Is An Official Diagnosis of DH Necessary?

[ilovermont]

I apologize in advance for so much detail, but I hope it will explain why I feel confident in my self-diagnosis of dermatitis herpetiformis.  But my ultimate question is this:  is an official diagnosis necessary, and if so, why, i.e., what would be gained?

Around 2010 I began to have serious scalp issues with sore spots that would often bleed when scratched and tenderness that felt like severe bruising.  I spent years searching the Internet for possible causes, with no luck.

Oddly, around that same time, my ears ceased producing ear wax and I also developed tinnitus.  Testing by an audiologist revealed a hearing loss, and I was told I there is no cure for tinnitus.  I also learned it is OK to use a swab to put cortisone in the ear canals to lessen the intense itching.

In early 2018 out of the blue I developed blisters on several fingers and the backs of my hands that were extremely itchy.  Over the next 18 months the blisters spread to much of my body and my scalp issues escalated.  During that time, I was treated for eczema and given a variety of creams and ointments, none of which stopped the development of more blisters.  I was also tested for nearly every possible food and chemical allergy, the results of which were all negative.  And during those 18 months, various intestinal issues became more pronounced, but a CT Scan of my abdomen revealed no abnormalities.  

In an effort to learn what might be causing the GI problems, I went back to the Internet, which led me to celiac disease and eventually DH.  In mid-2019 I went on a strict gluten-free diet and have maintained it without interruption for over 2 years, except for cases of cross-contamination.  As a result, my scalp has cleared up (but it took about 18 months), my ears now produce a little earwax, and blisters appear only when I get cross-contaminated.  Unfortunately, I still have a few GI issues, but they have definitely improved.

Given that a gluten-free diet is the single solution for celiac/DH, and my gluten-free diet has resolved all of my DH issues and minimized my GI issues, I see no benefit in getting a formal diagnosis.  However, I’ve been wrong about other things in my life, so I would appreciate your input on whether an official diagnosis of DH (specifically) is necessary, and if so, why?

[trents]

I can't disagree with your reasoning except that having an official diagnosis of celiac disease and DH might give you more leverage in medical care situations related to the effects of celiac disease and DH. If there is not an official diagnosis you might find resistance from many physicians in exploring issues related to your celiac disease/DH. Is there any particular reason you would not seek an official diagnosis. Is it an insurance issue?

[trents]

Of course, getting an official diagnosis would require you to go back on regular amounts of gluten for 2 (intestinal biopsy) to 8 (antibody test) and that would be a huge deterrent. Although in the case of DH they might be able to do a dermal biopsy during an outbreak and prove that you have DH for which celiac disease is the only cause. Not sure how that works with DH.

Edited October 8, 2021 by trents

[ilovermont]

35 minutes ago, trents said:

I can't disagree with your reasoning except that having an official diagnosis of celiac disease and DH might give you more leverage in medical care situations related to the effects of celiac disease and DH. If there is not an official diagnosis you might find resistance from many physicians in exploring issues related to your celiac disease/DH. Is there any particular reason you would not seek an official diagnosis. Is it an insurance issue?

No, insurance is not an issue.  And you make a good point about other physicians not accepting a self-diagnosis, which I totally understand.

[ilovermont]

23 minutes ago, trents said:

Of course, getting an official diagnosis would require you to go back on regular amounts of gluten for 2 (intestinal biopsy) to 8 (antibody test) and that would be a huge deterrent. Although in the case of DH they might be able to do a dermal biopsy during an outbreak and prove that you have DH for which celiac disease is the only cause. Not sure how that works with DH.

It's going back to eating gluten that has made me delay getting a formal diagnosis.  As you may well know, the DH blisters are very difficult to live with.  I've read that a dermatologist can diagnose DH by doing a "punch test", after you've been eating gluten for some period of time.  The time ranges from 8-12 weeks, and I'm just not sure it's worth that literal pain.  You've given me something to think about and perhaps consider it.  Thank you.

[trents]

Yes, I'm not sure it's worth it either. I don't suffer from DH but from reading the stories of those who do it seems to be misery. I can tell you that after years of living gluten free I no longer have any tolerance for it. If I get a significant gluten exposure I get violently ill. It would probably put me in the grave if I had to go back on gluten to get tested.

[Scott Adams]

Given how horrible DH symptoms are, and how sure you are that it's what you have, as it goes away when you don't eat gluten, I don't see any reason to put yourself through what could end up being months of misery, just to get a formal diagnosis. Further, a formal diagnosis will also increase life, and possibly health, insurance rates, and may make policies harder to get. So if you're sure, just stay gluten-free.

[Wheatwacked]

9 hours ago, ilovermont said:

OK to use a swab to put cortisone in the ear canals to lessen the intense itching.

I use Witch Hazel for my ears, although I do take 5 mg prednisolone daily for pain (fibromyalsia?)  My lifelong dandruff cleared with GFD. Tinnitus is a b%$@#.

 

9 hours ago, ilovermont said:

various intestinal issues became more pronounced

Keep a food log, you might find patterns.

[ilovermont]

17 hours ago, Scott Adams said:

Given how horrible DH symptoms are, and how sure you are that it's what you have, as it goes away when you don't eat gluten, I don't see any reason to put yourself through what could end up being months of misery, just to get a formal diagnosis. Further, a formal diagnosis will also increase life, and possibly health, insurance rates, and may make policies harder to get. So if you're sure, just stay gluten-free.

As you pointed out, I also fear there could be unforeseen consequences of a diagnosis, with little benefit to obtaining one.  Thank you for your input - it's a relief to hear that I'm not out in left field on my reasoning.

[ilovermont]

10 hours ago, Wheatwacked said:

I use Witch Hazel for my ears, although I do take 5 mg prednisolone daily for pain (fibromyalsia?)  My lifelong dandruff cleared with GFD. Tinnitus is a b%$@#.

 

Keep a food log, you might find patterns.

Thanks for the tip about Witch Hazel - I'll give it a try.  And I couldn't agree more about the tinnitus!  By closely monitoring what I eat, I did discover that I needed to eliminate milk from my diet (I often had bowl of cereal for breakfast), and I've also minimized cheese and yogurt, which has helped.

[drobs]

1 hour ago, ilovermont said:

Thanks for the tip about Witch Hazel - I'll give it a try.  And I couldn't agree more about the tinnitus!  By closely monitoring what I eat, I did discover that I needed to eliminate milk from my diet (I often had bowl of cereal for breakfast), and I've also minimized cheese and yogurt, which has helped.

yikes, so happy the scalp stuff cleared up that sounds awful. it all does. it's crazy how much gluten can affect people.  and i wanted to say you don't have to give up cereal! there are so many non dairy milks! my favorite with cereal is oat milk or any nut milk is good too. I like the creamier-aspect of oat. and cereal is so fun 😋 same w cheese and yogurt,though some brands are WAY better /worse tasting than others imo. availability by location varies too of course. let me know if you want suggestions, or recipes for homemade cheeze, I've been dairy free for years. and my vote if I were you I'd not start gluten again cuz that all sounds horrible. good luck! 

[Wheatwacked]

2 hours ago, ilovermont said:

By closely monitoring what I eat, I did discover that I needed to eliminate milk from my diet

Did it work?

[ilovermont]

On 10/9/2021 at 9:02 AM, drobs said:

yikes, so happy the scalp stuff cleared up that sounds awful. it all does. it's crazy how much gluten can affect people.  and i wanted to say you don't have to give up cereal! there are so many non dairy milks! my favorite with cereal is oat milk or any nut milk is good too. I like the creamier-aspect of oat. and cereal is so fun 😋 same w cheese and yogurt,though some brands are WAY better /worse tasting than others imo. availability by location varies too of course. let me know if you want suggestions, or recipes for homemade cheeze, I've been dairy free for years. and my vote if I were you I'd not start gluten again cuz that all sounds horrible. good luck! 

After giving up cow's milk, I switched to almond milk, which lets me still enjoy my breakfast cereal.  It's good to hear you've conquered the entire daily thing - way to go!

[ilovermont]

23 hours ago, Wheatwacked said:

Did it work?

Because I used to consume so much cow's milk, switching to almond milk has noticeably lessened (but not eliminated) my GI issues.  I still eat a little cheese a couple of times a month, and have about 1/2 cup of yogurt 3-4 times a week, so I suspect I need to eliminate those in order to resolve my issues.