Lost

[wildapple]

10 years ago I developed a nasty rash that would come and go. It could be anywhere on my body. Would start out as a small pimple and quickly progress to hot, raised, incredibly itchy patches.

Have gone to 3 dermatologists and they say it is atopic dermatitis (a skin biopsy was done).

Went to an allergy doctor who took a look at it and said I didn't have an allergy, although he didn't test for any.

Have recently been diagnosed with Hashimoto's Thyroid and osteopenia. No digestive symptoms other than lots of flatulence. I am 60.

At the present time the rash has come to stay and has been here 4 months now. Previously it would only last 2-3 weeks.

Could this be celiac?

Thank you for your help.

[Marilyn R]

Biopsies aren't always 100%. I know a medical assistant that had MRSA from a fresh tatoo. She had the site biopsied 3 times. The 1st and 2nd came out negative for MRSA. She said she told the derm. to really dig down there and take a good biopsy the 3rd time, and it came up positive.

This may not be the case with you, but thought it was relevant. Have you requested the celiac blood panel from your primary care physician or had an endoscopy?

You already have two autoimmune diseases, I'm guessing the blistering is a third since the derms. and allergist didn't diagnose you. I know someone with Bullous pemphigoid, which involves blisters but they're large, not clustered.

Insist on further testing ASAP, and if you don't get a positive, I'd still try a Gluten Free Diet for several months to see if there is an improvement.

Have your dr's advised you to avoid soy due to Hashimoto's? I hope the posters who are up to speed up to speed on thyroid diseases chime in here.

Good luck to you, hope this is helpful. To sum up a long post, yes, it could be celiac disease or gluten intolerance. You have a number of indicators. If you have 1st degree relatives with autoimmune diseases, that increases your liklihood too.

[GFinDC]

could be Dh dermatitis herpetiformis. DH is a skin condition only celiacs get. They biopsy the skin near the lesion or blisters,not the lesions itself. They look for antibodies in the biopsy. Check out the DH forum on this site for lots more info. It is described as incredibly itchy, so that fits.

Also, Hashimoto's thyroiditis is more common in people with celiac than the general population.

[wildapple]

Biopsies aren't always 100%. I know a medical assistant that had MRSA from a fresh tatoo. She had the site biopsied 3 times. The 1st and 2nd came out negative for MRSA. She said she told the derm. to really dig down there and take a good biopsy the 3rd time, and it came up positive.

This may not be the case with you, but thought it was relevant. Have you requested the celiac blood panel from your primary care physician or had an endoscopy?

You already have two autoimmune diseases, I'm guessing the blistering is a third since the derms. and allergist didn't diagnose you. I know someone with Bullous pemphigoid, which involves blisters but they're large, not clustered.

Insist on further testing ASAP, and if you don't get a positive, I'd still try a Gluten Free Diet for several months to see if there is an improvement.

Have your dr's advised you to avoid soy due to Hashimoto's? I hope the posters who are up to speed up to speed on thyroid diseases chime in here.

Good luck to you, hope this is helpful. To sum up a long post, yes, it could be celiac disease or gluten intolerance. You have a number of indicators. If you have 1st degree relatives with autoimmune diseases, that increases your liklihood too.

Thanks, Marilyn. That's good info.

I've been reading on this site much of the afternoon and now know that the biopsy that was done was done incorrectly. It should have been done from healthy skin and it was done on a leision.

No one has ever told me to avoid soy. Another eyeopener. I guess it makes the Hashi's worse?

I have been "trying" to be gluten free for about a week now, but haven't been as strict as I should. For instance I ate grits this morning and the package said "it may contain wheat and milk."

I've got a lot to learn.

[beachbirdie]

Hashimoto's and celiac are very frequent companions. There is an article referring to a Dutch study posted here at celiac.com that makes a good case for people with Hashi's to try eating gluten free. I have even seen it suggested that Hashimoto's mmight be a facet of gluten sensitivity, because the antibodies that form against the thyroid often (not always!) are aggravated by gluten in the diet.

I have heard of Hashi's people who have skin problems, so it could be related but I think they were having hives, not a blstery rash.

You need a good GP or a gastrointestinal specialist, and ask for a celiac blood panel. You need to be eating a good dose of gluten-containing foods for a while (3 months maybe) before having the test. False negatives are common. If your insurance will cover, the endoscopic biopsy of your intestine is a good test.

Since your Hashi's diagnosis, have you added any supplements? Some people start taking iodine when they find out they have thyroid problems, that is not a good thing when you have autoimmune thyroid. It also seems to aggravate dermatitis herpetiformis in people with celiac.

In any case, if you cannot get testing, or do not want to pursue further testing, try a gluten free diet. It's free, and you don't need a doctor's prescription. You will have to learn to read labels carefully, there are foods that contain ingredients derived from foods with gluten, but they masquerade with unrecognizable names!

And things like soy sauce, most have wheat (there are some that are wheat free).

If you do a fresh, whole-foods kind of diet (fresh fruits and vegetables, lean, unprocessed meats) you will do pretty well. Wheat, barley, rye and oats are the foods to avoid. Some people seem to do okay with oats that are certified gluten-free, some not so well, so I would probably avoid all while doing the diet at first.

I have Hashi's, and I've chosen to do gluten free (except for right now, I'm eating a wad of it for one more blood test). I do feel much better when not eating it.

If you are not accustomed to doing so, this is a good time to get copies of all your lab test results and start a file that you can keep. So often doctors will say you have nothing to worry about, when you are almost out of a range (but not quite). Docs just won't do anything for borderline people, they wait until you get really sick before they react. You want to be proactive before you get damaged!

Hope that's a little bit helpful.

[wildapple]

could be Dh dermatitis herpetiformis. DH is a skin condition only celiacs get. They biopsy the skin near the lesion or blisters,not the lesions itself. They look for antibodies in the biopsy. Check out the DH forum on this site for lots more info. It is described as incredibly itchy, so that fits.

Also, Hashimoto's thyroiditis is more common in people with celiac than the general population.

Thanks, Paul.

As I explained to Marilyn they did the biopsy wrong as they took skin from a lesion. I am finding the DH forum quite interesting. Learning so much, but I still feel lost and overwhelmed. How did you find out there were so many things you couldn't eat?

[Marilyn R]

Thanks, Paul.

As I explained to Marilyn they did the biopsy wrong as they took skin from a lesion. I am finding the DH forum quite interesting. Learning so much, but I still feel lost and overwhelmed. How did you find out there were so many things you couldn't eat?

Hi wildapple, just interuppting here. It is overwhelming at first.

If you want to get diagnosed, don't start going gluten-free now, just research it and think about it to get your mind in the right place, and make a plan. And try to focus on all of the really great things you can eat.

You can't buy processed overpriced yucky stuff. You can still eat very good things, will have to cook more, might find that you enjoy it. And if you have celiac disease, your worst days after going gluten-free will be better than your best days before. I hope you find your answer.

We're here for you when you feel lost, bummed, upset, we've all been there, so you found a good place.

[GFinDC]

Hi WApple,

A couple things for or you. Soy is bad for the thyroid because it inhibits the thyroids ability to use iodine. It is considered a "goitrogen" for that reason. There are other foods that also are goitrogens. Soy is one of the worst though and you can do some searches and read about infants that were given soy formula and developed goiters.

I found out about my other food intolerances by doing an elimination diet, or rather 3 separate elimination diets over a period of time. Elimination diets are a good way to test your body for reactions to foods. Lots of threads on them here too.

[wildapple]

Hi WApple,

A couple things for or you. Soy is bad for the thyroid because it inhibits the thyroids ability to use iodine. It is considered a "goitrogen" for that reason. There are other foods that also are goitrogens. Soy is one of the worst though and you can do some searches and read about infants that were given soy formula and developed goiters.

I found out about my other food intolerances by doing an elimination diet, or rather 3 separate elimination diets over a period of time. Elimination diets are a good way to test your body for reactions to foods. Lots of threads on them here too.

Thanks again. May look into elimination diet. Don't have the insurance to see another doctor.

I surely didn't know that about soy. Thought it was supposed to be good for gals. Oh well, can't believe what you hear on TV. Ha!