DH diagnosis & treatment

[diet.edit]

Hi Guys - new here so apologies in advance if my forum etiquette is off.

I am undiagnosed but suspected coeliac - in fact my blood test was negative when I was tested 4 years ago but nobody told me you had to be eating gluten at the time - so was diagnosed with IBS & Chronic Fatigue Syndrome.

Since studying nutrition I decided to commit to a gluten-free diet and both IBS (bloating, constipation, cramps) and CFS (fatigue, headaches, vertigo, brain fog, muscle weakness) symptoms have since improved.

I challenged with gluten in mid February & all symptoms returned, a long with a new one which matches the description of Dermatitis Herpetiformis - an intensely itchy rash that started on my stomach & has since spread to breasts, back, armpits and a little on inner elbow & back of knees too. I resumed gluten-free immediately after that one meal, and within a week or so the IBS & CFS symptoms had improved but 6 weeks on the rash remains.

I have a Dermatology referral appointment in June (!) but wanted to ask whether they will be able to confirm DH without a biopsy? My understanding from research is that I need to eat gluten for 6 weeks beforehand to produce the antibodies, but I don't feel able to return to eating gluten as the symptoms significantly impacted my daily life. 

My worry that without diagnosis through biopsy they will not be able to offer drug treatment for the rash. I have no problem avoiding gluten but have read the rash can take years to subside without treatment which sounds unbearable!

Any advice or shared experience very welcome.

Thanks, Ella

[diet.edit]

Sorry for spelling - I'm from the UK 🙃

[Scott Adams]

Welcome to the forum! I hope our American spellchecker fixed your English for you 😅

To confirm DH they usually do a skin biopsy, but since you’ve been gluten-free for so long it is possible that the test could end up false negative. It sounds like you already know that gluten is the cause of most of your symptoms, so at the very least you have gluten sensitivity, but you possibly may also have celiac disease. The only way to know for sure would be a six week gluten challenge followed by a blood test and intestinal biopsy.

DH is tricky and outbreaks can last for weeks, so you really have to ask yourself whether or not you want to go through all of this and potentially be really uncomfortable for months. Perhaps it might be easier to just go gluten free until all of your symptoms go away again and be done with it? Also you probably need to avoid iodine rich foods like dairy and many sea foods as it can cause DH flares.

[diet.edit]

Thanks for your response Scott - really appreciate it (even if you spell coeliac wrong 😋)!

You've kinda confirmed what I was leaning towards. Regardless of the cause the treatment is the same - avoid gluten!

If the rash has cleared by the appointment in June I will definitely not risk it coming back by eating gluten. If it is still there - there is a chance they'll be able to diagnose but false negative is likely, correct?

I've read a few posts on here & it seems I'm not the only one pursuing a formal diagnosis - not sure what comfort it brings as it doesn't really change anything, I guess it would be nice to know & somehow validating...maybe because as a Brit I've been raised to "not cause a fuss" & a diagnosis would at least give me a solid reason to my restricted diet! 🥴

Thanks again & glad to be here - after talking to so many doctors to no avail I agree with another post I saw...we as a community really do seem better informed to decide for ourselves what is best for us.

Ella

[Scott Adams]

I believe that if they take the skin biopsy correct during a flare up, they may still be able to diagnose it correctly without you having to eat gluten, but I may be wrong about this. I do know that DH can only be properly diagnosed via a skin biopsy during a flare up. You're welcome...I'm glad the site has helped you and hope you stick around and let us know how things turn out, and possibly help others here.

[CMCM]

On 3/22/2021 at 8:23 AM, diet.edit said:

Hi Guys - new here so apologies in advance if my forum etiquette is off.

I am undiagnosed but suspected coeliac - in fact my blood test was negative when I was tested 4 years ago but nobody told me you had to be eating gluten at the time - so was diagnosed with IBS & Chronic Fatigue Syndrome.

Since studying nutrition I decided to commit to a gluten-free diet and both IBS (bloating, constipation, cramps) and CFS (fatigue, headaches, vertigo, brain fog, muscle weakness) symptoms have since improved.

I challenged with gluten in mid February & all symptoms returned, a long with a new one which matches the description of Dermatitis Herpetiformis - an intensely itchy rash that started on my stomach & has since spread to breasts, back, armpits and a little on inner elbow & back of knees too. I resumed gluten-free immediately after that one meal, and within a week or so the IBS & CFS symptoms had improved but 6 weeks on the rash remains.

I have a Dermatology referral appointment in June (!) but wanted to ask whether they will be able to confirm DH without a biopsy? My understanding from research is that I need to eat gluten for 6 weeks beforehand to produce the antibodies, but I don't feel able to return to eating gluten as the symptoms significantly impacted my daily life. 

My worry that without diagnosis through biopsy they will not be able to offer drug treatment for the rash. I have no problem avoiding gluten but have read the rash can take years to subside without treatment which sounds unbearable!

Any advice or shared experience very welcome.

Thanks, Ella

My son's first evidence of Celiac disease (although we didn't know what was going on for a few years) was Dermatitis Herpetiformis.  Several dermatologists he saw for the rash never suggested celiac,and they kept prescribing very expensive creams that did relatively little for it.  He eventually self diagnosed celiac disease, never had a celiac test but did get a gene test which revealed one celiac gene and one for gluten sensitivity.  He stopped eating all gluten and the rash went away on its own.  I'm thinking it took a couple of months for it to gradually diminish and finally it disappeared, but it did go away on its own with a strict gluten-free diet and without further intervention of a clueless dermatologist.  A few years later, he found that accidental gluten exposure had shifted from DH to gastro, and at this point he doesn't get rashes but he gets extremely sick after eating a food with some sort of hidden gluten or cross contamination.

[diet.edit]

Hi Carole,

Many thanks for your reply.

Oh gosh - I need to stop putting my faith into GPs and by the sounds of it Dermatologists too! I'm always so hopeful pre-appointment that they'll be able to diagnose or better yet provide some magical solution, then leave very disappointed when they seem to know even less than I can get from the internet myself!

I am glad his symptoms cleared up eventually from gluten-free alone. I have read horror stories about DH ongoing for years & years. Hopefully that is very rare & it will clear sooner than that!

Regardless, you are right - a strict gluten-free diet, ensuring no cross-contamination, I think will be necessary.

Interesting what Scott said about the link between iodine-rich foods like dairy and many seafood causing DH flares - I wasn't aware of this.

Thanks & take care!
Ella

[JenniK]

On 3/22/2021 at 11:23 AM, diet.edit said:

Hi Guys - new here so apologies in advance if my forum etiquette is off.

I am undiagnosed but suspected coeliac - in fact my blood test was negative when I was tested 4 years ago but nobody told me you had to be eating gluten at the time - so was diagnosed with IBS & Chronic Fatigue Syndrome.

Since studying nutrition I decided to commit to a gluten-free diet and both IBS (bloating, constipation, cramps) and CFS (fatigue, headaches, vertigo, brain fog, muscle weakness) symptoms have since improved.

I challenged with gluten in mid February & all symptoms returned, a long with a new one which matches the description of Dermatitis Herpetiformis - an intensely itchy rash that started on my stomach & has since spread to breasts, back, armpits and a little on inner elbow & back of knees too. I resumed gluten-free immediately after that one meal, and within a week or so the IBS & CFS symptoms had improved but 6 weeks on the rash remains.

I have a Dermatology referral appointment in June (!) but wanted to ask whether they will be able to confirm DH without a biopsy? My understanding from research is that I need to eat gluten for 6 weeks beforehand to produce the antibodies, but I don't feel able to return to eating gluten as the symptoms significantly impacted my daily life. 

My worry that without diagnosis through biopsy they will not be able to offer drug treatment for the rash. I have no problem avoiding gluten but have read the rash can take years to subside without treatment which sounds unbearable!

Any advice or shared experience very welcome.

Thanks, Ella

Hi Ella,

This could almost be my exact story, and I am currently in the same position re: diagnosis dilemma. 
i had DH missed by a dermatologist which I will explain in next post. 
just yesterday, i finally had my first GI appointment, and I also don’t know that to do/ think.

19 years ago i was first diagnosed with IBS due to chronic diarrrhea, “stress induced”, doctors of course said. Eventually I had full body joint pain, including barely being able to open my hands every morning. Doctors, including a rheumatologist,suspected rheumatoid arthritis and expected it to get worse. Many other random symptoms, too many to mention, and all easy to attribute to something else, and yet mysterious- including having Shingles four times in two years. After the suspected RA diagnosis, but without really any guidance from anyone (No meds of any kind), i put myself on gluten-free diet. The chronic diarrhea began to get better within 2 days, eventually completely better after months (now two years gluten-free.) surprisingly over the next month or so, the arthritis completely disappeared, as did the DH rash eventually, and I began to feel normal again.

i recently did a Challenge to see if i had healed a leaky gut or IBS. (No doctor has ever mentioned celiac or any gluten connection, none has ever told me to avoid it.) all the symptoms returned with some new ones, which my doctor saw. At this point, my GP strongly suspects Celiac and sends me to GI. Well, i thought I might have to convince the GI, but after hearing about my above symptoms plus canker sores, and bumps on my back, he immediately told me, “you have Celiac, you might as well refer to yourself as celiac, and consider yourself celiac” etc.  He didn‘t think necessary to repeat my blood test or do genetic testing. (I think because of cost?) He said he would he happy to do an endoscopy and biopsy, but he doesn’t think it would change anything, and would be very expensive.  I just need to be gluten-free according to him. He told me to think about the endoscopy and call to schedule if i want to do it.

That’s all fine and good, and I appreciate his honesty and his not prescribing unnecessary tests, but i feel at a loss for what decision to make. I’m clear that i want to stay gluten-free, that my body doesn’t react well to Gluten, but don’t i need to KNOW? Is there a case for  KNOWING for sure, so that it is in my medical chart or something? Is there ever a reason why you need a formal diagnosis of Celiac in order to get another doctor to take another issue seriously?

I don’t WANT to be celiac, or have that diagnosis like a proud badge. In fact, I started the challenge to rule OUT celiac bc I thought I had healed and could go back to normal. Clearly that is not the case, but I am still lost as in Where Do I Go From Here? 
No diet advice or nutritionist, etc. Of course, GI did say that I sounded well versed on the issue, so maybe he thought I didn’t need advice? But all that has been self-taught and trial and error....

 

[JenniK]

Below find where i copied my own post from another thread on DH, which i posted this morning. What i can say in summary about healing the DH is that mine never responded to any creams, but did go away on its own pretty quickly after going gluten-free. I would say it was a matter of weeks. I think almost immediately it stopped itching and new bumps stopped forming, and all clear within a few weeks with no medication at all. 
Time will tell this time, as today is my first day back gluten-free after the challenge and i do have the DH again, but it is not yet as bad as before. I certainly hope and pray that it immediately responds to the diet change this time too. 
Good Luck

I DiD go to a “well respected” derrmatologist when i had a huge outbreak of what looks exactly like DH a few years ago. My whole back was covered for probably a year or more, no matter what i did. I actually thought i had a staph infection. My GP was concerned enough to send me to a derm, bc she thought the derm would know better than her. 
 

The derm sent the nurse in first to take info, came in with her decision made, never touch my skin anywhere on my body and was out the door in 30 seconds. She said “you have all these bumps because you scratch and rub them.” I said, “well, they were there FIRST. I wouldnt scratch or rub something (under my bra ) unless there were something THERE.” She just dismissed that, prescribed some cremeand left. Never offered to culture or biopsy, never askedabout possible food or cosmetic allergies, certainly nevermentioned celiac. The cream never did one thing to help even though i put it on like clock work for months.

After maybe another year or two, because of my chronicdiarrhea and suspected rheumatoid arthritis, i went gluten-free. Guess what happened? The bumps that had beenthere for years disappeared (except that I am still scarred from them). Stayed completely gone for 2 years that I was gluten-free until I recently did a gluten challenge. Now hascome back but is not full blown yet. I showed the GI yesterday, who agrees that is looks like DH, even though he said that a dermatologist would be more sure.

well, not the dermatologist i went to. Of all the doctors whomissed  signs over the years, the only one I feel let medown is that dermatologist. She could have saved me YEARS of struggle and health issues if only she had notbeen so arrogant and had known her own specialty. 

 

 

[diet.edit]

43 minutes ago, JenniK said:

Below find where i copied my own post from another thread on DH, which i posted this morning. What i can say in summary about healing the DH is that mine never responded to any creams, but did go away on its own pretty quickly after going gluten-free. I would say it was a matter of weeks. I think almost immediately it stopped itching and new bumps stopped forming, and all clear within a few weeks with no medication at all. 
Time will tell this time, as today is my first day back gluten-free after the challenge and i do have the DH again, but it is not yet as bad as before. I certainly hope and pray that it immediately responds to the diet change this time too. 
Good Luck

I DiD go to a “well respected” derrmatologist when i had a huge outbreak of what looks exactly like DH a few years ago. My whole back was covered for probably a year or more, no matter what i did. I actually thought i had a staph infection. My GP was concerned enough to send me to a derm, bc she thought the derm would know better than her. 
 

The derm sent the nurse in first to take info, came in with her decision made, never touch my skin anywhere on my body and was out the door in 30 seconds. She said “you have all these bumps because you scratch and rub them.” I said, “well, they were there FIRST. I wouldnt scratch or rub something (under my bra ) unless there were something THERE.” She just dismissed that, prescribed some cremeand left. Never offered to culture or biopsy, never askedabout possible food or cosmetic allergies, certainly nevermentioned celiac. The cream never did one thing to help even though i put it on like clock work for months.

After maybe another year or two, because of my chronicdiarrhea and suspected rheumatoid arthritis, i went gluten-free. Guess what happened? The bumps that had beenthere for years disappeared (except that I am still scarred from them). Stayed completely gone for 2 years that I was gluten-free until I recently did a gluten challenge. Now hascome back but is not full blown yet. I showed the GI yesterday, who agrees that is looks like DH, even though he said that a dermatologist would be more sure.

well, not the dermatologist i went to. Of all the doctors whomissed  signs over the years, the only one I feel let medown is that dermatologist. She could have saved me YEARS of struggle and health issues if only she had notbeen so arrogant and had known her own specialty. 

 

 

Oh wow JenniK - what a time you've had with it!

I'm sorry to hear it's been so difficult, but also so pleased gluten-free has been of benefit & that you have found what does work for you despite the horrible advice the so-called professionals have given you!

This part particularly struck me:

"sends me to GI. Well, i thought I might have to convince the GI, but after hearing about my above symptoms plus canker sores, and bumps on my back, he immediately told me, “you have Celiac, you might as well refer to yourself as celiac, and consider yourself celiac” etc."

But also fully agree with you that this isn't exactly an answer! I think I'm leaning towards going to the appointment, regardless of the rash being there and without reintroducing gluten, in the hope that the Dermatologist listens to my history & from the pictures (or the rash if it's not gone by then...) can confirm.

Did the GI not add it to your notes, even though they were sure that's what it sounded like?

I can't believe how many have had such a tough ride with this - I think I'm boring my friends & family to tears going on about it but the not knowing FOR SURE is the worst! Same as you it's not that I WANT it to be celiac disease - obviously! - but there is something affirming in knowing.

Best of luck with the next part of your journey, whatever you decide!

[JenniK]

13 minutes ago, diet.edit said:

Oh wow JenniK - what a time you've had with it!

I'm sorry to hear it's been so difficult, but also so pleased gluten-free has been of benefit & that you have found what does work for you despite the horrible advice the so-called professionals have given you!

This part particularly struck me:

"sends me to GI. Well, i thought I might have to convince the GI, but after hearing about my above symptoms plus canker sores, and bumps on my back, he immediately told me, “you have Celiac, you might as well refer to yourself as celiac, and consider yourself celiac” etc."

But also fully agree with you that this isn't exactly an answer! I think I'm leaning towards going to the appointment, regardless of the rash being there and without reintroducing gluten, in the hope that the Dermatologist listens to my history & from the pictures (or the rash if it's not gone by then...) can confirm.

Did the GI not add it to your notes, even though they were sure that's what it sounded like?

I can't believe how many have had such a tough ride with this - I think I'm boring my friends & family to tears going on about it but the not knowing FOR SURE is the worst! Same as you it's not that I WANT it to be celiac disease - obviously! - but there is something affirming in knowing.

Best of luck with the next part of your journey, whatever you decide!

He did add it to my notes, as suspected. When i asked about needing the biopsy to put it in my chart, he said he would write in there Suspected Celiac. 
I think after so long of trying to figure this out for myself and ‘guessing’, fitting together the puzzle pieces, i need to tell myself that an expert’s guess is good enough even if i didn’t go through all the additional testing. I feel like he would have told me if he thought I needed to confirm it for some reason, but it still leaves you and I in a weird place while we come to terms with the diagnosis.

 

i can’t remember how long you’ve been gluten free, but I hope and pray that your symptoms all start clearing up quickly. If you are like me, you may discover that things you didN’t even know were related actually improve and disappear too! It’s like, ‘Oh, wait! I don’t have that anymore, do I? Hallelujah!”

[diet.edit]

1 hour ago, JenniK said:

He did add it to my notes, as suspected. When i asked about needing the biopsy to put it in my chart, he said he would write in there Suspected Celiac. 
I think after so long of trying to figure this out for myself and ‘guessing’, fitting together the puzzle pieces, i need to tell myself that an expert’s guess is good enough even if i didn’t go through all the additional testing. I feel like he would have told me if he thought I needed to confirm it for some reason, but it still leaves you and I in a weird place while we come to terms with the diagnosis.

 

i can’t remember how long you’ve been gluten free, but I hope and pray that your symptoms all start clearing up quickly. If you are like me, you may discover that things you didN’t even know were related actually improve and disappear too! It’s like, ‘Oh, wait! I don’t have that anymore, do I? Hallelujah!”

That makes sense. At this point I think I'll be happy with that!

I'm about 6 months gluten free now - with one gluten challenge 2 months ago that resulted in *SUSPECTED* (there's that word again!) DH. I do hope you're right! 🤞

Pleased to be able to share experiences with others that understand.