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More Confusion And Frustration

jeannine

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jeannine Apprentice
jeannine
Posted

I have been seeing a dermatologist for a rash that I believe to be DH. The doc doesn't know what it is. The rash has been around for over a year and I've been seeing the derm for 8 months. He finally added my history to my rash and sent me to a gastroenterologist. I talked to a MD, resident and PA while there. They looked at my history but not so much at the rash and decided to do a liver biopsy (my AMA is off the charts) and a biopsy for celiac.

The MD said there is no way that I could have celiac because I'm not a "classic" case. The resident just said that I was interesting. The PA said that she is sure I have celiac and the biopsy will be definitve.

Ok, my problems are- fear that the biopsy will be normal (which sounds strange, but unless I get something that actually helps the rash I am going to go completely insane). And the PA told me to eat lots of gluten before the biopsy. Well, I'm as sick as a dog- I hadn't completely given up gluten, but now I'm eating a ton and have lost 12 lbs in less than a week and I don't spend a lot of time outside of the bathroom or bed. I'm 80 lbs- I guess 68 lbs now!- overweight, so part of that doesn't bother me so much.

What happens if the biopsy comes back negative? I've read a lot of stories here of biopsies being negative because they hit a "healthy" spot. Does everything just end there? Or do I go back and start everything all over?

There is a family history with celiac and other autoimmune disorders.

Thanks!

Jeannine

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kitten37 Newbie
kitten37
Posted

I share your frustration and I totally understanding you wanting the results to say SOMETHING. I've gone through my life in constant discomfort and with a wide array of "strange" medical ailments all of which have no conclusion. Ever test comes back fine to the point where you start to think you might actually be losing your mind or possibly manifesting things. I even asked my doc that one and he said no way. So if your not crazy then there must be something. I'm not totally convinced in the western medical practices because I just figure I know that the majority of peolpe do not go through life in pain like this. So just keep pushing til you get your answers.

ravenwoodglass Mentor
ravenwoodglass
Posted

What happens if the biopsy shows up negative is that you go gluten free anyway. The skin rash will take a while to resolve totally and even small amounts of gluten, even in your toiletries will keep it active. It should however improve quite a bit as soon as you stop reinjesting gluten. The truest test of whether you will benefit from the diet is doing it strictly after you are done with all the testing you want to go through. That is really the best way to make a final determination.

cupid Newbie
cupid
Posted

Hi, My biopsy came back negative and your right if they don't get an infected section then its inconclusive. If celiac runs in your family you may want to get the DQ2 & DQ8 DNA testing to see if you carry the gene. I get my DNA results tomorrow and probably sad to say but really hope its positive so I can finally have some answers. Started gluten-free day after testing and feeling somewhat better but its only been a little over a wk so looking forward big improvements. Good luck!

jeannine Apprentice
jeannine
Posted
  • Author

Well, another day another 2 pounds! :blink:

After the biopsy, I am going to go gluten-free- really gluten-free (not the half-baked job I was doing). This is just crazy, losing so much weight so quickly, feeling like crud, and the rash is everywhere but my face now!

I am now sick enough to know that even if my tests come back negative, I have to do something! It is up to me and not some doc reading some lab report.

Thanks for your responses!

Jeannine

aikiducky Apprentice
aikiducky
Posted

Has your dermatologist biopsied the rash? A skin biopsy would show whether or not it is dermatitis herpetiformis (hope I spelled that right!) and if you have DH you have celiac. Of course the dermatologist would have to be a little bit knowledgeable about DH to make a correct interpretation of the biopsy, so that is a concern...

Pauliina

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