Undiagnosed DH

[itchycrumpet]

hello, 

I am new to this site and I'm looking for some guidance. I've just had a really horrible experience of what i think is DH. I couldn't put clothes on for 3 days & had to spend them lying down with ice packs of my bum to numb the itching. I've never experienced anything like it. The rash I had matches all the descriptions (unbearably itchy, mainly on my buttocks, up my back, fore arms & neck, symmetrical, fades to purple dots) At the time i thought this was hives, took antihistamines and as we're in the middle of covid just had a phone chat with my doctor. It occurred at the same time as i found blood in my stool & therefore i cut gluten out of my diet as i already know that my body has trouble digesting it. 

The rash took about two weeks to dissipate completely - at the time i didn't realise this could be related to gluten but then every time i ate something with gluten in - which was minimal, i started coming out in a small itchy rash - no where near the original outbreak but in the same style & locations. 

One thing I'm confused about is that i've read that DH sticks around for months/years & can be hard to get rid of? is it possible that my rash was in fact DH if i got rid of it so quickly?

I do have a lot of the other celiac symptoms as well though have not be diagnosed (constipation, bloating, fatigue, foggy head, aniexty & depression) i have had full blood tests, minus gluten as the doctor forgot to request this?!?. which i am furious at. And stool samples taken and everything has come back normal. My doctor seams to think that i have a pretty high chance of having celiac but i am reluctant to start eating gluten again to get the tests done, every meal for 6 weeks?? I really, really don't want to have to go through that again. As far as i understand if you have DH then you have definitely have Celiac? ?

Two more questions - if you have celiac and cut out gluten does your reaction to it, if you accidentally eat some, get worse over time?

I live in a shared house, if i use the same toaster/knife/board as my flat mates is this enough gluten to be damaging my guts? I have been doing so for the past couple of weeks and haven't had any DH but unsure how strict i need to be? 

Sorry for so many question - just trying to get my head around all this. would appreciate any help. 

 

 

 

 

[jas3734]

10 hours ago, itchycrumpet said:

hello, 

The rash took about two weeks to dissipate completely - at the time i didn't realise this could be related to gluten but then every time i ate something with gluten in - which was minimal, i started coming out in a small itchy rash - no where near the original outbreak but in the same style & locations. 

One thing I'm confused about is that i've read that DH sticks around for months/years & can be hard to get rid of? is it possible that my rash was in fact DH if i got rid of it so quickly?

 

I too am undiagnosed with DH.  But I know that is what it is.  I went to so many doctors about this rash and they just kept prescribing steroid cream and all ignored me when I told them I thought it was related to something I was eating.  I went to an acupuncturist at the recommendation of a friend and she immediately told me that the rash was coming from the inside out and not a contact type rash.  She told me to do an elimination diet and that's when I realized it was gluten.

At this point the rash was pretty bad as I had been living with it for about a year.  If I recall correctly, after eliminating gluten the rash took about 3 weeks to dissipate.  Now that we are in this pandemic I ordered something for delivery and didn't realize it had pieces of imitation krab in it (even though I listed a gluten allergy).  About 5 days after eating it, the rash came back.  I am now 2 weeks into this rash with new outbreaks being discovered daily.  I usually take about 3 painful weeks for it to resolve itself.  But I've never had a flare that wasn't related to eating gluten.

I consider myself fortunate that as long as I am gluten free I am rash free so you may be in the same boat as me.  I have been living with this for 7 years now and the flare ups are rare.  But watch out for those accidental gluten ingestions!  I have been unable to find any doctor's in my area that know anything about this which is why I haven't been formally diagnosed.  Additionally, from what I understand, you must be actively eating gluten for the tests to be positive.  No thanks!  Dapsone is said to help the rash pretty quickly, but that has some pretty wicked side effects from what I understand.  Your doctor may be willing to prescribe this as you said she/he is pretty confident that you have it.  It might be worth asking.

As for your question about if you accidentally eat some does the rash get worse over time.... for me, I have accidentally eaten small amounts of gluten with no side effects at all.  But I am definitely feeling it right now after accidentally eating that krab!

My daughter can and does eat gluten and we try to clean the counter really well but we use the same toaster with no issues... but I am sure everyone has different reactions so you should get your own toaster and clean the counters often to be safe.  At least this pandemic has taught us ALL to be thorough cleaners!

From what I also understand is just because you have DH you don't necessarily have Celiac and vice versa.  I had some bleeding way back when but I don't have any intestinal symptoms now.  Just the nasty and painful rash.

Good luck with everything and post back with updates!

Jodi

 

[cyclinglady]

Please read through the DH section of the forum for tips.  
 

Know that you should probably not share a toaster.  Buy some toaster bags on Amazon.  That is what I use when traveling and I have to share a toaster.  
 

If you have DH, you have celiac disease.  Often the small intestinal damage is mild, but it exists.  Because it is in the skin, it can take longer for antibodies to subside, but the rash can heal fast too.  It depends on you and your immune system.   Know too that celiac disease is systemic.  It typically affects the brain (called gluten ataxia), the GI tract and skin (DH).  Symptoms or areas of the body can be different for anyone with celiac disease.  It is autoimmune.  You can have more than one autoimmune disorder develop too.  
 

Look for posts from SquirmingItch, Ravenwoodglass or Apprehension Engineer.  These members have the diet down and have DH.  Severe cases.  
 

Since testing seems out of the question for now (I do not blame you), ask for you iron stores (ferritin) to be checked.  Anemia was personally my only symptom, yet my GI tract was pretty damaged.  If you get a huge new rash, ask a dermatologist for a specific skin biopsy (taken adjacent to the rash).  If positive, you have DH/celiac disease.  Just another way to get a diagnosis.  Again, all testing requires you to be on gluten, but a little bit can really set of the rash.  

 

 

[Awol cast iron stomach]

38 minutes ago, cyclinglady said:

SquirmingItch, Ravenwoodglass 

I found their posts helpful. 

[itchycrumpet]

On 7/3/2020 at 1:56 AM, jas3734 said:

I too am undiagnosed with DH.  But I know that is what it is.  I went to so many doctors about this rash and they just kept prescribing steroid cream and all ignored me when I told them I thought it was related to something I was eating.  I went to an acupuncturist at the recommendation of a friend and she immediately told me that the rash was coming from the inside out and not a contact type rash.  She told me to do an elimination diet and that's when I realized it was gluten.

At this point the rash was pretty bad as I had been living with it for about a year.  If I recall correctly, after eliminating gluten the rash took about 3 weeks to dissipate.  Now that we are in this pandemic I ordered something for delivery and didn't realize it had pieces of imitation krab in it (even though I listed a gluten allergy).  About 5 days after eating it, the rash came back.  I am now 2 weeks into this rash with new outbreaks being discovered daily.  I usually take about 3 painful weeks for it to resolve itself.  But I've never had a flare that wasn't related to eating gluten.

I consider myself fortunate that as long as I am gluten free I am rash free so you may be in the same boat as me.  I have been living with this for 7 years now and the flare ups are rare.  But watch out for those accidental gluten ingestions!  I have been unable to find any doctor's in my area that know anything about this which is why I haven't been formally diagnosed.  Additionally, from what I understand, you must be actively eating gluten for the tests to be positive.  No thanks!  Dapsone is said to help the rash pretty quickly, but that has some pretty wicked side effects from what I understand.  Your doctor may be willing to prescribe this as you said she/he is pretty confident that you have it.  It might be worth asking.

As for your question about if you accidentally eat some does the rash get worse over time.... for me, I have accidentally eaten small amounts of gluten with no side effects at all.  But I am definitely feeling it right now after accidentally eating that krab!

My daughter can and does eat gluten and we try to clean the counter really well but we use the same toaster with no issues... but I am sure everyone has different reactions so you should get your own toaster and clean the counters often to be safe.  At least this pandemic has taught us ALL to be thorough cleaners!

From what I also understand is just because you have DH you don't necessarily have Celiac and vice versa.  I had some bleeding way back when but I don't have any intestinal symptoms now.  Just the nasty and painful rash.

Good luck with everything and post back with updates!

Jodi

 

thank you for sharing and the support jodi

On 7/3/2020 at 5:57 PM, Awol cast iron stomach said:

I found their posts helpful. 

will look them up - thanks 

[itchycrumpet]

On 7/3/2020 at 5:16 PM, cyclinglady said:

Please read through the DH section of the forum for tips.  
 

Know that you should probably not share a toaster.  Buy some toaster bags on Amazon.  That is what I use when traveling and I have to share a toaster.  
 

If you have DH, you have celiac disease.  Often the small intestinal damage is mild, but it exists.  Because it is in the skin, it can take longer for antibodies to subside, but the rash can heal fast too.  It depends on you and your immune system.   Know too that celiac disease is systemic.  It typically affects the brain (called gluten ataxia), the GI tract and skin (DH).  Symptoms or areas of the body can be different for anyone with celiac disease.  It is autoimmune.  You can have more than one autoimmune disorder develop too.  
 

Look for posts from SquirmingItch, Ravenwoodglass or Apprehension Engineer.  These members have the diet down and have DH.  Severe cases.  
 

Since testing seems out of the question for now (I do not blame you), ask for you iron stores (ferritin) to be checked.  Anemia was personally my only symptom, yet my GI tract was pretty damaged.  If you get a huge new rash, ask a dermatologist for a specific skin biopsy (taken adjacent to the rash).  If positive, you have DH/celiac disease.  Just another way to get a diagnosis.  Again, all testing requires you to be on gluten, but a little bit can really set of the rash.  

 

 

thank you for your response - yes will look those suggestion up. 

do you mean that i could also develop gluten ataxia if i'm not careful about ingesting gluten? Obviously I'm going to be careful- but are you saying that if you suffer from DH  you are susceptible to gluten ataxia as well?

Steering well clear of toasters and off to buy separate kitchen equipment now 

[cyclinglady]

7 hours ago, itchycrumpet said:

thank you for your response - yes will look those suggestion up. 

do you mean that i could also develop gluten ataxia if i'm not careful about ingesting gluten? Obviously I'm going to be careful- but are you saying that if you suffer from DH  you are susceptible to gluten ataxia as well?

Steering well clear of toasters and off to buy separate kitchen equipment now 

Yes, you can develop ataxia if your celiac disease is untreated.  It is also possible that active celiac disease will cause additional autoimmune disorders.  I developed my third autoimmune after a gluten exposure.  Not fun.  And we will not even talk about cancer.  I am sure your doctor let you know about this risk though rare.  

celiac disease is a serious illness.  Though sadly, gluten free eaters are ridiculed by so many and are not taken seriously.  No one would make fun of someone who has MS or lupus.