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Where Do I Begin?
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7 posts in this topic

Hi !!

My 5 yr old had a biopsy a month or so ago and that came back neg. Her initial blood test came back post. So here we are GI dr says its not celiac. and wants me to try bio medical feedback for pain wothout even telling us why she is sick all the time they have no answers. She is constanly comp[laining about stomach pain and headaches her belly is almost always swollen, She asks me to make it stop, I don't even no what to do to help her. So dad and I deceided as well as her reg. Pedi to try going gluten-free and see if there is improvment. So here is my question Were do I begin????? She is a fussy eater already but she will eat fruits veggies and some meat are these all ok? do you find any brands are best tasting for kids? please help

I walked around trader joes dumbfounded. any recipes or premade suggestions would be great !! thanks

Also I got the name of a GI dr in Boston do you think I should get A second opinon does anyone know of a good pedi gi in boston-metrowest area?

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Hi Emsmom, I suggest going to your local library and looking for general books on Celiac Disease and cookbooks on gluten-free diets. There are lots of good ones! Also, this site and many others have excellent info for you; it may seem overwhelming at first but it gets easier.

The diet is NOT as restrictive as it may seem at first as you can find or make good tasting gluten-free substitutes for almost everything--even bread and cake! Also, online stores like the Gluten-Free Pantry are very helpful--you don't have to scrutinize what you buy there.

I think trying a gluten-free diet for a while might be just the ticket! I really hope Em feels better soon! :)

You might want to get tested yourself if it turns out she responds well to the new diet.

Best wishes!

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A negative biopsy could just mean that someone didn't see the damage. Perhaps the biopsy site is not one affected, or maybe the lab tech didn't think the villi was flattened enough. Go with the positive blood tes, and try being gluten-free. The diet is not as bad as others make it out to be. Just avoid processed foods. Stick to meat, fruit, and veggies, and if you are able, the store listed above is good, and so is the GlutenFree Mall. If you have questions, most of us are happy to answer the ones we know about. Good luck to both of you!

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I agree, I think I would do the gluten-free diet at this point. My 4-1/2 yr old has always been pretty picky, but we have found some things she loves. She is eating like a horse now, it is just shocking! We had to take her off dairy for right now, she was having too many GI problems, but we should be able to get her back on it later. That is hardest on her, she loves cheese and yogurt and milk. We have the incredible edible gluten free food for kids by Sheri Sanderson. There are tons of recipes I can try once she can have dairy again, but for now she LOVES the porcupine meatballs. She seems to really crave protein in general, so I also keep deviled eggs on hand (Best Foods Mayo and French's mustard) She also likes the gluten free pretzels and Ortega taco shells (she often eats them like a chip) Fruits and veggies are great, she won't eat veggies really well, so I really like the porcupine meatballs ( they have V8 juice in them). She has regained the 3 pounds she lost in the last couple weeks, and is probably a 1/2 to 1 pound over what she was before she started losing weight. We have had problems with the bread. I think the longer since she has had gluten bread the easier it will be. Once she can have milk in baked goods again we will try some home made breads again. Oh, she also loves the Bob's Red mill pancake mix with Smuckers fruit syrup. (I put a dash of her baby brother's rice cereal in it to add some iron when she isn't looking!) We also have her on Ensure. Watch her vitamins if she takes any (good idea to) Flinstones is what we were using, but they couldn't guartee all ingrediants were gluten-free, so we had to switch. Good luck and let me know if I can help with any more suggestions!

Michelle

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Hi Emsmom,

I live in the Boston/MetroWest area. My daughter's pediGI doctor is Dr. Glen Furuta of Children's Hospital. He has appointments in Boston and Lexington. We really liked him. My GI doctor is Dr. Crimaldi in Milford, MA. He sees children as well as adults... also very good.

After a year of being gluten-free myself, and 4 months with my daughter gluten-free, I have finally managed to be able to fill my grocery cart at Shaw's (they have a great gluten-free section in the Wild Harvest section of their stores) and their store brand products are listed in the CSA Celiacs Gluten Free Product listing guide.

If you want, I can forward you my weekly shopping list! There are a lot of "mainstream" products your daughter can eat! My daughter is 8. I have to say planning meals for her (outside of the home) is more challenging than myself most days!

Let me know how much info you need!

I found the gluten-free books to be a bit overwhelming at first!

Take Care,

Ruth

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Ashlee's Mom,

Hi -- I just wanted to add that if you haven't tried corn bread for your daughter yet she might really enjoy it. There are some good gluten-free mixes on the market, but I also use the regular Indian Head brand available in most supermarkets & use the recipe on the back. I am also lactose intolerant right now so I substitute soy milk (Silk brand) for the milk and it comes out fine. There's some iron and folic acid, etc. in Indian Head so it's got some nutrition...my kids like the corn bread with honey or jam.

Ellen

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My daughter's GI doctor is Dr. Nurko at Children's Hospital. Another excellent dr at Children's is Dr. Markowitz, he's a nutiotionist.

Depending on where you live, there is an AWESOME store in Stoneham Mass on Main St that I go to all the time. The Natural Food Exchange. They have all the good stuff that I think every child should have. Chocolate Chip muffins by Kinnikinick, Dinosaur Chicken Nuggets - Wellshire Kids (I have also found these at Bread and Circus), Schar pastas, Schar Breadsticks - the crunchy kind, Enviro Kids Frosted Flakes and Organic Rice bars, TONS of different kinds of cookies and snacks, donuts, Kinikinnick sandwich bread etc..

They also have Gluten free vitamins, skin lotions etc. There is a really great selection of gluten free foods and I love bringing my daughter there because it is all seperated, so when we go in the gluten-free section - everything she looks at she can have. It brings tears to my eyes, to be able to answer that awful question "Can I have that?" with a YES YOU CAN!

Another thing that I have found at Bread and Circus is Heinz Cream of Tomato Soup - it is Gluten Free but you wouldn't know it unless you looked at the fine print where it actually states it. I think they are afraid of scaring off the gluten lovers :P .

Well I hope this helps a little!

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
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