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All The Biopsies Were Negative ....still Going Gluten Free


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#1 carecare

 
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Posted 22 December 2011 - 07:37 PM

I guess I knew we'd still do the gluten free house no matter what. I know each of us feels better gluten free so we'll just move on. My 12 yr old's esophagus was slightly irritated...but I don't think the nurse mentioned the dr wanting to do anything for that. My 10 yr old looked clear but because he has so many stomach complaints the dr prescribed an antacid. My 19 yr old daughter had pretty extensive Eosinophilic esophagitis. So the biopsy confirmed what the irritation the dr saw was. She also has a hiatal hernia which I'm sure doesn't help that either. The EE makes us realize what she has had problems with over the past 7-8 yrs with reactions to things. Her chest used to hurt so extremely bad I'd almost be bringing her to the ER.

So the plan with her is to eat gluten free while home on Winter break from her college. Get her healthy and then hope that she can make some good choices with her food when she goes back. I think I will call up the college and have her meet with the nutrionist there...as I think they did have someone available. She's been very fatigued so my worry is she'll get herself feeling good again and because she doesn't have that celiac diagnosis the college won't do anything to help her with her eating plan.

Ah..I know nobody wants the diagnosis of celiac...but it would explain so much. My 12 yr old son's blood work was positive and his muscle pain went away gluten free so something must be going on. My husband has to avoid gluten or he gets severely ill.

The dr recommended genetic testing now. Is there any difference between getting the genetic blood test vs the swab of the mouth. I think our insurance pays 50% for a genetic blood test which would put us having to pay about $550...vs doing it on our own I think it was $300 for the saliva test through promitheus labs.
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#2 frieze

 
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Posted 23 December 2011 - 08:33 AM

what are you hoping to learn? what would change in your approach? may well be a waste of money.
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#3 researchmomma

 
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Posted 27 December 2011 - 01:51 PM

I guess I knew we'd still do the gluten free house no matter what. I know each of us feels better gluten free so we'll just move on. My 12 yr old's esophagus was slightly irritated...but I don't think the nurse mentioned the dr wanting to do anything for that. My 10 yr old looked clear but because he has so many stomach complaints the dr prescribed an antacid. My 19 yr old daughter had pretty extensive Eosinophilic esophagitis. So the biopsy confirmed what the irritation the dr saw was. She also has a hiatal hernia which I'm sure doesn't help that either. The EE makes us realize what she has had problems with over the past 7-8 yrs with reactions to things. Her chest used to hurt so extremely bad I'd almost be bringing her to the ER.

So the plan with her is to eat gluten free while home on Winter break from her college. Get her healthy and then hope that she can make some good choices with her food when she goes back. I think I will call up the college and have her meet with the nutrionist there...as I think they did have someone available. She's been very fatigued so my worry is she'll get herself feeling good again and because she doesn't have that celiac diagnosis the college won't do anything to help her with her eating plan.

Ah..I know nobody wants the diagnosis of celiac...but it would explain so much. My 12 yr old son's blood work was positive and his muscle pain went away gluten free so something must be going on. My husband has to avoid gluten or he gets severely ill.

The dr recommended genetic testing now. Is there any difference between getting the genetic blood test vs the swab of the mouth. I think our insurance pays 50% for a genetic blood test which would put us having to pay about $550...vs doing it on our own I think it was $300 for the saliva test through promitheus labs.

Your daughter is old enough to make good choices, however, the school cafeteria may be willing to help her with what is or is not gluten free. She can't be the only person there eating gluten-free. Check that out.

I am sorry that you don't have the answers that you seek, however, I would just go gluten-free and see how everyone does. It is worth it since it is not a prescription and easy to reverse if you don't see improvement. I know how you feel though. I am right there with you.
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#4 eatmeat4good

 
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Posted 27 December 2011 - 06:43 PM

YOur daughter should be very careful about eating in the cafeteria at all even if they have gluten free choices. The fact that they use flour in the kitchen means gluten flies all over the place. You might see if she can get accomodations to be able to cook her own food. But there are some nightmare posts on here about people trying to get colleges to accomodate gluten free students. It is frightening. I hope the nutritionist is helpful though. And some people care enough to help and learn so hopefully that will be the case for her. Just remind her to watch her reactions and suspect contamination. One kid in college posted his only option was the cafeteria and he kept getting contaminated but couldn't do anything about it because the food itself was basically gluten free so the cooks and the staff were unsupportive. I hope things change drastically soon.

I don't know anything about the testing as we opted against it and just went gluten free and have never been more healthy.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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