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Can A Little Be Okay?...

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We started my 13 yr old on a gluten free diet back at the end of December when my husband started. She was having lots of headaches, migraines and has had joint pain for two years (and some central nervous system wacky things that occur..shock sensations in her arms when running around). Only test she was positive during testing from the rheumotolotist was the ANA test....and then in the fall her white cell count was low. I never considered or even knew that gluten could possibly be the cause of her problems. Nor did her dr. mention that maybe she would benefit from this. It wasn't until I was researching for my husband that I learned she had signs of gluten problems as well. Husband's mother is lactose intolerant and says "I can't handle anything whole wheat but I'm fine with white flour."..so I'm not sure what to think of that. Anyway, my dd was going gluten free for weeks and started noticing her joint pain going away and then her stiffness disappearing too. Then she'd cheat and get a headache...and when she cheats bad she says she feels awful. Like this weekend...she had a lot of gluten foods and by monday she was feeling miserable and had a bad headache. Then looking at something with gluten and eating it because it was so tempting. So I told her that maybe she should just go back on gluten for a couple weeks straight and see how she feels because I'm tired of trying so hard to make gluten free foods accessible to her and then she turns around and eats nongluten foods. The next day I asked her to eat lunch at school and she said "no mom, I don't want to feel horrible...please make it gluten free."...so I did. However, then later in the day she has glutened cookies.

So my question is. If someone is just gluten intolerant is it ok to have a little gluten here and there...like a cookie or a little flour that might be in something else. What is the likelyhood that she's actually celiac? I'm not sure what I should do next...if I should call the dr. and tell her what we've been noticing and ask if we should get her tested for celiac or just continue a full gluten free trial..and make her stick to it completely...followed by a gluten challenge. She says her joint pains are back but not horrible..and so is her stiffness. However, she's been cheating a lot in the last week to two weeks. Ugh..what to do?

Carecare

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Celiac.com Sponsor (A8):

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If your daughter IS celiac, read this carefully. Quote is from Dr. Peter Green's book on Celiac Disease.:

"Researchers have shown that ingesting 100 milligrams of gluten a day will cause continued damage to the villi of the intestine. While the exact amount of gluten that can be ingested daily without causing intestinal damage has not been scientifically proven, a recent study from Finland calculates it to be about 30 milligrams. Put differently, this is a substantially LESS than a TEASPOON of birthday cake!"

If your daughter is NOT celiac, the fact remains that she is getting joint pain. This is not merely an uncomfortable inconvenience. Joint pain comes from inflammation in the joints. That inflammation seems to be caused by eatiing gluten according to your comments. Eating gluten gives joint pain, removing gluten makes it go away. Join pain is caused by DAMAGE being caused by the inflammation. Such a thing occurring in a young person should never be ignored or treated lightly. There is a very real possibility that if she eats gluten throughout her life, celiac or not celiac, she is causing continued joint damage and this condition will not get better, it will get worse. She could have a very real possibility of being quite crippled by arthritis in her later years .....later years meaning in her 40's, 50's, thereabouts.

Now is the time to stop the inflammation. Not eating gluten is really a very small price to pay for preventing the onset of continued arthritis.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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I believe that gluten intolerance is a spectrum. You start out intolerant and do more and more damage until you finally reach full-blown celiac. You will spare your daughter from a lifetime of health problems with you commit to going gluten-free now. You don't want her to get to the celiac stage - by that time she'll be very very sick and that can't be good for a growing body.

Since she's mostly gluten-free, it's going to be hard to get a positive result from a blood test or scope. I personally don't think it's worth it to keep eating gluten just for a positive test, especially since she obviously feels rotten when eating gluten. I think you need to fully commit to the diet. It seems like she's softof kindof almost gluten-free but if she has a bit of gluten, well, no big deal, yada yada. You have to make the full commitment to going gluten-free. If your daughter needs a positive medical test to commit to this, I'd recommend enterolab. They can test for gluten intolerance for a year after going gluten-free, plus they can detect intolerance long before blood tests can.

Sounds like your daughter's biggest temptation is sweets. Why not get a cookbook and the two of you can start trying to make gluten-free sweets together. Try "The Gluten Free Gourmet" cookbook - I have never made a bad cake from that book.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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When I was a new celiac, my Dr. didn't warn me about the serious consequences of continuing to eat gluten. In fact he jokingly told me about a patient he had who would eat gluten in order to lose weight every now and then. (I have never had weight loss issues, but weight gain, btw) I mistakingly thought a little wouldn't hurt me. Then I started researching online and found out all the serious complications from untreated celiac.

In my opinion, eating a little gluten is a slippery slope. A little turns into a little bit more, and a little bit more, until your eating it practically all the time. Even if your daughter isn't a full on celiac, I agree with what the others have said so far. It's just better off staying away from it completely!

There is so much available on the internet nowadays as far as support and recipes. The one thing I miss the most is cakes, cookies, etc. If I have a craving for say Pecan Pie, I just do a little digging and usually I wind up with an awesome gluten-free recipe. AND...Bette Hagman has some really awesome cookbooks out there, including I believe one for just desserts.

Good luck!


Jennifer

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Well, I'm sorry your daughter is having a hard time sticking to the diet. Would sending treats to school with her help keep her from cheating? If she had her own gluten-free cookies, maybe she wouldn't eat the gluten ones.

I feel that gluten intolerance can be just as damaging as celiac disease. It has probably caused a couple of autoimmune diseases in me and other problems like severe IBS. You have the antibodies to gluten in your intestinal tract for several years after exposure to gluten when you're entirely gluten free. That indicates an ongoing long term autoimmune response and it isn't good for you. (According to Dr. Fine's research).

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I just want to play Devil's Advocate here for a minute:

Are you 100% certain that gluten is her problem to begin with? Could she be reacting to synthetic additives or something else that was removed in the gluten-free trial, rather than the gluten itself?

If she does indeed react to gluten, then she needs to completely avoid it. Even a trace can cause problems.


Ruth, single mom to DD1, 14, DD2, 113, and DS, 7

Kosher, low carb (since 6/3/07), gluten free (since 11/15/07), dairy free, mostly legume (incl. soy) free since 2/7/08. Now on the Blood Type Diet (type O) which includes cutting out corn as well. I have fibromyalgia and this diet is helping me feel better.

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In order to do an effective gluten challenge, you'll need to go 100% gluten free. Gluten "lite", cheating, etc. negates the benefits of gluten free.

If she is going to be tested, she needs to be eating gluten for an extended period of time.

It might be harder to go gluten free, then re-introduce gluten and eat gluten long enough for the tests to be accurate (particularly if she sees dramatic improvement on the diet).

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