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This Diagnosis Can Be Complicated!

LMM

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LMM Rookie
LMM
Posted

My daughter has been seeing a GI for 3 months. Her celiac panel came back positive, her biopsy was negative. We had to wait 3 weeks to see the doc so I thought maybe we can try gluten free eating. She improved a bit during the 10 days and then the nurse became upset I was trying the diet before the visit so we stopped. She thought she had IBS. We did meet with the doctor, very knowledgable I believe, and he said she probably has celiac so they ran bloodwork for the gene he feels will be there. What do you expereinced people think? I was really thinking there was no way since the biopsy was negative and she only saw minor improvements in 10 days. It has been a week and we wait to hear her latest! Meanwhile she is feeling poorly still-back on gluten until final diagnosis. Yikes! How likely is this for her? How long until she sees improvements in stomach pain and bloating when going gluten free? Thanks so much-as you know from expereince, there are so many questions.

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Lisa Mentor
Lisa
Posted

Since she has had the Celiac Panel and a biopsy, there is no reason not to begin the diet. The gene testing does not require a gluten free diet. Never the less, if your daughter had a positive blood test, she does have Celiac. Biopsies do not always reflect effected areas and can be false negative.

It took me about three to six months before I truly mastered the gluten free diet. It can be difficult to catch all the traps in just a few days. Your best resource is this place.

Wolicki Enthusiast
Wolicki
Posted

Exactly what she said up there, LOL. Blood tests are rarely wrong. Biopsies are frequently wrong. There are over 35 feet of intestine and it's easy to miss a spot. Be strict on the diet. Keep a food diary to be sure she does not have secondary food intolerances and good luck.

gary'sgirl Explorer
gary'sgirl
Posted

My kids took at least a month to show noticeable improvement (granted they are a little too young to really describe pain or lack there of - the oldest is 4 yrs). I have been on the diet for almost seven months now and I have seen very little improvement, so don't give up on the diet. It may just take more time, but your daughter should see improvement after a while.

I wish there was a specific time line, but there isn't... hang in there!

LMM Rookie
LMM
Posted
  • Author

Thank you to all who offered advice. We shall wait and see what the test says. Meanwhile we are learning about the Gluten Free diet. This web site is wonderful!

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      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
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