Hi everybody,
I think that I may have Celiacs Disease and the DH rash. I was hoping that since lots of you have experience with Celiacs Disease/ Gluten Intolerance, you might be able to help me out. My doctor does not seem to believe that a gluten intolerance is anything more than a fad. I have been so frustrated and really appreciate any advice/help you have!!
Here are my gluten-related symptoms:
- Severe stomach problems for the past 13 years. These lasted until I decided to try giving up gluten last year. They are now MUCH better, although still not 100%.
- Depression/Anxiety/Fatigue - also (amazingly) relieved after giving up gluten.
- Chronic, itchy rash - began after giving up gluten
Gluten-Related History:
Since giving up gluten one year ago, I have developed a chronic, itchy rash. The rash usually begins on my legs, and spreads over my whole body. It is worst on my legs, the sides of my hips, and my arms. It sometimes spreads to my hands, neck, back and face. It looks like the pictures that I have seen on the DH forum here. It is extremely itchy and doesn't seem to be caused by anything in particular (I have been keeping a food diary). I am a bit confused about why it started AFTER giving up gluten.
About 10 years ago, I had a test taken to check for Celiacs disease, which came back negative (I had a colonoscopy - a procedure I hope I'll never have to suffer through again!!). My gastroenterologist at the time diagnosed me with IBS and prescribed many types of pills, etc. - none of which worked. He also suggested that I eat only white bread, pasta and rice for a while, and then re-introduce other foods back into my diet to see what was causing my problems. (Obviously eating the bread, pasta, etc. did not relieve my symptoms).
Since giving up gluten drastically relieved my symptoms, I assumed that I was gluten-intolerant. Now I am considering the possibility that i might have Celiacs. I am careful about what I eat, but I still sometimes eat food that "may contain traces of gluten," etc., but perhaps I should start being more careful...?
Questions I'm hoping you can help me with:
- Is it possible my Celiacs test was not accurate, and do you think I should be tested again? (I understand a lot of the tests out there are inaccurate and many doctors don't know enough about Celiacs/Gluten Intolerance)
- Do you think that my rash is DH, and why did I only get it after giving up gluten?
- How much gluten do I have to reintroduce into my diet in order to be accurately tested (and is it worth it??)
- Do topical sources of gluten make a big difference? I haven't been checking for them...
Thank you so much, and I truly appreciate ANY help you can give me!!
Julie