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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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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
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