Itch but no rash

[Gael]

Hello, I am wondering if I have DH. My dad and multiple other family members (aunts uncles cousins etc) have celiacs disease. They are all biopsy confirmed. They all experience digestive issues. I don’t have any digestive problems but for the last two months my skin has been very itchy. It started with my scalp but now it seems like any area of my body can itch. Sometimes these little red bumps show up and other times there is no rash at all. For example, I have never had a rash on my scalp but it’s the most itchy. It’s so bad I wake up in the middle of the night. The blood test came back negative. I am seeing a dermatologist on Friday. I stopped gluten a week ago because I was so desperate for some improvement but so far I am still very itchy.  Does anyone else just get itchy and no rash?

[trents]

Gael, welcome to the forum!

Do you know what blood test you had done that came back negative?

Realize that if start a gluten free diet before testing the testing may be invalidated, whether for DH or for gut manifested celiac disease.

[Gael]

  On 11/16/2021 at 12:39 AM, trents said:

Gael, welcome to the forum!

Do you know what blood test you had done that came back negative?

Realize that if start a gluten free diet before testing the testing may be invalidated, whether for DH or for gut manifested celiac disease.

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Thanks! It was the ttG test. I realize that might make it harder for diagnosis but in Canada there are long waits to see specialists and I was so desperate to stop itching. I had the ttg test before stopping gluten

[trents]

DH has a very specific appearance. I think it produces tiny blisters. I'm sure there are pics on the internet for it. I'm wondering if you have an allergy to something in your diet or your environment instead of DH or celiac disease.

[Gael]

  On 11/16/2021 at 1:52 AM, trents said:

DH has a very specific appearance. I think it produces tiny blisters. I'm sure there are pics on the internet for it. I'm wondering if you have an allergy to something in your diet or your environment instead of DH or celiac disease.

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I am not sure. My blood work shows that I am healthy. I am finally seeing a dermatologist on Friday. I have tried changing all my soaps and lotions to fragrance free and it didn’t make a difference. It could be something else in my diet. I just don’t know what else it could be aside from gluten. I just thought it was DH since I have such a strong family link.  I am very very itchy but sometimes there are small bumps and sometimes there isn’t. 

[trents]

Have you tried taking antihistamines for the rash and the itch? I think that might be a smart diagnostic step. If the antihistamine helps then that would point to allergies. DH is not an allergy. It is an autoimmune disorder.

[Gael]

  On 11/16/2021 at 3:06 AM, trents said:

Have you tried taking antihistamines for the rash and the itch? I think that might be a smart diagnostic step. If the antihistamine helps then that would point to allergies. DH is not an allergy. It is an autoimmune disorder.

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Yes, I have tried antihistamines and it didn’t help at all. Also was prescribed hydrocortisone cream and likewise it didn’t make a difference. Still very itchy and getting more rashes today (even though I have been gluten free for over a week). Rash today showed up on both sides of hips. Small red bumps, itchy. But still my scalp is itchy and no rash there. So it’s very confusing to me!

[trents]

I would consider asking your physician to order a course of prednisone for you. That drug is an immunosuppressant and anti-inflammatory agent so that would point to some kind of autoimmune issue if it helped the rash.

[Scott Adams]

Given your family connection with celiac disease, and the fact that your dad has it, this gives you ~44% chance of also having it. I think you're on the right track, and would ask your dermatologist to do a skin biopsy that looks for DH.

[Gael]

  On 11/16/2021 at 5:02 AM, trents said:

I would consider asking your physician to order a course of prednisone for you. That drug is an immunosuppressant and anti-inflammatory agent so that would point to some kind of autoimmune issue if it helped the rash.

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Thanks I will ask about that!

  On 11/16/2021 at 7:46 PM, Scott Adams said:

Given your family connection with celiac disease, and the fact that your dad has it, this gives you ~44% chance of also having it. I think you're on the right track, and would ask your dermatologist to do a skin biopsy that looks for DH.

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Thanks I will ask for that. I stopped eating gluten about 10 days ago. I see a dermatologist in Friday. I am still breaking out in new rashes. I am not sure how long gluten stays in the skin.

[chocoholic]

Hi Gael,

I was diagnosed Aug. 2019 and gluten-free since. I've had an itchy scalp and dandruff since I was a teenager. I think there was an improvement while on 'the pill' (another topic, and I do NOT recommend taking BCP), but that was a long time ago.

I have had undiagnosed skin issues since childhood: bouts of a rash with hives all over my body (but only a few times in my life, including 3 years ago), localized rashes, extremely dry skin, inflamed scalp, and for a few years now a lupus-like red mask on my face.

Unfortunately none of this changed since my gluten-free diet, and I've been strict. No eating out ever, no "may contain traces of gluten" products that many celiacs consider safe.

My scalp is worst after eating, especially carb-rich foods. I find washing my hair daily helps somewhat (dandruff shampoo). Earlier this year I had my scalp, ears and other areas tested for fungus. Negative. (My inner ears are so dry and itchy it sometimes bleeds, it's horrible. Have seen the derm and an otolaryngologist about that, no answers.)

Other than that, after showering, my whole body itches, regardless of season, water temperature, personal products, laundry detergent etc.

Since I have a thyroid condition, this may be partly to blame. Perhaps also nutrition. 

I hope you'll find your answers soon. You'll probably need to do more tests to get answers. For many of us it's a long journey. 💛

 

[Jen1975]

  On 11/15/2021 at 11:44 PM, Gael said:

Hello, I am wondering if I have DH. My dad and multiple other family members (aunts uncles cousins etc) have celiacs disease. They are all biopsy confirmed. They all experience digestive issues. I don’t have any digestive problems but for the last two months my skin has been very itchy. It started with my scalp but now it seems like any area of my body can itch. Sometimes these little red bumps show up and other times there is no rash at all. For example, I have never had a rash on my scalp but it’s the most itchy. It’s so bad I wake up in the middle of the night. The blood test came back negative. I am seeing a dermatologist on Friday. I stopped gluten a week ago because I was so desperate for some improvement but so far I am still very itchy.  Does anyone else just get itchy and no rash?

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I was itchy for 5 years. I went to countless dermatologists. I did have a rash but it didn’t look like the typical DH. My skin would get so raw it was like a sunburn without the burn. I would wake myself up at night scratching my face and neck. I was diagnosed with celiac a year ago. The test always came back negative because I ate a low carb diet for the most part. They can do a simple blood test to diagnose but you have to be eating gluten for two weeks at least. My advice would be to get the celiac diagnosis first. No doc will treat you for DH if you haven’t been diagnosed with celiac. Then find a dermatologist who is willing to treat you with dapsone on a experimental basis. I have been on dapsone for 4 weeks and it has changed my life

[trents]

  On 11/17/2021 at 10:36 AM, Jen1975 said:

I was itchy for 5 years. I went to countless dermatologists. I did have a rash but it didn’t look like the typical DH. My skin would get so raw it was like a sunburn without the burn. I would wake myself up at night scratching my face and neck. I was diagnosed with celiac a year ago. The test always came back negative because I ate a low carb diet for the most part. They can do a simple blood test to diagnose but you have to be eating gluten for two weeks at least. My advice would be to get the celiac diagnosis first. No doc will treat you for DH if you haven’t been diagnosed with celiac. Then find a dermatologist who is willing to treat you with dapsone on a experimental basis. I have been on dapsone for 4 weeks and it has changed my life

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Correction here. Previous to the blood antibody test you should be daily eating an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks pretest. That is the guideline. Previous to the endoscopy/biopsy that same daily amount of gluten is prescribed for two weeks previous to the test.

[Gael]

  On 11/17/2021 at 9:40 AM, chocoholic said:

Hi Gael,

I was diagnosed Aug. 2019 and gluten-free since. I've had an itchy scalp and dandruff since I was a teenager. I think there was an improvement while on 'the pill' (another topic, and I do NOT recommend taking BCP), but that was a long time ago.

I have had undiagnosed skin issues since childhood: bouts of a rash with hives all over my body (but only a few times in my life, including 3 years ago), localized rashes, extremely dry skin, inflamed scalp, and for a few years now a lupus-like red mask on my face.

Unfortunately none of this changed since my gluten-free diet, and I've been strict. No eating out ever, no "may contain traces of gluten" products that many celiacs consider safe.

My scalp is worst after eating, especially carb-rich foods. I find washing my hair daily helps somewhat (dandruff shampoo). Earlier this year I had my scalp, ears and other areas tested for fungus. Negative. (My inner ears are so dry and itchy it sometimes bleeds, it's horrible. Have seen the derm and an otolaryngologist about that, no answers.)

Other than that, after showering, my whole body itches, regardless of season, water temperature, personal products, laundry detergent etc.

Since I have a thyroid condition, this may be partly to blame. Perhaps also nutrition. 

I hope you'll find your answers soon. You'll probably need to do more tests to get answers. For many of us it's a long journey. 💛

 

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Wow! That’s quite the journey for you. I have never had skin issues in the past so it’s so new to me. Thank you for sharing your experiences! 

  On 11/17/2021 at 10:36 AM, Jen1975 said:

I was itchy for 5 years. I went to countless dermatologists. I did have a rash but it didn’t look like the typical DH. My skin would get so raw it was like a sunburn without the burn. I would wake myself up at night scratching my face and neck. I was diagnosed with celiac a year ago. The test always came back negative because I ate a low carb diet for the most part. They can do a simple blood test to diagnose but you have to be eating gluten for two weeks at least. My advice would be to get the celiac diagnosis first. No doc will treat you for DH if you haven’t been diagnosed with celiac. Then find a dermatologist who is willing to treat you with dapsone on a experimental basis. I have been on dapsone for 4 weeks and it has changed my life

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Thanks for sharing your experiences! I am very interested in learning more about dapsone.

[Scott Adams]

From everything I've read, dapsone will work, however it does carry with it some pretty bad side effects. One of our site's authors is an RN, has DH, and has written extensively about dapsone, so you may want to go through some of her content using this search:

https://www.celiac.com/search/?&q=dapsone&author=Yvonne (Vonnie) Mostat%2C RN&search_and_or=and

[Jen1975]

  On 11/17/2021 at 2:41 PM, trents said:

Correction here. Previous to the blood antibody test you should be daily eating an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks pretest. That is the guideline. Previous to the endoscopy/biopsy that same daily amount of gluten is prescribed for two weeks previous to the test.

Expand Quote  

My gastroenterologist at John’s Hopkins told me two weeks was sufficient for the endoscopy and colonoscopy. 6-8 weeks would be extreme and cause unnecessary suffering.  
I would also suggest seeing an allergist to test for other food allergies. I am also allergic to casein (dairy), eggs and corn, among other foods. Other allergies might be what is causing the itching.

[Jen1975]

  On 11/17/2021 at 2:56 PM, Gael said:

Wow! That’s quite the journey for you. I have never had skin issues in the past so it’s so new to me. Thank you for sharing your experiences! 

Thanks for sharing your experiences! I am very interested in learning more about dapsone.

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Dapsone can cause liver and kidney damage and will likely decrease your red blood cell count. I have to have weekly blood tests for this first month and then twice  monthly next month. They have to make sure your body can handle it. After the second month I can go to every couple of months with the blood work. Just make sure your dermatologist checks on your CBC and liver and kidneys while you are taking it. It hasn’t made the rash go away but the insane itching is gone. 

[trents]

  On 11/18/2021 at 1:32 AM, Jen1975 said:

My gastroenterologist at John’s Hopkins told me two weeks was sufficient for the endoscopy and colonoscopy. 6-8 weeks would be extreme and cause unnecessary suffering.  
I would also suggest seeing an allergist to test for other food allergies. I am also allergic to casein (dairy), eggs and corn, among other foods. Other allergies might be what is causing the itching.

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That's exactly what I said. Please go back and read my post again.

[Gael]

  On 11/17/2021 at 7:12 PM, Scott Adams said:

From everything I've read, dapsone will work, however it does carry with it some pretty bad side effects. One of our site's authors is an RN, has DH, and has written extensively about dapsone, so you may want to go through some of her content using this search:

https://www.celiac.com/search/?&q=dapsone&author=Yvonne (Vonnie) Mostat%2C RN&search_and_or=and

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Thank you! I will definitely read this

  On 11/18/2021 at 1:32 AM, Jen1975 said:

My gastroenterologist at John’s Hopkins told me two weeks was sufficient for the endoscopy and colonoscopy. 6-8 weeks would be extreme and cause unnecessary suffering.  
I would also suggest seeing an allergist to test for other food allergies. I am also allergic to casein (dairy), eggs and corn, among other foods. Other allergies might be what is causing the itching.

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Did your other allergies (dairy, egg etc) show up later in life? I am 35 and as far as I know I have never had an allergic reaction to any foods before!

[Gael]

  On 11/18/2021 at 1:47 AM, Jen1975 said:

Dapsone can cause liver and kidney damage and will likely decrease your red blood cell count. I have to have weekly blood tests for this first month and then twice  monthly next month. They have to make sure your body can handle it. After the second month I can go to every couple of months with the blood work. Just make sure your dermatologist checks on your CBC and liver and kidneys while you are taking it. It hasn’t made the rash go away but the insane itching is gone. 

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Good to know! I don’t care about the rashes, I just want the insane itching to stop!

[Scott Adams]

The fastest and best way to stop the itch and rashes, if they are caused by gluten sensitivity, would be to switch to a 100% gluten-free diet. Obviously you're planning a biopsy so need to wait on that, but what if your biopsy is negative? You could still have DH or non-celiac gluten sensitivity and need to go gluten-free.

[Gael]

  On 11/18/2021 at 6:13 PM, Scott Adams said:

The fastest and best way to stop the itch and rashes, if they are caused by gluten sensitivity, would be to switch to a 100% gluten-free diet. Obviously you're planning a biopsy so need to wait on that, but what if your biopsy is negative? You could still have DH or non-celiac gluten sensitivity and need to go gluten-free.

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Thanks I’ll ask the doctor about it. I have been 100% gluten free 11 days now and I am still extremely itchy with more rashes breaking out over my body. Still itchy on my scalp but no rash there but now it seems everywhere that is itchy a rash shows up. I see a dermatologist tomorrow so if he tells me to go back on gluten to do a skin biopsy I will. I am about 4 weeks pregnant so I know I can’t do an endoscopy right now. The itch definitely predates my pregnancy though because I have been itchy for about 2 months but the rashes have gotten worse since starting gluten free. So I am pretty confused!

[Scott Adams]

Ok, so just to clarify, you can't do any further testing for celiac disease unless you're eating gluten daily. You may still be able to get a skin biopsy for DH, however, I do believe that going gluten-free for so long may also affect those test results as well, and you could get false-negative results on any of these tests because you are now gluten-free. That said, if your symptoms go away, then you likely have your answer anyway, right? 

Keep in mind that even tiny amounts of gluten contamination could flare up your DH for weeks, so be sure your diet is GF, and eating out is the biggest source of contamination.

[Gael]

  On 11/19/2021 at 6:48 PM, Scott Adams said:

Ok, so just to clarify, you can't do any further testing for celiac disease unless you're eating gluten daily. You may still be able to get a skin biopsy for DH, however, I do believe that going gluten-free for so long may also affect those test results as well, and you could get false-negative results on any of these tests because you are now gluten-free. That said, if your symptoms go away, then you likely have your answer anyway, right? 

Keep in mind that even tiny amounts of gluten contamination could flare up your DH for weeks, so be sure your diet is gluten-free, and eating out is the biggest source of contamination.

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Thanks! I think I have been fairly careful with cross contamination. I use a toaster that is totally gluten free and only use clean cooking utensils. I am not eating out at this time. Still itchy and still new rashes are breaking out. Just waiting on skin biopsy result now! 

[Jen1975]

I would also see an allergist to determine if there is something else you are eating that is causing the rash and itching. The testing should be safe while you are pregnant. They would just do blood tests and maybe some skin testing.