Could She Still Be Celiac?

[sdw6705]

My 2 1/2 year old daughter is 21.5 pounds and has been tested for everything over the past year. She has had two upper endoscopies and one colonoscopy all with biopsies taken. All of the biopsy results have been labeled as 'nothing remarkable'. We have had blood tests for Celiac too, though the only result from that is that she is IgA deficient, which means that none of the regular markers can be trusted. I don't think that we have had any genetic tests for Celiac done.

The GI doc said that she is fairly confident that she has ruled everything out that could causing failure to thrive (GI related). Endocrinology has also not found anything abnormal. I would like to think that my daughter is just little, but I am bothered by the fact that her ESR (sed rate) is ALWAYS elevated. I think that 13 is the upper limit of the normal range, and my daughter's is always around 30. She has a bloated belly, brown spots on her front teeth, sometimes mushy stools, and little raised bumps on her forearms and above her knees. The growth issues seemed to start with the introduction of solid foods around 8 months. This all seems consistent with Celiac, but we have no positive tests to prove it. I have kicked around the idea of trying the gluten-free diet, but am hesitant because I'm so unfamiliar with it. I am faced with the daily task of trying to cram as many calories into her as possible, and eliminating gluten seems like it would make that task exceedingly difficult - especially since pasta, breads, and breaded 'stuff' are her favorite foods. So I'm not sure it is worth it - especially since we have not just one, but two, negative biopsies. And I'm afraid that the lack of calories will just sink us further into the hole.

Has anyone had any experience with anything like this?? What would you do?

[Luisa2552]

I don't have quite the experiece you have but I have been lurking around these boards a while. From what I understand it can be really hard to diagnose young children. A lot of people here have used Enterolab- that's one idea for you. But to me it seems you should try going gluten-free. It was a rather scary task when I first started but I now find it's rather easy (except for eating out, which is still a bit tricky for me). Both my girls had negative blood tests but my youngest has so many symptoms I have had her gluten-free fo about a week. She is a carb-a-holic. Has to have her pasta and bagels. There are SO many great gluten-free products out there! I realize I live in a part of the country where even my local Safeway has a fair amount of gluten-free stuff but I get most of my stuff at little local markets and Whole Foods. If you have a hard time locally, order on line.

A few products I love are Pamelas Pancake mix and the Bread mix (makes great bagels!) Tinkyada pastas are the best. I have just found out Annies Homegrown pastas make a gluten-free Mac and cheese my daughter loves! Glutino pretzels are better than any wheat pretzels I have ever had. Envirokidz makes cereals and snack bars kids love. The Gorilla munch are like Kix cereal and would be a great snack for a little one. Ener-G has great gluten-free breadcrumbs.

This is just a start. I'm sure more will chime in. It really is easy with some research. Even without all this packaged stuff you can do it with just basic whole foods- meats, fruits, brown rice, etc. but I do enjoy the convinience of the packaged foods!

Do a bit of reading too. Living gluten-free for Dummies has been my favorite and these boards have been great too. The proof will be in how your daughter responds to the diet and my guess is that she will do loads better. Good luck.

[Darn210]

I don't think you'll go farther in the hole, calorie-wise, by trying the gluten-free diet. There is quite a wide variety of food available. IMO, with the exception of sandwich bread, just about everything has a pretty good substitute available. And as far as the bread goes, some are definitely better than others. We use tinkyada pasta, bell&evans chicken nuggets, & homemade muffins. My daughter prefers to just use rice cakes instead of bread for her peanut butter. Besides that, her actual day to day diet didn't change all that much.

I think the homemade stuff tastes better (and is cheaper) . . . cookies, muffins, bread, cupcakes, etc and it freezes well. So I cook up a batch, have some immediately and freeze some for later (quick) use. I have even made homemade corn dogs and the kids loved them (they froze well, too). I tried to make a batch of chicken nuggets and the kids ate so many of them during the meal (way more than normal), there were only three left and not worth freezing .

There will be some items that you bring home or make that will get the big thumbs down but don't get frustrated. Good Luck.

And as far as having any experience with this . . . Currently, only my daughter is gluten -free. We are going to put my son on the diet after an appointment with the GI in two weeks. We are not sure if the GI is going to tell us to do it or to have him retested on a regular basis, but we are planning on giving it a try to see if it will help his growth. It certainly doesn't hurt to try.

[evansmommie]

Hello,

We went through pretty much the same thing with our son that you are describing! I'll try to give you the short version of our story. I was diagnosed with Celiac two years ago, when my son was a little over a year old. He had always been small, but the ped thought he was just going to be a small person. After my diagnosis however, the ped decided to test for the genetic marker for Celiac. It came back positive, so we went to a ped. GI. She did the celiac serology panel, but it came back negative. Because of the family history, she decided to do a scope anyway. That test came back inconclusive (he did have eosinophilic esophagitis though). She decided to wait a bit and see how he'd do without any diet change. He didn't gain any weight for a year, but did get about an inch taller. So, this past spring, she did another scope. That test had the same results as the first one. She then ordered a small bowel follow-thru. After a lengthy discussion, she and the radiologist who read the SBFT results agreed that it looked like he had Celiac damage in his jejunum. I guess it can show up there, as well as in the duodenum. He has been gluten-free since March and is doing great. He has a lot more energy than he ever has and is growing well. After a year of no weight gain, he put on a pound in 4 months!

As far as calories go, I don't think going gluten-free will hurt anything. There are a ton of gluten-free options out there to replace gluten-based bread, pasta, etc. The Kinnickinnick donuts are my son's absolute favorite thing. They also make really good bread. Also, have you tried adding Carnation Instant Breakfast to your daughter's milk? Our ped GI recommends that to help her patients gain weight. And it's gluten-free! Bell and Evan's makes good gluten-free chicken nuggets and Ians makes fish sticks. My son is a picky eater and he's taken to these things without missing a beat.

Good Luck!

[elye]

Don't forget, too, that there are MANY individuals who get false negatives on the blood panel, and also on the biopsy. As the very wise veterans on this forum will state, the only true, accurate diagnostic "test" for celiac is positive dietary response. So I agree with the others so far--trying the gluten-free diet is the way to go, and you can replace all the kiddie carb-favorite foods with gluten-free stuff. It's all available now, in specialty shops or on-line. Just brace yourself for the new grocery bills!

[taweavmo3]

You have nothing to lose at this point to go ahead with the diet. There are alot of calorie rich foods you can give to your daughter in order to get her to gain weight.....but I would venture to guess that once you try the diet with her, she will start gaining. My 12 month old is gluten/dairy free like my other kids, so I have to add a few extra calories to her diet. I use coconut oil to cook and bake with, pile on olive oil any chance I get, and make smoothies with coconut milk..and she also eats at least one or two avacados a day.

My eight year old son had a negative test, but has responded very well to the diet. He may have just had a gluten sensitivity, rather than full blown Celiac...either way, the treatment is the same and he is now thriving. I would give the diet a chance with your daughter...and keep in mind too, that all dairy may have to also be eliminated in order to see the best results. Check out some Dana Korn books to get you started, that's what I did. Then I came here for the rest of my questions, and within six months time it was second nature. It isn't a convenient diet, but you do get used to it after a while!!!!

Good luck to you, keep us updated on how you and your daugther are doing!