"Clearly" Celiac

[Chanda86]

Hi everyone! I have to be "that person" and ask for your non-medical-professional advice.....

I've had a rash for almost 2 years--my PCP as well as my Dermatologist have tried to figure out what it was for quite some time and had trouble doing so.

One particularly bad night, I started googling rashes (as I did almost monthly) and I stumbled upon Gluten Allergy-- Dermatitis Herpetiformis. Every thing matched to a T.

I called my doctor on the Monday and asked her to order a full Celiac Panel. She did.

The results are attached to this post.

She called me and said "You are clearly Celiac" and referred me to a NEW dermatologist that is "educated" in dealing with celiac disease and DH. I went and saw the Derma 2 days later, she said "No need to biopsy.....you are clearly Celiac". There is that "Clearly Celiac" comment again.

  

So..... this is my question. We have decent but not good insurance. I'm paying a LOT of money to see these doctors, run these tests, etc. If I am so CLEARLY Celiac.... why do I need to see a GI or have an endoscopy? I'm already looking at $600 in bills and the GI and Endo would put me closer to pay 2K out of pocket.

  

Can I go gluten free? See if my DH improves? Is the GI NECESSARY? Has anyone NOT gone to the GI and just went gluten-free?

[Chanda86]

My attachment didn't post..... I don't know why.

[Chanda86]

Now I see it, lol. Sorry! New to this!

[TheLightSeeker]

Hi Chanda.
No worries.
Just copy and paste, if you want to simplify things.
At any rate, you really don't have to see the Gastro and do a bunch of tests.
There's no better test than a total gluten & wheat elimination, anyway.
Make sure you educate yourself, because gluten is in so many products like shampoo, cosmetics, sauces, playdough,
envelopes and many food products which do not list gluten as an ingredient!
Do a search for Living Gluten-Free For Dummies, for a more complete list and details.
If your suspected DH does not resolve with this elimination, you may have to get it treated with Dapsone, the first line of treatment for this condition.
A couple things to note:
Some gluten effects may linger around, many weeks after you start the elimination diet.
So don't assume anything, till you you are wheat/gluten free for a few months.
Also there's the possibility If you are you are gluten-intolerant, you may also be sensitive to dairy (50% of people sensitive to gluten are sensitive to dairy as well)
or other foods.
This is called cross-reactivity.
Best wishes,
Niko

[zoe114]

Hi, I wish I had realized the connection to the rash as you have. I too had that rash, I was trying to lose weight and was eating a ton of high fiber wheat and then the rash came about. About a year or so later my thyroid started to have issues. I am mentioning this to you because I went gluten free and never went back to eating it except for mistakes- such as eating out and not knowing what was in the food. One note, don't eat chips out in town that have been fried- often they use the same oil they fry breaded foods in.  I agree with Thelightseeker, you don't need more test. Your lucky in that your doctor and you know your issue, many like me feel better after getting off gluten and we don't go get tested.    I got off all grains last month to see if it would help me- it did. My suggestion from doing and reading, it seems that gluten free oats can cause issue for some of us. I love oats, but staying away from them now. The great news is your going to start feeling better very soon. I was lucky in I felt better in 2 weeks.