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JenKuz

Please Look At My Photos?

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I'm having skin stuff that seems like it could be DH (was quasi-diagnosed with Celiac, see Enterolab results below).

I've this stuff on-going since about 12, with a couple of especially bad bouts. When I was younger, it was around the thighs from top to knee, intensely itchy, on both sides.

Now it is not symmetric, it is only on my right thigh. My scalp is also very itchy, and (strangely) the pad of my index finger is so itchy I'm finding myself biting at it like a dog to scratch. heh.

I am also have some immune stuff going on my corneas, and this is all concurrent with a relapse of GI symptoms from when I went gluten-free last November. I haven't had any gluten purposefully, but eat out a lot, and usually don't give them special prep instructions.

I am planning on going on a no-processed-foods diet starting immediately. However, I also need to decide whether to bother going to doc for this skin stuff. I have not been diagnosed *officially* with celiac; I waver about whether this is a blessing or a curse. No pre-existing condition on one hand, no docs who know what to do with me, no ability to say without doubt that I have it, on the other.

If they biopsy and it's positive for DH, I fear they will ask me to go through another endoscopy. The last time the doc didn't go down past the duodenum, and never took biopsies of the small bowel, so it was a nice waste of time and money for me. On the other hand, if that's what it is, I would love some kind of TREATMENT cause I'm miserable.

So. I'm not really comfortable posting a picture here....but I was hoping that someone might be willing to let me email them to you and take a look and at least you can tell me, Yes, that could be DH, or No, that totally doesn't look like DH.


Enterolab:

Fecal Antigliadin IgA 20 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 9 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1223 Units (Normal Range <300 Units)

Fecal Anti-Soy IgA 18 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

Gastritis dx 10/24

Eosinophilia of large bowel dx 10/29

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Jen,

I don't know about DH, but if you go strict, even with cc issues eating out and it doesn't get better you need to have further testing done....preferable with a good naturopath/holistic type doctor or LLMD.

The rash could be from gluten or another food intolerance. It could be from a number of things. With your malabsorption score it would seem something else is going on. Have you thought of retesting through enterolab to see if your malabsorption score has gone down? Do you have vitamin/mineral deficiencies? Have you been tested for parasite/yeast etc.?

If I remember correctly, you've spent time in other countries (forget where). Could be you picked up something that hasn't been resolved. :unsure:


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Hi Andrea :) You remember me!

I got better (very much better) after cutting out gluten. But I seem to be having a relapse now. I think it's partly because at first I was eating almost all whole, home prepared foods, and now I've gotten back into the habit of eating more packaged foods, relying on ingredients labels, and eating out, all of which are no-nos, I know.

I also (I'm ashamed, yes) have not been careful about avoiding soy, even though I tested positive. I don't eat tofu or anything, and I cut out peanut butter, but I don't avoid soy on labels. Well, I am now. But haven't been. I'm kind of hoping that will help and then I will have something of an answer...

I've thought about having enterolab tests again.

I did travel in Zambia, and that's when my problems started. Initially I suspected a pathogen like giardia, and had gobs and gobs of repeated tests for parasites, all negative (and all expensive :angry: )

As for the deficiencies, I've never been tested for any. I have crappy insurance in a crappy system, and had a pretty crappy GI doc. I have suspected some, because after I'd been sick for a bit I started having bad muscle spasms, so I suspected magnesium deficiency...

Otherwise, I guess I just don't know. I'm moving to Germany in two months, so there's only so much I can arrange for before I go. I suspect I'll find decent care there (and I will be insured there) so part of me wants to just wait until I move and then find some good integrative doctors there....

And then gorge myself on the delicious chocolate corn wafers they have :D

Jen,

I don't know about DH, but if you go strict, even with cc issues eating out and it doesn't get better you need to have further testing done....preferable with a good naturopath/holistic type doctor or LLMD.

The rash could be from gluten or another food intolerance. It could be from a number of things. With your malabsorption score it would seem something else is going on. Have you thought of retesting through enterolab to see if your malabsorption score has gone down? Do you have vitamin/mineral deficiencies? Have you been tested for parasite/yeast etc.?

If I remember correctly, you've spent time in other countries (forget where). Could be you picked up something that hasn't been resolved. :unsure:


Enterolab:

Fecal Antigliadin IgA 20 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 9 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1223 Units (Normal Range <300 Units)

Fecal Anti-Soy IgA 18 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

Gastritis dx 10/24

Eosinophilia of large bowel dx 10/29

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I was wondering where you where and how you were doing.

I don't know if you remember Rachel who also had a high malabsorption. She's been diagnosed with mercury toxicity along with lyme and candida (due to the metals). She saw a LLMD. A good one will test you for everything under the sun. Don't know if you want to try and do that before you leave or when you get to Germany though.

It would most likely be out of pocket if your insurance is anything like ours. <_<

Definately stay off the soy. That can cause a lot of problems as well. I haven't read much good about soy (on some sites anyway :rolleyes: ).

If you eat real clean for a couple months and things don't improve, definately look into further testing with an intergrative doctor in Germany.

Make sure you check in here when you are over there.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I'm having skin stuff that seems like it could be DH (was quasi-diagnosed with Celiac, see Enterolab results below).

I've this stuff on-going since about 12, with a couple of especially bad bouts. When I was younger, it was around the thighs from top to knee, intensely itchy, on both sides.

Now it is not symmetric, it is only on my right thigh. My scalp is also very itchy, and (strangely) the pad of my index finger is so itchy I'm finding myself biting at it like a dog to scratch. heh.

I am also have some immune stuff going on my corneas, and this is all concurrent with a relapse of GI symptoms from when I went gluten-free last November. I haven't had any gluten purposefully, but eat out a lot, and usually don't give them special prep instructions.

I am planning on going on a no-processed-foods diet starting immediately. However, I also need to decide whether to bother going to doc for this skin stuff. I have not been diagnosed *officially* with celiac; I waver about whether this is a blessing or a curse. No pre-existing condition on one hand, no docs who know what to do with me, no ability to say without doubt that I have it, on the other.

If they biopsy and it's positive for DH, I fear they will ask me to go through another endoscopy. The last time the doc didn't go down past the duodenum, and never took biopsies of the small bowel, so it was a nice waste of time and money for me. On the other hand, if that's what it is, I would love some kind of TREATMENT cause I'm miserable.

So. I'm not really comfortable posting a picture here....but I was hoping that someone might be willing to let me email them to you and take a look and at least you can tell me, Yes, that could be DH, or No, that totally doesn't look like DH.

Hi,

It was like looking at myself 8 years ago...My mom has celiac, she figured it out herself when she was 35yrs old(I was about 14 yrs old at the time), and my own skin cleared right up while I lived at home...When I moved out, not knowing that I have celiac disease, my face broke out very badly from the gluten rich diet of pizzas, hamburgers, macaroni and cheese, etc...5 years later and many doctors later, including a dermatologist, and many, many prescriptions for tetracycline(an antibiotic to clear up acne), acutane, hydrocortisone creams, sugar free diets, caffiene free diets, and anything else I could think of, we finally figured out it is celiac, and my face cleared right up when I stopped eating things with flour in them...I had the rashy acne on my face, neck, shoulders, down my back, intensely itchy skin on my face and shoulders, and if my diet was really bad, I'd get a patch of skin on my body(an arm, a leg, my scalp, it was always a different spot each time) that would hurt intensely if touched...Just try wearing clothes when it hurts to touch your own skin...Most of that has all cleared up, especially the itchy part...Anyways, what I'm trying to say is, try the celiac diet and see if it clears things up...It may, it may not, everyone is different...I've also noticed that zinc cream, the same stuff you put on a baby's bottom, is very good for my skin...It has certain medical properties in it that really helps with skin rashes and mild acne...I take a cheap face cloth in the shower(it has to have texture, not be soft and fluffy), and give my face, neck, and shoulders a gentle rub(this is the best exfoliation out there, never mind all the commercials on tv) every morning in the shower, rinse, and rub on the zinc right in the shower(it's a wonderful moisturizer if you put it on when your face is wet...Then when you towel dry after your shower, you dry off your face, which removes the greasiness of the zinc, and you're good to put on your make up...Then wash off your make up at the end of the day(again, a wet washcloth is all I use, and a mild handcream to take of mascara if I wear any), and apply zinc at bedtime...Sure, you'll glow in the dark and smell baby fresh, but you'll have lovely skin...But try the celiac diet and see if your skin clears up first...None of these beauty tips will work if you haven't found the cause of the acne...Oh, and I've also found that Olay moisturinse in the shower is wonderful for itchy skin, too, on your arms and legs, but not for your face...Hope all this helps and hope I haven't overwhelmed you...Good Luck!

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Hi,

It was like looking at myself 8 years ago...My mom has celiac, she figured it out herself when she was 35yrs old(I was about 14 yrs old at the time), and my own skin cleared right up while I lived at home...When I moved out, not knowing that I have celiac disease, my face broke out very badly from the gluten rich diet of pizzas, hamburgers, macaroni and cheese, etc...5 years later and many doctors later, including a dermatologist, and many, many prescriptions for tetracycline(an antibiotic to clear up acne), acutane, hydrocortisone creams, sugar free diets, caffiene free diets, and anything else I could think of, we finally figured out it is celiac, and my face cleared right up when I stopped eating things with flour in them...I had the rashy acne on my face, neck, shoulders, down my back, intensely itchy skin on my face and shoulders, and if my diet was really bad, I'd get a patch of skin on my body(an arm, a leg, my scalp, it was always a different spot each time) that would hurt intensely if touched...Just try wearing clothes when it hurts to touch your own skin...Most of that has all cleared up, especially the itchy part...Anyways, what I'm trying to say is, try the celiac diet and see if it clears things up...It may, it may not, everyone is different...I've also noticed that zinc cream, the same stuff you put on a baby's bottom, is very good for my skin...It has certain medical properties in it that really helps with skin rashes and mild acne...I take a cheap face cloth in the shower(it has to have texture, not be soft and fluffy), and give my face, neck, and shoulders a gentle rub(this is the best exfoliation out there, never mind all the commercials on tv) every morning in the shower, rinse, and rub on the zinc right in the shower(it's a wonderful moisturizer if you put it on when your face is wet...Then when you towel dry after your shower, you dry off your face, which removes the greasiness of the zinc, and you're good to put on your make up...Then wash off your make up at the end of the day(again, a wet washcloth is all I use, and a mild handcream to take of mascara if I wear any), and apply zinc at bedtime...Sure, you'll glow in the dark and smell baby fresh, but you'll have lovely skin...But try the celiac diet and see if your skin clears up first...None of these beauty tips will work if you haven't found the cause of the acne...Oh, and I've also found that Olay moisturinse in the shower is wonderful for itchy skin, too, on your arms and legs, but not for your face...Hope all this helps and hope I haven't overwhelmed you...Good Luck!

Thanks so much for the tips, Ariesmama! I am going to give the zinc a try.

I actually have been gluten free since last November. However, I am not as careful as some are. I live alone, so CC at home is not much of an issue. But I eat out a lot, and I'm sure I get contaminated that way. I sort of hoped that my case would be a less-severe exception whereby I could get away with it. However, I fear that is not the case.

It's true that my occasional zits have cleared up since I cut out wheat. And in fact, the itchiness had gone away too, more or less. But I seem to be having some kind of relapse, b/c I have the steathorrea and diarrhea again, and also these rashes are back. ....... time to buckle down, I guess, and get super careful.


Enterolab:

Fecal Antigliadin IgA 20 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 9 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1223 Units (Normal Range <300 Units)

Fecal Anti-Soy IgA 18 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

Gastritis dx 10/24

Eosinophilia of large bowel dx 10/29

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