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Dh After Being Gluten Free

bincongo

By bincongo
in Dermatitis Herpetiformis

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bincongo Contributor
bincongo
Posted

I thought I was one of the lucky ones and didn't have to deal with DH but now I think I have it. I was diagnosed Celiac in July 2010 and have been gluten free since then. My blood work 2 weeks ago said I was doing very well on my diet, no antibiodies. So why do I now develop DH? I may have had an occasional sore through the years but now I have a rash on my upper chest and much of my back. I do know I have been consistant in taking a multivitamin because of my celiac and it has iodine. I don't eat much shellfish but have on occasion eaten halibut that my husband caught himself. Is it all fish or just shell fish that are a problem? I will change my salt too. I have to take thyroid medicine. Do they all have iodine?

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cahill Collaborator
cahill
Posted

I thought I was one of the lucky ones and didn't have to deal with DH but now I think I have it. I was diagnosed Celiac in July 2010 and have been gluten free since then. My blood work 2 weeks ago said I was doing very well on my diet, no antibiodies. So why do I now develop DH? I may have had an occasional sore through the years but now I have a rash on my upper chest and much of my back. I do know I have been consistant in taking a multivitamin because of my celiac and it has iodine. I don't eat much shellfish but have on occasion eaten halibut that my husband caught himself. Is it all fish or just shell fish that are a problem? I will change my salt too. I have to take thyroid medicine. Do they all have iodine?

As far as fish is concerned if it comes from the sea it will be high in iodine.Same for seaweed (and products made with seaweed) or sea vegetables.

My understanding is that all thyroid meds contain iodine.Iodine is essential for thyroid function.

When I was taking a vitamin supplement that contained iodine my DH was the worst I EVER remember it being.

For me it is a balancing act, I take medication for my thyroid,,Iodine is essential for thyroid health and function. but I have DH and the iodine exacerbates my DH .. Finding a balance seems like an impossible task but a very necessary one for my health

I no longer take the vitamin supplement that contained iodine.I watch my sodium intake( I use non-iodized sea salt in limited amounts). I am trying to find the limit of what is to much fish in my diet and My doc retests my thyroid every three months

itchy Rookie
itchy
Posted

Bincongo wrote: "My blood work 2 weeks ago said I was doing very well on my diet, no antibiodies. So why do I now develop DH?"

Assuming it IS DH, I think that DH may be more sensitive to diet than obvious gastro intestinal symptoms are. A year ago when I got DH on my forearms and realised that my GI symptoms really were celiac, all the GI symptoms disappeared immediately with a more strict diet. The DH on the other hand comes back in force whenever I make even a small dietary mistake.

Also, though the DH has improved dramatically in a year it has also spread to some new areas like my upper arms and hairline. This suggest that either there was a certain 'momentum' in the process, or that whatever changes in my body that allow DH to manifest are continuing and causing me to be increasingly sensitive. The same might be true for you.

I guess what I am saying is that perhaps you should consider that your diet isn't strict enough to keep down DH, even though you have no obvious GI symptoms.

I have never tested positive for antibodies in my blood, and I think that blood tests won't be effective for detecting the amount of immune response that will create DH. A celiac needs to be consuming gluten at levels far below what a blood test can pick up, so far as I know.

dilettantesteph Collaborator
dilettantesteph
Posted

I agree with itchy based on my experience. DH seems to appear at lower levels of gluten contamination and can require a more strict diet. Then again, it is a great indicator of cc and can probably help prevent serious complications from developing. I don't know if that is worth all the itching though.

bincongo Contributor
bincongo
Posted
  • Author

I guess my basic question is why would the DH show up now that I am gluten free. I am very careful about my diet and everything that has gluten. My blood work shows a pregression to my being gluten free and I am normal now for antibody response. I know the blood work can be wrong but it my case it has shown improvement which I would expect if I am doing the right things. I am a diagnosed Celiac by biopsy. I did not have many GI symptoms so I don't rely on them to tell me if I have made a mistake. If DH is more sensitive to gluten than GI symptoms you would think I would have noticed the DH before I went gluten free. I know there is a chance it isn't DH but I can't get a Dermatologist appointment until April. It sounds like the symptoms that people are describing on this site. I have thought about going to my regular doctor but am not sure she would recognise DH. Do people go on medicine for DH just to see if it works and then if it does they know it was DH?

cahill Collaborator
cahill
Posted

I guess my basic question is why would the DH show up now that I am gluten free. I am very careful about my diet and everything that has gluten. My blood work shows a pregression to my being gluten free and I am normal now for antibody response. I know the blood work can be wrong but it my case it has shown improvement which I would expect if I am doing the right things. I am a diagnosed Celiac by biopsy. I did not have many GI symptoms so I don't rely on them to tell me if I have made a mistake. If DH is more sensitive to gluten than GI symptoms you would think I would have noticed the DH before I went gluten free. I know there is a chance it isn't DH but I can't get a Dermatologist appointment until April. It sounds like the symptoms that people are describing on this site. I have thought about going to my regular doctor but am not sure she would recognise DH. Do people go on medicine for DH just to see if it works and then if it does they know it was DH?

as to your question " why would DH show up now that you are gluten free"

sorry I dont have an answer for you,, All i know is mine is GREATLY effected by how much iodine I consume.

DH is diagnosed by biopsy ,you need to see your dermatologist for that.

Open Original Shared Link

this is a site that shows different pictures of diagnosed DH

** FYI ** I would not open with children in the room

bincongo Contributor
bincongo
Posted
  • Author

Thanks for your reply. I do think that taking out the vitamin with iodine has helped. Maybe that was what irritated it. I can't get a Dermatologist appointment until April. The site with pictures helped and that is why I do think I have DH but not as bad as the pictures. The spots that I do have look like the one ladies back but I don't have as many. Using Benadryl lotion seems to help at night. I have to have my husband put it on and he isn't too crazy about that. :)

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