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Celiac.com Celiac Disease & Gluten-Free Diet Forum: Still Frustrated - Celiac.com Celiac Disease & Gluten-Free Diet Forum

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Still Frustrated Rate Topic: -----

#1 User is offline   stickymommy 

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Posted 10 November 2009 - 11:34 AM

I just need to vent. I was exceptionally hopeful when the gastro after many many dr visits to many other kinds of drs finally seemed to know what is wrong with me. But neg blood and now neg biopsy. I started gluten-free about a week and 1/2 ago. and i do feel somewhat better. especially mentally, the bucket on my head like immediately disappeared. as well as the general sick feeling i have all the time. the strange blistery rash on my arms and legs and back is back. the birage of other symptoms of course are still there. don't get me wrong i really don't want a disease but i would love to label this craziness something. tired of fibromyalgia or depression or thyroid. could it still all be gluten related? should i seek a second opinion? The dr only took 3 samples. should i do that testing through entero lab? I wish i knew more, i could really use some advice from someone who understands all of this more.
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#2 User is offline   Roda 

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Posted 10 November 2009 - 11:59 AM

Sure it still could be from gluten. Have you had the rash biopsied? Maybe it is DH. I think (but don't know for certain) that people with DH can have negative blood work and small bowel biopsy, but still celiac because of the DH. You could be gluten intolerent also.
Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 7):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 11):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
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