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Could Really Use Some Advice

mommyoftwinks

By mommyoftwinks
in Dermatitis Herpetiformis

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mommyoftwinks Explorer
mommyoftwinks
Posted

i had an endoscopy back in 2007 and was told i didnt have 'evidence' of celiac. (constipation and bloating all my life and 'new' evidence of hives started).

that was it. to be honest, i do think they biopsied me but am not 100% sure. when i took my reports to another doc for a 2nd opinion, he said the report didn't say where they got the biopsy from and that's a pretty big deal.

i have had countless allergy tests run, seen an immunologist who performed a celiac blood panel. he said it was 'negative' and my IgA was also negative. however, my IgE was extremely elevated and so was my IgM. he said i didn't have celiac. my grandmother died of colorectal cancer and my dad is very ill from colon cancer now. i am no sure if this could be related but thought i would make mention.

i get a rash on my lower extremities. (legs, buttocks, lower hips only.

doctors said it's hives, that's it. i have 'no allergies.' i recently saw a nutritionist who did some applied kinesiology to me and told me i did have a sensitivity to wheat. i know that sensitivities and allergies are different but i was really hoping for some advice on what to do. i'm at a loss; this has been going on for 3 years. is there another test i could have done to see what it really is? do i have another endoscopy done?

eta - i know that hives are not the same thing. these look like hives then get red/blotchy and at burn and itch at the same time. worst thing in the world!! they then turn redish/purply but form a rash and stay small. i saw 3 derms, all said something different. (hives, foliculits, excema)

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starrytrekchic Apprentice
starrytrekchic
Posted

I believe you can have the hives themselves biopsied to test for dermatitis herpetformitis. That only occurs with celiac, so if it comes back positive, you'll have a celiac diagnosis.

That would be my first step. My other would be to get copies of all your old test results, if you can. Post them and one of the more knowledgeable posters might be able to help you decipher them.

mommyoftwinks Explorer
mommyoftwinks
Posted
  • Author

I had a 'hive' biopsied. the a** never tested them for celiac; instead he tested them for vasculitis. ugh!

mushroom Proficient
mushroom
Posted

If the biopsy is to test for DH, it needs to be taken from skin immediately adjacent to the lesion and not of the lesion itself, because that's where the antibodies will be found. A biopsy of the lesion will reveal nothing. From your description, "these look like hives then get red/blotchy and at burn and itch at the same time. worst thing in the world!! they then turn redish/purply but form a rash and stay small." this definitely sounds like DH. Do they leave a scar as they fade?

mommyoftwinks Explorer
mommyoftwinks
Posted
  • Author

yes and my legs haven't looked 'themselves' for about a year. LOL. :)

i would hate to have another biposy off my leg but would do it.

mushroom Proficient
mushroom
Posted

yes and my legs haven't looked 'themselves' for about a year. LOL. :)

i would hate to have another biposy off my leg but would do it.

Well, MY legs haven't looked 'themselves' for many years, too, but that is a different story :o:blink:

The story here is, you have had bloating and constipation all your life, you have the apparent skin manifestations of celiac disease.

The allergy testing you had done would not prove anything to do with celiac disease. You had an endoscopy with apparently one biopsy sample taken from an unspecified area which ?apparently was tested negative for celiac. You had some celiac blood work done in 2007 which was reported as negative; however, the immunologist who did this testing also reported your IGA was negative and it is not clear whether this was total serum IGA, which, if low, would negate the other blood test results. You have had a 'hive' biopsied but the biopsy was of the lesion itself and was not tested for celiac.

Now, the first thing you should know is that you really have not had a full celiac workup in all the testing you have had done. The second is that there is an approximate 20% false negative rate on the testing, both blood and biopsy, and this is more frequently seen in those whose celiac manifests itself as DH, the skin form. If you get a proper biopsy done of your skin lesions (adjacent to an active lesion, not on it) and it is specifically tested for celiac and it is positive, you have a diagnosis, End of story.

I think you either need to do it (if you really need the diagnosis) or look at the examples of your father and grandmother and give up gluten for good :) Dermatitis herpetiformis as I believe you know is the skin form of celiac. Celiac is a genetically inheritable disease. Untreated, it can lead to cancers, the most common being lymphoma, but also colorectal cancer.

takeiteasy Rookie
takeiteasy
Posted

Well, MY legs haven't looked 'themselves' for many years, too, but that is a different story :o:blink:

The story here is, you have had bloating and constipation all your life, you have the apparent skin manifestations of celiac disease.

The allergy testing you had done would not prove anything to do with celiac disease. You had an endoscopy with apparently one biopsy sample taken from an unspecified area which ?apparently was tested negative for celiac. You had some celiac blood work done in 2007 which was reported as negative; however, the immunologist who did this testing also reported your IGA was negative and it is not clear whether this was total serum IGA, which, if low, would negate the other blood test results. You have had a 'hive' biopsied but the biopsy was of the lesion itself and was not tested for celiac.

Now, the first thing you should know is that you really have not had a full celiac workup in all the testing you have had done. The second is that there is an approximate 20% false negative rate on the testing, both blood and biopsy, and this is more frequently seen in those whose celiac manifests itself as DH, the skin form. If you get a proper biopsy done of your skin lesions (adjacent to an active lesion, not on it) and it is specifically tested for celiac and it is positive, you have a diagnosis, End of story.

I think you either need to do it (if you really need the diagnosis) or look at the examples of your father and grandmother and give up gluten for good :) Dermatitis herpetiformis as I believe you know is the skin form of celiac. Celiac is a genetically inheritable disease. Untreated, it can lead to cancers, the most common being lymphoma, but also colorectal cancer.

My story is exactly the same. The gastro docs said it's in my head and that I should get a grip on my life, and the skin docs said they have no idea what it is. I was finally diagnosed by a skin specialist who didn't take any tests. He studied my history of tests which I brought with me and he listened while I told him all that I've been through (ten years of no diagnosis)and took one look at my skin and said "you have celiac". The biopsies taken of my skin lesions were taken directly of the lesion and my upper & lower endoscopies (yes I had these tests taken more than once!) showed negative. I've been gluten free now for a year and "gluten free oat" free for two months. I'm feeling better but have a way to go. I know it could take 6 months to a year for the symptoms to go away, so I advise you to go gluten free. Do it for at least a year, be very meticulous and make sure not to cross contaminate. You will know after a year if you are on the right track. It's worth a try. Good luck.

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Skylark Collaborator
Skylark
Posted

Mommyoftwinks, have you tried the diet? That is the ultimate test.

  • 3 weeks later...
dh mom Newbie
dh mom
Posted

Hi, the other folks are correct, the area to biopsy is next to lesion, not the lesion itself. The old 'back in the day' test for DH was to take Iodine, and rub it on the skin. If it blisters, you were positive. You mentioned sushi. You need to be more concerned about the wheat in the soy sauce, rather than the iodine in the seaweed. Also, you REALLY need to pay attention and stay off of the gluten. You can't go half way. and it is hard, and it is a pain, and yes, it easily could take 9 mos, possibly a year. The pustules I have seen are filled with a fluid, and when they break, fluid runs out of them. Typically, this rash starts on the front of the knees, the elbows, and down the center of your butt.(great huh?) It certainly does spread to arms, back, neck face etc. If you get a diagnosis, and go on Dapsone (which is what they usually put you on, if you can't tolerate Dapsone, DO NOT LET THE DOCS PUT YOU ON STEROIDS. They are sooo bad for you. Jacobus pharmecuticals has a medicine which they make called Sulfapyradine. It is actually an old medicine which they give to you for free (as a trial drug) as it is less expensive than bringing it to market. ((most folks do okay with dapsone). Sulfapyradine is mailed to your doctor and then you pick it up from them. Medicine for pustules and itching is not a lifetime script, you only need it until your intestines repair themselves, (up to a year), and on the occasion when you get into gluten. But seriously, stay off of the steroids. Good luck.

HisMusicNMe Newbie
HisMusicNMe
Posted

I am so sorry that you have had so much trouble with diagnoses and doctors. I feel your pain :) I have Celiac and was experiencing what I know now to most likely be Dermatitis Herpetiformis - The rashes were on my legs (especially after a lot of walking, like at Disneyland) and near/at my scalp. I went to a Vascular specialist even who ran several tests and came up with nothing :(

A very long story short, I began taking an herbal tincture called ParaPure and a Food-Grade powder of D.E. (Diatomaceous Earth), because I was next to certain I had parasites (I'd been in Africa and later deduced that I most likely had some types prior to my trip, although I picked up a few more while out of the country). Well, the ParaPure & D.E. cleared up with rash! I had been reading some claiming that parasites can ALSO cause this Dermatitis Herpetiformis like rash. Hmmm, who knows whether or not the rashing was from the Celiac or from Parasite really, but what I am happy about is that my rashes cleared up after using this tincture and powder; not to return as of yet (it's been about 9 months) :P:) - I continually take these products on a regular basis with a week or two break here and there, because I feel sooo much better when I do.

Just so you know, parasites can also cause the symptoms that you describe and some types can use your body as host for 20 - 30 years without you realizing it. So, it might be something worth treating just in case (that's a whole other book). I personally don't feel that our doctor's have had enough appropriate or truthful education concerning Celiac or parasites for that matter. It isn't their fault really. There just isn't the sure all of diagnoses with the tests that are available in my opinion. I often think that we are missing something as far as Celiac is concerned, and that we haven't discovered everything there is to know about it yet. Maybe someday though :)

Just keep up with removing gluten and other irritating foods from your diet and do your best to stay healthy :D=]

~ God Bless! ~

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