Everything Was Going Ok Then A Huge, Itchy Rash!

[Live4Hiking]

I was an in denial newbie about 1 yr ago. My doc said, nope you DONT have RA (xrays) but not sure why your blood tests were so high on sed rates, RA factor, etc. But I still had the tummy aches, joint pains, D, and overall flu feeling all the time, etc. Just menopause the doc said. Finally, I stumbled onto this site and self diagnosed a wheat allergy at minimum, especially when I cut out all wheat I felt so much better. No more joint pains, more energy, no bloating, aches. I had a biospy done (same time as a colonoscopy so why not?). They found no evidence of Celiac. Still.......I felt a whole lot better when I didnt eat wheat. So I have been trying to cut it out but would fall of the wagon maybe twice a week (and pay for it the next day or so). But it was no big deal til THE RASH. I now have my lower calves on both legs covered (and its spreading) with an almost poison oak like rash. Severely itchy, white raised puss filled blisters. In doing my online research, since I am so put off by docs (who had me convinced I had RA and wanted me on meds for 10 yrs!), I discover this rash is a symptom of Celiac disease. Questions:

1. Can you have only the rash and be a Celiac without evidence of intestinal damage?

2. What cream works or at least minimizes the itching? Cortisone does nothing.

3. If I am really, really good from now on, will the rash completely go away or should I now break down and go to a doc?

Thanks and yes, I am very humbled. I thought I could be a part time gluten-free girl.....um, no.

[nasalady]

I was an in denial newbie about 1 yr ago. My doc said, nope you DONT have RA (xrays) but not sure why your blood tests were so high on sed rates, RA factor, etc. But I still had the tummy aches, joint pains, D, and overall flu feeling all the time, etc. Just menopause the doc said. Finally, I stumbled onto this site and self diagnosed a wheat allergy at minimum, especially when I cut out all wheat I felt so much better. No more joint pains, more energy, no bloating, aches. I had a biospy done (same time as a colonoscopy so why not?). They found no evidence of Celiac. Still.......I felt a whole lot better when I didnt eat wheat. So I have been trying to cut it out but would fall of the wagon maybe twice a week (and pay for it the next day or so). But it was no big deal til THE RASH. I now have my lower calves on both legs covered (and its spreading) with an almost poison oak like rash. Severely itchy, white raised puss filled blisters. In doing my online research, since I am so put off by docs (who had me convinced I had RA and wanted me on meds for 10 yrs!), I discover this rash is a symptom of Celiac disease. Questions:

1. Can you have only the rash and be a Celiac without evidence of intestinal damage?

2. What cream works or at least minimizes the itching? Cortisone does nothing.

3. If I am really, really good from now on, will the rash completely go away or should I now break down and go to a doc?

Thanks and yes, I am very humbled. I thought I could be a part time gluten-free girl.....um, no.

First I want to say that I'm sorry you're going through this. My husband found out he has celiac disease by developing Dermatitis Herpetiformis (DH). He has had it for MONTHS now, although it is going away slowly (very sloooowwllly....).

If you can, you might want to go immediately to see a GOOD dermatologist (specifically one who has diagnosed DH before) and ask for a biopsy. The crucial thing is to have the doctor biopsy the clear skin NEXT TO the outbreak....he/she mustn't biopsy the lesions themselves. You need to be certain it really is DH, not something else. If it is DH, this is an automatic diagnosis of celiac disease.

Secondly, it is totally possible to have both celiac AND RA (I do!). In fact there is no limit to how many autoimmune diseases one can have simultaneously.....unfortunately. You still may have RA (but I do hope not, for your sake!).

To attempt to answer your questions:

1. Can you have only the rash and be a Celiac without evidence of intestinal damage?

Absolutely; research indicates that those with DH frequently have negative intestinal biopsies.

2. What cream works or at least minimizes the itching? Cortisone does nothing.

My husband is on an oral medication called Dapsone (prescription only), and it is helping him. The itching started to lessen almost immediately. But Dapsone has a lot of nasty side effects, so you may not want to take it. You'll have to discuss this with your doctor/dermatologist.

3. If I am really, really good from now on, will the rash completely go away or should I now break down and go to a doc?

You must be 100% gluten free....and if you've only been "gluten lite" up to this point, you need to read the following post on Karina's blogsite, which is an in-depth explanation of how to REALLY go gluten free:

Open Original Shared Link

The rash will go away eventually, even without Dapsone, if you are gluten free. BUT....people say it can literally take months or even years (up to two) to disappear completely. Which is why my husband is using Dapsone.

I hope you feel better soon!

JoAnn

[mushroom]

A year ago hubby decided he could cheat on the gluten free diet--specifically sourdough french and beer. It didn't take too long before he broke out in DH on his forehead, something he had never had before. He stopped the gluten and it went away within a couple of months and has not returned.

[Live4Hiking]

First I want to say that I'm sorry you're going through this. My husband found out he has celiac disease by developing Dermatitis Herpetiformis (DH). He has had it for MONTHS now, although it is going away slowly (very sloooowwllly....).

If you can, you might want to go immediately to see a GOOD dermatologist (specifically one who has diagnosed DH before) and ask for a biopsy. The crucial thing is to have the doctor biopsy the clear skin NEXT TO the outbreak....he/she mustn't biopsy the lesions themselves. You need to be certain it really is DH, not something else. If it is DH, this is an automatic diagnosis of celiac disease.

Secondly, it is totally possible to have both celiac AND RA (I do!). In fact there is no limit to how many autoimmune diseases one can have simultaneously.....unfortunately. You still may have RA (but I do hope not, for your sake!).

To attempt to answer your questions:

1. Can you have only the rash and be a Celiac without evidence of intestinal damage?

Absolutely; research indicates that those with DH frequently have negative intestinal biopsies.

2. What cream works or at least minimizes the itching? Cortisone does nothing.

My husband is on an oral medication called Dapsone (prescription only), and it is helping him. The itching started to lessen almost immediately. But Dapsone has a lot of nasty side effects, so you may not want to take it. You'll have to discuss this with your doctor/dermatologist.

3. If I am really, really good from now on, will the rash completely go away or should I now break down and go to a doc?

You must be 100% gluten free....and if you've only been "gluten lite" up to this point, you need to read the following post on Karina's blogsite, which is an in-depth explanation of how to REALLY go gluten free:

Open Original Shared Link

The rash will go away eventually, even without Dapsone, if you are gluten free. BUT....people say it can literally take months or even years (up to two) to disappear completely. Which is why my husband is using Dapsone.

I hope you feel better soon!

JoAnn

THANK YOU!!!! I am really, really trying to go gluten-free now and will next hunt for a good dermatologist.

[OptimisticMom42]

My co-worker also uses dapsone. He had hive like sores all over his body at one point, even in his eyes, not just on the lids, on his eyes. He takes his dapsone and eats stuff that would kill me like Rice Crispies. He buys a burger at a fast food joint and takes the bun off and throws it away.

He is getting sicker but keeps blaming his heart, his sugar, old age.... anything but the gluten. So a word of caution. Even if the dapsone makes you feel better you still have to be gluten free or you will damage your body in other ways.

Hope you are feeling better soon

[gfb1]

I was an in denial newbie about 1 yr ago. My doc said, nope you DONT have RA (xrays) but not sure why your blood tests were so high on sed rates, RA factor, etc. But I still had the tummy aches, joint pains, D, and overall flu feeling all the time, etc. Just menopause the doc said. Finally, I stumbled onto this site and self diagnosed a wheat allergy at minimum, especially when I cut out all wheat I felt so much better. No more joint pains, more energy, no bloating, aches. I had a biospy done (same time as a colonoscopy so why not?). They found no evidence of Celiac. Still.......I felt a whole lot better when I didnt eat wheat. So I have been trying to cut it out but would fall of the wagon maybe twice a week (and pay for it the next day or so). But it was no big deal til THE RASH. I now have my lower calves on both legs covered (and its spreading) with an almost poison oak like rash. Severely itchy, white raised puss filled blisters. In doing my online research, since I am so put off by docs (who had me convinced I had RA and wanted me on meds for 10 yrs!), I discover this rash is a symptom of Celiac disease. Questions:

1. Can you have only the rash and be a Celiac without evidence of intestinal damage?

2. What cream works or at least minimizes the itching? Cortisone does nothing.

3. If I am really, really good from now on, will the rash completely go away or should I now break down and go to a doc?

Thanks and yes, I am very humbled. I thought I could be a part time gluten-free girl.....um, no.

i REALLY hate asking stupid questions... (well... maybe not....);

but...

your signature name is 'Live4Hiking'; if you have a rash on your lower calves/legs, is it possible you walked through something??

generally oral steroids (prescribed by a doc) are effective for treating poison ivy/oak, but topical creams (especially non-prescription brands) are not strong enough to do much of anything.