Pros and cons of testing to confirm dermatitis herpetiformis

[bartlettcharlie]

This is my first post. I started suspecting I have dermatitis herpetiformis last Thursday. I appreciate what I have learned on these forums already. Aside from getting mild rashes (that include papules and vesicles) from time to time concurrently on both of my knees and elbows I have had chronic inflammation on my butt, sideburn area, and chin for a while now. My rashes look relatively mild compared to most that I have seen for DH when I do a Google Images search. I rarely have diarrhea but my stools are fairly loose. Eating or drinking coffee triggers the need to defecate, so often I go about 4-6 times per day. I had extreme intestinal pain around Easter time and moderate intestinal pain and bloating from time to time. So, many symptoms could be caused by celiac but also could just be unrelated things. I have been having these symptoms for over a year, but I am mid-40s and have thought it is related to aging. As far as the rashes go, I used to dismiss the ones on elbows and knees as infection-related--I cannot explain why I never questioned why an infection-related rash would be symmetrical. Last Thursday when I first learned about DH and celiac disease, I decided I would avoid gluten until the end of the year and see what happens. Then, after reading some posts I now see many recommending getting a proper diagnosis on the front end. I accidentally had a little bread Saturday night and I started eating gluten again yesterday at lunch. So, if I am gluten intolerant this will be my farewell tour. Overall, I was gluten-free on Thursday and Friday, had a little bread on Saturday, and gluten-free on Sunday. Since Monday lunch I have had some gluten at every meal. After a few days of no gluten, my sinuses felt clearer than they ever had--I used to take Allegra every evening to deal with nasal congestion at night. My bowel movements came down to 2. I know that these observations are not a proper diagnosis.

If I get tested, I will go to a dermatologist to get a skin biopsy and serum testing. My insurance takes LabCorp so I would ask for LabCorp Test Number: 165126. (Antibodies Profile tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, and Total IgA. Test includes deamidated gliadin antibodies; endomysial antibodies; tissue transglutaminase (tTG) antibodies; total IgA.). I saved documents on how to do the skin biopsy and realize one has to avoid scratching, steroids, etc. before testing (thanks to this board).

I was a vegetarian for over twenty years (started eating meat a few years ago) and did the South Beach Diet a few times. I am in the middle of a year-long experiment on the effects of consuming no alcohol (so far my sleep and control of acid reflux has benefited greatly). What I am trying to say by this stuff is I am actually the kind of person that can (for a moderate amount of time) restrict behavior as part of an experiment.

I wish to layout the pros and cons of getting a medical diagnosis for mild dermatitis herpetiformis. I realize in severe cases one would absolutely need to have the option of a Dapsone prescription. I would not take this drug if my symptoms were not severe. From your experience, would you add any Pros and Cons to the list? From your experience, is it worth getting diagnosed?

PROS TO GETTING DIAGNOSED PROFESSIONALLY:

• need diagnosis for a Dapsone prescription if you ever need it
• it will help convince you to comply with "no gluten" for the rest of your life
• your social contacts *may* not consider your dietary restriction an annoyance or *may* have some compassion
• it may convince blood relatives with celiac disease symptoms to get tested
• doing it before giving up gluten and having to do a challenge would cause less suffering
• the relationship between gluten consumption and symptoms, and cessation and relief, do not obey a one-to-one temporal/causal relationship. Therefore, the labs will tell you in clearer form what the experience of gluten avoidance/consumption may not

CONS:

• time dealing with appointments
• cost of appointments
• potentially higher insurance premiums once a condition is found out
• tests may come back negative anyway, even if one is positive
• it's annoying to deal with doctors
• a diagnosis will just lead to gluten avoidance anyway, so why do I need to suffer through more symptoms and the issues above just to feel better?

Thanks for any feedback and for past insights I have gained on this board.

[cyclinglady]

12 hours ago, bartlettcharlie said:

This is my first post. I started suspecting I have dermatitis herpetiformis last Thursday. I appreciate what I have learned on these forums already. Aside from getting mild rashes (that include papules and vesicles) from time to time concurrently on both of my knees and elbows I have had chronic inflammation on my butt, sideburn area, and chin for a while now. My rashes look relatively mild compared to most that I have seen for DH when I do a Google Images search. I rarely have diarrhea but my stools are fairly loose. Eating or drinking coffee triggers the need to defecate, so often I go about 4-6 times per day. I had extreme intestinal pain around Easter time and moderate intestinal pain and bloating from time to time. So, many symptoms could be caused by celiac but also could just be unrelated things. I have been having these symptoms for over a year, but I am mid-40s and have thought it is related to aging. As far as the rashes go, I used to dismiss the ones on elbows and knees as infection-related--I cannot explain why I never questioned why an infection-related rash would be symmetrical. Last Thursday when I first learned about DH and celiac disease, I decided I would avoid gluten until the end of the year and see what happens. Then, after reading some posts I now see many recommending getting a proper diagnosis on the front end. I accidentally had a little bread Saturday night and I started eating gluten again yesterday at lunch. So, if I am gluten intolerant this will be my farewell tour. Overall, I was gluten-free on Thursday and Friday, had a little bread on Saturday, and gluten-free on Sunday. Since Monday lunch I have had some gluten at every meal. After a few days of no gluten, my sinuses felt clearer than they ever had--I used to take Allegra every evening to deal with nasal congestion at night. My bowel movements came down to 2. I know that these observations are not a proper diagnosis.

If I get tested, I will go to a dermatologist to get a skin biopsy and serum testing. My insurance takes LabCorp so I would ask for LabCorp Test Number: 165126. (Antibodies Profile tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, and Total IgA. Test includes deamidated gliadin antibodies; endomysial antibodies; tissue transglutaminase (tTG) antibodies; total IgA.). I saved documents on how to do the skin biopsy and realize one has to avoid scratching, steroids, etc. before testing (thanks to this board).

I was a vegetarian for over twenty years (started eating meat a few years ago) and did the South Beach Diet a few times. I am in the middle of a year-long experiment on the effects of consuming no alcohol (so far my sleep and control of acid reflux has benefited greatly). What I am trying to say by this stuff is I am actually the kind of person that can (for a moderate amount of time) restrict behavior as part of an experiment.

I wish to layout the pros and cons of getting a medical diagnosis for mild dermatitis herpetiformis. I realize in severe cases one would absolutely need to have the option of a Dapsone prescription. I would not take this drug if my symptoms were not severe. From your experience, would you add any Pros and Cons to the list? From your experience, is it worth getting diagnosed?

PROS TO GETTING DIAGNOSED PROFESSIONALLY:

• need diagnosis for a Dapsone prescription if you ever need it
• it will help convince you to comply with "no gluten" for the rest of your life
• your social contacts *may* not consider your dietary restriction an annoyance or *may* have some compassion
• it may convince blood relatives with celiac disease symptoms to get tested
• doing it before giving up gluten and having to do a challenge would cause less suffering
• the relationship between gluten consumption and symptoms, and cessation and relief, do not obey a one-to-one temporal/causal relationship. Therefore, the labs will tell you in clearer form what the experience of gluten avoidance/consumption may not

CONS:

• time dealing with appointments
• cost of appointments
• potentially higher insurance premiums once a condition is found out
• tests may come back negative anyway, even if one is positive
• it's annoying to deal with doctors
• a diagnosis will just lead to gluten avoidance anyway, so why do I need to suffer through more symptoms and the issues above just to feel better?

Thanks for any feedback and for past insights I have gained on this board.

Welcome to the forum!

Your research is impressive.  Unfortunately, only you can make the best decision for yourself.  

My comments?  With the National Health Act (aka Obama Care), I do not think you can be denied insurance.  Of course, that could all change within a few years.  Nothing in life is certain, that's for sure.

i can tell you from personal experience that I have benefited from a formal diagnosis.  But my hubby does NOT have one.  He went gluten free 15 years ago per the poor advice of two medical doctors.  He would be the first to say that I have had more support from family, friends, and medical.

i wish you well.  

[bartlettcharlie]

10 hours ago, cyclinglady said:

Welcome to the forum!

Your research is impressive.  Unfortunately, only you can make the best decision for yourself.  

My comments?  With the National Health Act (aka Obama Care), I do not think you can be denied insurance.  Of course, that could all change within a few years.  Nothing in life is certain, that's for sure.

i can tell you from personal experience that I have benefited from a formal diagnosis.  But my hubby does NOT have one.  He went gluten free 15 years ago per the poor advice of two medical doctors.  He would be the first to say that I have had more support from family, friends, and medical.

i wish you well.  

Thank you very much, cyclinglady, for taking the time to read my way-too-long post and for responding with your perspective. I appreciate that very much!

Hearing that a diagnosis has increased your support from family, friends, and the medical profession is a compelling reason to "stick it out" and get a diagnosis.

My latest feeling is that I need to just keep eating gluten to do two important things:

(1) take pictures of the dermatitis at it worst. They could be very useful to show family/doctors in the future.

(2) make sure that gluten sensitivity is the real underlying cause of the dermatitis. I should keep an open mind. I don't really care what the underlying cause is, I just want it fixed!!! So, after a bad outbreak my position to  the dermatologist should be please run X tests to confirm or rule out dermatitis herpetiformis in addition to any other tests you need to do to check for any other conditions you might expect from your experience. I would like to sort this out now instead of step by step, if possible.

It's pretty miserable eating gluten again. Either I am sensitive, my symptoms are coincidental, or I am thinking way too much about this stuff. At any rate, I see that many here have suffered much, much more so I shouldn't complain. It will all play out over the next weeks/months if I truly am gluten sensitive. And, if I have to stop eating gluten, this will be my farewell tour. 

[squirmingitch]

Hey Charlie,

Yep, the decision is totally up to you. You have enumerated the pros & cons pretty thoroughly. A couple things I want to mention about testing for dermatitis herpetiformis (we call it dh here). Oral steroids within 2 months prior will skew the biopsy results. I'm afraid you're most likely going to have to be far firmer than your very civilized nice guy approach of:

2 hours ago, bartlettcharlie said:

please run X tests to confirm or rule out dermatitis herpetiformis in addition to any other tests you need to do to check for any other conditions you might expect from your experience. I would like to sort this out now instead of step by step, if possible.

 

It would be so wonderful if we could do it that easily with dermatologists but experience has taught us that 95% of the time we have to walk in laying down the law, blunt & hard lined. Just be prepared okay?

EXCELLENT for you to take photos!!!!!

My opinion is that if you can stick it out to get a dx, then it's in your best interest all the way around. Example: Let's say you don't go for a dx but do go gluten free b/c you are convinced it's dh & down the line a year or two or 3, you begin having problems - maybe dh flaring or you get glutened or suspect you may be super sensitive or your gut is not healing well. Without a dx, you will have to try to convince the docs you go to to take your self dx seriously and they hate to do that. If you stick it out & do get an official dx, then you are good to go for any follow up testing you may need in future. Also, if you should find yourself in the hospital for whatever reason, you have the dx on your record so they don't doubt your need to be fed gluten free.

[bartlettcharlie]

1 hour ago, squirmingitch said:

Hey Charlie,

Yep, the decision is totally up to you. You have enumerated the pros & cons pretty thoroughly. A couple things I want to mention about testing for dermatitis herpetiformis (we call it dh here). Oral steroids within 2 months prior will skew the biopsy results. I'm afraid you're most likely going to have to be far firmer than your very civilized nice guy approach of:

It would be so wonderful if we could do it that easily with dermatologists but experience has taught us that 95% of the time we have to walk in laying down the law, blunt & hard lined. Just be prepared okay?

EXCELLENT for you to take photos!!!!!

My opinion is that if you can stick it out to get a dx, then it's in your best interest all the way around. Example: Let's say you don't go for a dx but do go gluten free b/c you are convinced it's dh & down the line a year or two or 3, you begin having problems - maybe dh flaring or you get glutened or suspect you may be super sensitive or your gut is not healing well. Without a dx, you will have to try to convince the docs you go to to take your self dx seriously and they hate to do that. If you stick it out & do get an official dx, then you are good to go for any follow up testing you may need in future. Also, if you should find yourself in the hospital for whatever reason, you have the dx on your record so they don't doubt your need to be fed gluten free.

Thanks for the advice, squirmingitch! I appreciate it. 

I will bring in the scientific review articles on DH that I have found and be firm like you suggested if necessary. 

Since eating gluten again after a few days off, my sinus congestion has gotten worse, my bowel movements have increased, I had mild diarrhea once, and my clearing rashes have itched more than ever. It's helpful to get a perspective that it is worth sticking it out now for being able to live with DH a lifetime (assuming that's what I have). 

There are two dermatology clinics near where I work that my insurance takes. One is affiliated with a university where I have a joint faculty appointment. I called them and asked the receptionist if they have ever treated anyone for DH. She handed me off to a nurse that had to write down dermatitis herpetiformis and then put me on hold before coming back and saying "yeah, we have seen that before". Not sure how I convinced I am about how it would all play out there, but I could wear my ID badge for that university when I would presumably go in. The other nearby dermatology clinic has a lot of doctors listed but their website says they specialize in skin cancer and cosmetic surgery. I didn't call them. I think I will try the university-related practice first. 

Since I am clearing a harsh bout of rash on my elbows and knees, I wonder how long until I get the next good one that would be suitable for photos and a doctor's visit? I've got one new vesicle on my right knee but I don't want to go in for an appointment showing one vesicle and a bunch of scabs from the last round. I would rather wait for a proper presentation. I wish I would have known what I know now last week when the last rash started. In fact, I have no idea why I didn't research this until now. Kicking myself in the butt.

[squirmingitch]

Welllllllllllllllllll, boy, this feels like telling someone to shoot themselves but here goes......

You could try eating a whole lot of seafood, preferably shellfish, You see, for most of us with dh, high iodine foods are like pouring gas on a fire. A trick we use to help rash flares ramp down is to limit the iodine in our diet so you could play with the opposite.

The rash comes & goes at will whether you're eating gluten or not so it's not something that can always be predicted as to when it will show up or depart.

From what people have come on here & said, for those who had derms who actually understood the rash, they had an appt. with the derm & if they didn't have a nice flare going at that particular time, the derm set it up so when they did have a flare, they could just call & say so & the derms office worked them in within a day or two.

[bartlettcharlie]

39 minutes ago, squirmingitch said:

Welllllllllllllllllll, boy, this feels like telling someone to shoot themselves but here goes......

You could try eating a whole lot of seafood, preferably shellfish, You see, for most of us with dh, high iodine foods are like pouring gas on a fire. A trick we use to help rash flares ramp down is to limit the iodine in our diet so you could play with the opposite.

The rash comes & goes at will whether you're eating gluten or not so it's not something that can always be predicted as to when it will show up or depart.

From what people have come on here & said, for those who had derms who actually understood the rash, they had an appt. with the derm & if they didn't have a nice flare going at that particular time, the derm set it up so when they did have a flare, they could just call & say so & the derms office worked them in within a day or two.

That's good advice and it anticipates a question I had anyway: how are the rashes triggered and is there anything I can do to promote a new one to advance to medical testing.

I was also wondering about the mechanism of clearance of the inflammation and infiltrating cells and then healing of the skin tissue. I doubt we have this known by research. It is possible that recovery from this flare-up could provide a temporary protection against a new bout in the same location. But I don't know. In the past, I should have kept a daily log and took a picture every day. Who has time to document every little thing, though, not realizing that it could be a big thing!

As much as I would like to understand and predict this affliction, I am just going to be a passenger along for the ride.

Yeah, I guess that's the next step too: once I get a rash can I get an appointment quick enough? Good to think about that too. Maybe I should do a forum search for a DH doctor in my city and if I can't find it already posted then post it to the DH forums. I tried to google it but came up with nothing.

[squirmingitch]

I've said it before & I'll say it again; the battle with dh is every bit as much a mental battle as it is a physical one. It doesn't matter that you didn't keep a detailed log & documentation with photos b/c this stuff does what it damn well pleases when it damn well pleases. Trying to figure out a pattern will make you stark raving mad. Ask me how I know.

It's presentation can't be predicted, nor can it's withdrawal. The places it hits? That too is a flip a coin speculation. I can tell you it does like to hit the same places but in what order? Guess. There is no rhyme or reason. We try to put things in little boxes or compartmentalize things. This can't be compartmentalized. It can't be predicted, it can't be tracked.

You might be best going to the derm now & explaining.... bring plenty of highlighted print outs to prove your points. Then broach the subject of getting seen lickety split when you do have a flare.