Need A Little Guidance

[DinaB]

So, I haven't posted here in a while because I've been trying to get my life back on track battling so many food allergies and intolerances. However, I do have a question and I am very confused. Most recently on a business trip I was glutened. I knew it instantly. Although I didn't get the gastro symptoms that I normally would get, I got a few new ones...blisters around my lips and a horrible itchy rash on my elbows that lasted for a week. The itching was so bad I didn't know what to do. While I am only gluten intolerant, is it possible to get DH without being Celiac?

Very confused.

[mushroom]

So, I haven't posted here in a while because I've been trying to get my life back on track battling so many food allergies and intolerances. However, I do have a question and I am very confused. Most recently on a business trip I was glutened. I knew it instantly. Although I didn't get the gastro symptoms that I normally would get, I got a few new ones...blisters around my lips and a horrible itchy rash on my elbows that lasted for a week. The itching was so bad I didn't know what to do. While I am only gluten intolerant, is it possible to get DH without being Celiac?

Very confused.

Hi DinaB:

There has recently been a thread running here on the difference between gluten intolerance and celiac which you may well find interesting. A quick google should bring it up.

From what I have read here, if you do ln fact have DH then you have a positive celiac diagnosis. It is quite possible that your original testing, whether blood or biopsy, or both, was a false negative; many are. If it is really important to you I would suggest retesting. Also, if you have a biopsy taken immediately adjacent to the itchy lesion, DH can be diagnosed and therefore celiac. However, the biopsy must be taken while the lesion is active and so often it is hard to get an immediate appointment. A lot of doctors don't understand this.

Good luck with whatever you decide to do. While your itching sounds like DH it could also be eczema but this could also follow from a celiac diagnosis.

[DinaB]

Hi DinaB:

There has recently been a thread running here on the difference between gluten intolerance and celiac which you may well find interesting. A quick google should bring it up.

From what I have read here, if you do ln fact have DH then you have a positive celiac diagnosis. It is quite possible that your original testing, whether blood or biopsy, or both, was a false negative; many are. If it is really important to you I would suggest retesting. Also, if you have a biopsy taken immediately adjacent to the itchy lesion, DH can be diagnosed and therefore celiac. However, the biopsy must be taken while the lesion is active and so often it is hard to get an immediate appointment. A lot of doctors don't understand this.

Good luck with whatever you decide to do. While your itching sounds like DH it could also be eczema but this could also follow from a celiac diagnosis.

Thank you so much for your quick response. I've had to blood tests, two endoscopies, and a gene test. The gene test was taken at a celiac center in NJ and was told that if that came back negative I would NEVER have Celiacs. I read so much conflicting information, though. I don't understand if I something that contains Wheat/Gluten I get blisters above my top lip, itchy on inside of thighs, arms and now new rash/blisters on elbows. I even had to change all of my lipsticks. This just doesn't make sense.

[RiceGuy]

I just read that some additional genes have recently been associated with Celiac, so it may be that you might still be able to become Celiac even while not having the genes you were tested for.