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Biopsy Shows Early Or Well Treated Celiac

gibsongirl

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gibsongirl Newbie
gibsongirl
Posted

My 7 year old son has always had multiple food allergies and horrible stomach aches, bowel issues, vomiting, gas and hives all of the time-since birth. This winter, he lost 5 pounds in a month and had to be hospitalized for dehydration after he became afraid to eat because of the stomach aches and vomiting. He also gets this weird blistery rash around his mouth. He is in the 3% for weight and the 90% for height, much too skinny for his frame. We also had him screened due to pressure from the teacher and found out he has ADHD-to me his behavior seems worse on wheat-which he was allergic to when he was younger.

The only time in the past two years he has been better was when he was off gluten this summer while screening his younger sister for celiac-her biopsy was inconclusive. We also do have a family history of inflamatory diseases on my side of the family including Rheumotoid Athritis.

The gastro called two weeks ago after his endoscopy and said he didn't have EE but did show early signs of celiac or celiac that was well under control because we keep taking him off wheat due to the hives. He also had some narrowing in the esophogus where it empties to the stomach. He was on wheat for only one week before the endoscopy. Then we took him off, got the biopsy results and had to put him back on because she wanted a blood test-his level off wheat earlier in the winter was 1/negative. Put him back on for a week again-hives, stomach upsets, bowel issues, gas, bloating, headaches, body aches. Got this and the other blood test after only one week on gluten because he was MISERABLE. Now she called last night to say two weeks more wait for the blood test but maybe we should take him off wheat because he may be allergic to it. We go see the allergist in March. If those results are inconclusive she would like to put him back on gluten for 6-8 weeks and repeat the endoscopy.

We are proceeding as if he has celiac because of the biopsy showing signs of early celiac and because he got better last summer when off gluten for three months. He grew, his food and environmental allergies were under control, his behavior was better. I just can't shake this feeling that the gluten is making him sick. I am reluctant to do a repeat endoscopy, he is just a little boy and it's scary for him. But is it normal for the doctors to be confused like this? Has anyone else had to just go against what the doctors may or mmay not think in order to get their child better?

And almost as important, is there a gluten free bread that tastes alright? We can cut out most of the gluten processed foods, but we do need a gluten free and dairy free bread to get through the day around here. We have tried a half dozen kinds-we need egg, milk and nut free in addition to gluten free.

The other day I stood in Whole Foods and just wept because after an hour my carriage still wasn't filled and I was so overwhelmed by all of this. Totally out of character for me and I need to just move on. Any advice is appreciated

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ravenwoodglass Mentor
ravenwoodglass
Posted

This is only my personal opinion but I would keep him gluten free and consider the biopsy that was already done, combined with his response to the diet enough. I would not torture this poor kid any further so that the doctors can have enough damage for them to be happy. Keep him and his sister gluten free and let them heal.

Wolicki Enthusiast
Wolicki
Posted

I agree, stay gluten free and forget the tests! The answer for the bread is Udi's gluten free. It comes in whole grain and white. Soft and delicious and doesn't need to be toasted.

nmlove Contributor
nmlove
Posted

I'm confused as well. Seems like the doc said it looked like celiac so why wouldn't it be? ??? If he's showing an allergic reaction, all the more reason to keep him off. I'm sure others know this but I had no idea. When I was at my boys' follow-up yesterday (3 months gluten-free), their GI doc sent my youngest for additional bloodwork as this was the first time he saw him and we had opted out of the endoscopy for him. Anyway, he tagged on checks to test for casein, wheat and egg allergy because they're more common in those with celiac. (I do realize many suffer food intolerances but as we all know that's not the same as an allergy.)

Hope he gets better soon! Maybe once he's off gluten entirely, after awhile you'll see improvements with his ADHD.

nmlove Contributor
nmlove
Posted

Oh bread... We just made Karina's sorghum millet bread over the weekend. Yum! Check out her stuff at glutenfreegodess.org. She's free-of lots of stuff.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Look for a fruit market with a fresh meats counter. Nearly everything in there will be safe and you will be surprised at how little it costs.

Make a menu and shopping list the day before you go shopping. You'll save yourself a lot of money and frustration. The beginnings of my menu look something like this....

meats, starch, veg, fruit

chicken, potato, peas, apples

roast, squash, green beans, bananas

pork chops, rice, broc, oranges

hamburger, gluten-free pasta, tomato, peaches

Anyhow you get the idea....... hope this helps RA

sandsurfgirl Collaborator
sandsurfgirl
Posted

I would find another doctor personally. He shows signs of celiac disease even though he is gluten light. That is serious. His celiac must be pretty bad if he's showing signs of it on a diet that is so low in gluten. She's gambling with your child's life and well being to satisfy her scientific curiosity or she doesn't know what she's doing. Either way, your child is in danger if he is getting hives and allergic responses. What does she propose you do if he goes into anaphylactic shock and quits breathing?

You have your diagnosis based on the biopsy and his dietary response.

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gibsongirl Newbie
gibsongirl
Posted
  • Author

Thank you for all the information and responses. Our gut feeling has been celiac for awhile now and we are going gluten free. So far this week just a few minor bumps in the road, but I know we will get there. I really like the idea of eating minimally processed foods and whole foods to begin with, most of our diet is organic and relatively healthy. So far my son has not asked actually liked any of the gluten free breads, cookies, cereals or snack bars, but he and his sister both did really like the almost kind of rice crispy bars and the gluten free pancakes so at least that is something to add some calories to both their diets. I think we will just wait a couple of weeks on those kinds of foods until he asks for them again. We are working really hard on getting more nutrition and calories in him via just healthy,simple foods, putting him back on all the wheat for all this testing in December and January really did him in. Thank you all again for your help and advice.

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