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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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    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
    • So ok, I get the pain/bloating thing, but it still feels so crazy. But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy.  I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender.  I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant).    I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin.  1) when will I stop looking knocked up?  2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 
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