FGFP

  starsweet said:

Ok I'm going to make my history short... my skin would have a major breakout every few months or so starting back in 2001. Actually the first time I broke out, it was really small and the doctor (who may have been incompetent) said it was shingles which is weird since I was only 20 at the time and in college. So finally in 2005 or so I went to a integrative doctor who told me to immediately stop eating gluten and casein. I did and felt a bit better. I took an IgG blood test which said I had increased levels of IgG to eggs, milk, soy, wheat, and peanuts (roughly in that order... the highest was to eggs and lowest to peanuts). So I stopped eating all the stuff (including gluten, not just wheat) and my skin has been a ton better. I still have a few lesions but nothing like the major breakouts I used to have (and actually I don't experience any more major breakouts). I was reading about celiac and DH and my lesions look a lot like DH which really freaks me out. The only thing is they are not exactly symmetric and I don't get them in the typical places it says, I get it mostly on the arms, legs, sides/hips, and waist area. And when they heal they aren't purplish, more like brown but that may be due to my ethnicity (I'm from India). I have no GI symptoms and never have, even when I used to eat everything. I'm scared to death I have DH/celiac and the only way I'm surviving now mentally is to keep telling myself all this is not permanent, just some temporary intolerances because I can't bear to think that can't have pizza ever again. I have not had any tests done yet except a urine test for organic acids (since my doc initially thought I had candida yeast) which indicated no yeast but I do have high levels of some bad bacteria (poor gut flora). The test also said I had very low levels of B vitamins, low CoQ10, low alpha lipoic acid, and low neurotransmitters, basically I was low in nearly everything needed to produce energy (which makes sense since I still have no energy, even after my new diet-doctor said I have very poor carbohydrate metabolism and I am a poor methylator). Anyway, if I wanted to get a skin biopsy, can someone explain to me what I should so that the doctor does it properly? Does it hurt? Do I also have to have an intestinal biopsy? My doc gave me an order for a celiac panel through blood work, but is that the proper way to go or should I get a skin biopsy of the lesion first? I am not currently eating gluten except for a slice of pizza I had two weeks ago (ok I cheated).

Also can someone explain the iodine thing? If I put topical iodine on my skin then it should make my lesions worse, if i do have DH and therefore celiac? Do you put it on the lesion? Will this work if I have been gluten free for a while (other than that pizza)?

Also is DH sensitive to sunlight? If it always is, then I shouldn't have it because sun doesn't bother me at all. Does my skin thing even sound like DH at all? Oh if I do get a blister when it breaks the fluid looks like honey but I don't know if that matters or not since maybe a lot of types of eczema look like they have honeyed pus?

I'm just really hoping these are all temporary intolerances due to the bad bacteria in my gut. I am taking probiotics and have improved, but I still experienced tingling skin when I had that one slice of pizza.

Sorry so long... I really need some help.

Oh yeah, one more thing, I have had hair loss since I was 15 (starting around 1996 or so) and am losing a lot less now but is not growing back as I thought it would.

I have had DH for about 30 years. I was also diagnosed with allergy to iodine. I didn't know at the time I had celiac and only found that out by accident 5 years ago. My outbreaks mostly start first on my elbows and knees, but they can be anywhere and I mean anywhere. The sunlight actually is good for DH. It helps to dry up the areas. I have really never noticed what color the fluid is like, guess I will notice next time. I just know they itch like crazy and I keep them popped so they can dry out. I also use an antibiotic cream to help keep it from getting infected. I had a biopsy and I don't remember any pain. They gave me a deading shot. They took an actual blister and it left a big enough spot to need a stitch. Personally I would reather know than wonder do I or don't I.

I have DH and was diagnosed in 1977. I was told also I was allergic to iodine. I was told I shouldn't eat wheat but after trying to avoid it I said forget it. If I knew at the time I had celiac I would have maybe had a different mind set. I was told and have read in many articles that many people with DH also are allergic to Iodine. I no longer have iodine in my diet, but can find it hard if I am gone from home for many days. I often carry my own salt. If I get a breakout I can almost always look back and realize I had iodine in the salt.

Good morning, I was just looking around and found this. I just registered. I was raised in Ok and go there all the time as I have a daughter who lives in Edmond and goes to OC. I have a lot of family that are still in OK. I actually live in Texas panhandle but still consider myself an Okie.