have found one !!

My 5 yr old daughter has been having trouble for years finally her belly pain got so bad over the christmas holiday that my pedi. sent her for x-rays and blood work she called this morning and said she tested positive for celiac. We have not contacted a GI yet she can get me in appt. at the end of january so i will call around on Monday to see someone sooner. Is she going to need a biopsy? is that how they confirm the blood results? Where Do i begin I went to Trader Joes and got a bunch of gluten free foods hoping she will like the. any suggestions on good books especially cook books? Any help would be wonderful

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Welcome to the message board. If your daughter is going to have a biopsy, she should not be gluten free until after the biopsy. I went gluten free the minute my biopsy was complete, because the GI doctor said he was absolutely sure it was Celiac. You should discuss this with your doctor, if he or she knows anything about Celiac disease. I know this is a difficult decision to watch her suffer while you await a biopsy. When you do start the diet, try Trader Joe's, Whole Foods, Henry's or Wild Oats. All of these places have some gluten free products. Also there are many places on the web where you can order, treats for her. Read the Celiac.com website about what she can eat. Learn to carefully read labels. Try finding a book by Danna Korn on raising a Celiac Kid. There are support groups for parents called R.O.C.K. That is a good place to start also. This is all very confusing, but with a good attitude and a kid who's cooperative you should have a healthier child in a few months. Good luck, Shirley Whitley

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Hello emsmom! My 4 year old daughter was diagnosed with celiac disease 8 mos ago. She has insulin dependent diabetes (type 1, diagnosed at 10 mos. old) and her doctors test her for related diseases/disorders annually. She was seemingly symptom free and they said she had celiac disease. I didn't believe this- eventually we followed up with a biopsy and she really does have celiac disease.

Like aramgard said, you shouldn't go gluten free until she has the biopsy since you may interfere with the positive result. Once you go g.f., her wonderful body will begin to heal nicely-- While waiting for the biopsy, I was so conflicted. I felt like I was feeding my daughter poison all day long. Since being Gluten Free, her diabetes is more easily managed--- so her crazy rollercoaster blood sugars were her celiac disease symptom, which makes sense now, considering it is a disease of malabsorption. I also have had a few incidents where she's gotten awful stinky gas for a day or so and I've chalked that up to some hidden gluten she's gotten.

Anyway, Read package ingredients diligently!! Learn the hidden glutens. You won't believe where it is. (Did you know that most soy sauce has wheat? But Eden makes a wheat free tamari that's great.) Contact companies when you have any questions about their ingredient list.

There are some very good cookbooks out there and some decent gluten free packaged foods at the health food store. Our favorite breads are Rice Almond or Rice Pecan made by "Food For Life", found in the freezer section of your health food store. My Shoprite supermarket is now carrying this and other gluten-free items! We think the best rice pasta is make by Tinkyada. Follow package directions closely. Eating rice pasta takes a little getting used to- but we really like it. Lifestream makes Buckwheat wildberry toaster waffles that are really delicious. Van's makes several gluten-free waffles too. Kashi makes a gluten-free cereal called Cranberry Promise that's yummy. Envirokids makes several cereals: Gorilla munch and Panda Puffs are good. My daughter lives on corn tortillas with black beans and cheese, chick peas, brown rice, peanuts, cashews, fruit, popcorn. She doesn't eat meat. If you do, there are more choices out there.

The cookbooks I use most often are "Incredible Edible Gluten-Free Food for Kids" by Sheri L. Sanderson (really good tapioca bread, chicken nuggets, sugar cookies and more) and "The Gluten-Free Gourmet" by Bette Hagman. I also use a general substitution of 1 cup brown rice flour and 1/4 cup tapioca flour to each 1 1/4 cups wheat flour and that usually yields a good result.

The biopsy experience was no fun for me-- but I think my daughter went through it really well, and was outside playing later that same day. The results came in about 1 1/2 weeks.

Her pediatric gastroenterologist is part of Dupont Children's hospital in Wilmington, DE. and they made the whole thing really bearable.

Take care. You will get the hang of this sooner than you think.

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Thank You

I was not aware that she needed to stay off the diet for the biopsy thank you again I actually called a GI on call at our local childrens hosp and he confirmed what you said. I am hoping she wont have to wait to long for the biopsy she is in alot of pain and discomfort. her belly pain has been getting worse over the last 2 months she is vomiting quite a bit and it wakes her up at night. I found her laying on the bathroom floor crying her belly hurt so bad. I am a upset that the dr's did not catch this sooner. She has had stomach trouble since birth and i kept pushing that dr's to find out what was going on. They thought she had Diabetes last year her sugar was out of control up around 270-300 2 hrs after eating and then it would drop into 60's so they put her through so much and now I wonder if her crazy sugar readings were from celiac disease. I also just started to take her to see a therpist because she seems foggy alot tends to forget simple things I noticed this alot at home I thought it was just a personality trait but her kindergarten teacher mentioned it as well. Now I wonder if it is also related.

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emsmom,

All of the symptoms you listed can be caused by celiac disease. I hope they are able to get your daughter in to see the GI sooner. I am going through testing on all three of my children, and have gotten appts. for them for this month. I hope yours goes well, since it sounds like your little one is sicker than mine are.

God bless.

Mariann

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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