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chasing4

By chasing4
in Meet Up Room

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chasing4 Rookie
chasing4
Posted

At the end of last year one of my daughters, Skye was throwing up a lot. Our family doctor put her on Prevacid and it helped for a little bit and then she would get really sick again. It would go back and forth for a while until me and my husband decided something needed to be done. We called our doctor back and he wanted us to take her to see a GI. We did a couple months ago.

He did some blood work and found some levels elevated in her bloodwork. He did an upper GI and colonoscopy to check everything out. He found inflammation in her small intestine and did a biopsy. On Monday, the office called and the biopsy came back negative for Celiac's so he's saying it might be Gluten sensitivity.

He wants us to put her on a low-gluten diet, but I feel guilty giving her anything with gluten that I'm trying my best to cut it out. I'm not sure if I'm doing the right thing though.

I'm glad I found this site. I'm sure I'll have a lot of questions.

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RiceGuy Collaborator
RiceGuy
Posted

Welcome to the board!

First, I think you're doing the right thing by wanting to eliminate all gluten. If your daughter has a sensitivity, it doesn't make sense to have any in the diet at all. Also, keep in mind that all the tests doctors rely on are not nearly as accurate as the diet can be in determining if gluten is a problem. If she improves on a gluten-free diet, that's pretty conclusive.

I hope your daughter gets well soon!

missy'smom Collaborator
missy'smom
Posted

You might want to get more info. about that biopsy. They should have taken quite a few samples(like 9-12). Some Dr.s don't take enough. I know a family that had son biopsied and dr. came back and said "no celiac disease, only one of the samples showed villi damage". Well mom knew better, that that meant that he did have celiac disease. The results were clearly positive for celiac disease. It was the interpretation that was wrong.

MDRB Explorer
MDRB
Posted

If your daughter does have celiac disease and goes completely gluten free, she would have a significant improvement in her symptoms. However, a lot of the tests that are done to check for celiac disease become inaccurate if you are not eating gluten.

I'm thinking that her doctor probably wants to check if there is any improvement in symptoms on a gluten light diet before doing further tests.

I went gluten free before having any tests done. I then had to get back on to the gluten for one month to get a diagnosis and it was very very difficult, it made me extremely sick, much sicker than I had ever been before. I would not recommend to anyone, going back onto gluten if you have been off gluten for any amount of time.

So, if you and your daughter are not concerned about getting a formal diagnosis then I would suggest going completely gluten free as soon as possible. If you do want to get a formal diagnosis in the near future then going completely gluten free will make it much harder when she has to go back to eating gluten to get a diagnosis.

Its a really big decision, good luck making it!

Ivanna44 Apprentice
Ivanna44
Posted
At the end of last year one of my daughters, Skye was throwing up a lot. Our family doctor put her on Prevacid and it helped for a little bit and then she would get really sick again. It would go back and forth for a while until me and my husband decided something needed to be done. We called our doctor back and he wanted us to take her to see a GI. We did a couple months ago.

He did some blood work and found some levels elevated in her bloodwork. He did an upper GI and colonoscopy to check everything out. He found inflammation in her small intestine and did a biopsy. On Monday, the office called and the biopsy came back negative for Celiac's so he's saying it might be Gluten sensitivity.

He wants us to put her on a low-gluten diet, but I feel guilty giving her anything with gluten that I'm trying my best to cut it out. I'm not sure if I'm doing the right thing though.

I'm glad I found this site. I'm sure I'll have a lot of questions.

Hi chasing4,

Hugs and welcome to the boards. You are in the right place for support, encouragement and venting :o when needed.

It is very frustrating when you know something is wrong, and you can't get a diagnoses for it. Bottom line, if going gluten-free has helped your daughter, then stick with it. :) In today's world of "elimination diets" etc; and allergist doctors suggesting the process of elimination to find the trigger/s, your daughter will not be too alone. From researching around, I've read a lot how Celiac and gluten intolerance/sensitivity goes under diagnosed a lot, as doc's look at one sympton in isolation and rarely on the 'whole" big picture angle. Follow your gut! so to speak. If it helps your daughter, then continue to be gluten-free .

In terms of the low gluten, there is so many hidden sources of gluten that it takes on average (my own opinion) 6 months to be totally gluten-free . So you are still problably giving her some gluten, in some hidden form. This site has some good links for what's safe and not safe, what to look for.

Don't get too overwhelmed with the gluten-free search though, no one can learn it all in one day (alias we try :rolleyes: ) Going gluten-free is expensive! Learn short cuts; such as dollar stores and the public library. There's a ton of books there for loan, that will help you "sort" it all out.

Continue to read the forums here, and read Labels and re-read labels. Email manufactuers to get the " gluten-free " product lists. If you are not sure, then don't let her eat it.

It does get easier and there's a ton of yummy food that is gluten-free naturally, also from what I hear gluten-free companies are getting more popular and fine tuning their mixes, where you can't tell the difference :P

Start at your library, as well as the forum here, and do it One Ta Da at a time.

hugs

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