Gluten Free: How Long To See Dh Improve?

[JenR]

I have an undiagnosed rash, on & off for the past decade. Recently biopsied (the rash, not the healthy skin outside it) and found to be not psoriasis, but not anything else in particular. I can post the verbiage from the biopsy report if it might be useful to anyone. I'd be happy to hear opinions on whether this sounds like DH (I've looked at lots of photos online and it seems plausible) and if there are any "tricks" to figuring it out that don't involve the doctor.

My original outbreak 10+ years ago was red, horribly itchy bumps on extensor surfaces - knees, elbows, all the little bumpy bony joints and places on my hands, fingers, wrists - even my hip bones! Heat makes it worse. It was "diagnosed" as granuloma annulare at that point (which is not itchy; I'm sure that was wrong.)

Subsequent spells are primarily knees and elbows, often symmetrical but not always. In the past few months had an itchy spot about 1" by 2" on one knee that came and went every few weeks. Sometimes the other knee would join in. Finally got the aforementioned biopsy. Sometimes the rash appears as distinct bumps, sometimes they merge into a patch. Sometimes the individual bumps appear to have a depression in the center.

Here's the odd part: after the biopsy it broke out in many other places! More on the original knee, down the side and front of that leg, a little bit on the other knee and one elbow, and HORRIBLE patches wrapping around my ankles. A couple spots on one shoulder and a few in my mid upper back. I saw my rheumatologist today (also have undiagnosed back pain and indications of inflammation in my hands, wrists, ankles, and feet, but no sign of inflammation in bloodwork.) She told me it was from NERVOUS SCRATCHING. It's NOT. Then again she wants to insist my back pain is fibromyalgia (I'm pretty sure IT'S NOT.)

Lastly, the rash seems to clear on its own within one or more weeks. It fades to purple then goes entirely away. Topicals seem to have marginal benefit. I currently have a prescription steroid from my derm, but it's an ointment - what a mess, unless you have the luxury of going around naked all the time!

I haven't tried to eliminate gluten. I don't have a DH or celiac diagnosis, no other celiac symptoms. No celiacs in my family that we know of. From what I've read here I know that iodine as well as gluten could trigger a DH flare. I do take a generic levothyroxine (88.5 mcg alternating with 100 mcg daily) and have for 6.5 years, which I guess may have iodine. My doc has recently experimented with pain meds as ibuprofen didn't work, naproxen and tramadol constipated me, diclofenac worked OK, nabumetone works better. I have seen mention to NSAIDS and iodine. Have had trouble finding out if the one I've been on for a while, nabumetone, would have iodine in it or its prep. I also recently increased from 1000mg to 2000mg fish oil per day (have hereditary predisposition to high cholesterol) and just now made the connection to iodine there.

Other than another biopsy (I will press when I see my derm tomorrow afternoon!) are there any "home tests" I could do - I would be willing to go off the pain meds and fish oil but not the thyroid meds for probably obvious reasons. I would even be willing to trial a gluten free diet but would like some sense of how long I might have to do it to see an improvement.

[ravenwoodglass]

That does sound like DH. When you see the derm again you might want to ask to have the biopsy done looking specifically for DH. Go to a website like Pubmed and print out the description of the biopsy process. If the doctor seems clueless about the need to biopsy the skin next to the lesion then give him the printout.

As far as how long it takes the DH to improve that can be quite individual. In my case I stopped seeing new lesions within a couple of weeks. For the first couple of years an outbreak would be one of my first 'whoops' indications but after that it has taken a lot to give me lesions again.

[Mother of Jibril]

I do take a generic levothyroxine (88.5 mcg alternating with 100 mcg daily) and have for 6.5 years, which I guess may have iodine.

Autoimmune hypothyroidism is one of the disorders that clusters with celiac disease (which is also an autoimmune disorder). I would be very surprised if levothyroxine contains iodine... in someone with Hashimoto's disease (autoimmune hypothyroidism) it can actually make things worse.

It seems like a celiac panel would be a good idea too. If DH is confirmed with a biopsy you don't need it, but who knows what might turn up. You can have celiac disease without GI symptoms.

[ang1e0251]

My DH took several weeks to clear up and a little more for the skin to be a normal pink color. But that was on the gluten free diet. If it's DH, you won't clear up while eating gluten. If you have a proper biopsy done and it is positive for DH, that is a clear dx of celiac. No more testing is necesary unless you want it. If you want the tests, continue eating gluten without a break until you test. Let us know how you fare!

[nora-n]

I think you need a biospy of healsthy skin that never had any of that rash (as the IgA is used up in the outbreak) and during an outbreak.

I had a biopsy done after an outbreak and it was negative.

Right now I have just had a new outbreak with worse blisters just exactly on the biopsy spot behind my ear! Also, after the biopsy, I had some burnign blisters on the biopsy site just like you had.

Your thing sound so much like DH.................................

nora

[clydeshannon5]

I would totally say this is DH, which means you have celiac. Try the gluten free diet and usually within 2-4 weeks you will know if it is working. My DH was/is so bad that I had it from head to tow. Within 10 days I saw the inflamation going down, within 18 days the itch lessened.

Nothing to loose! Try it and see.

take care

[JenR]

Thanks for all the helpful feedback! I followed up with my derm this week and he tried suggesting it might be from fleas ... I do have one indoor cat but come on, I don't think so! And then he said the only other thing he's thought of is DH - ding ding ding! Rather than do another biopsy he decided to send me for bloodwork, the tissue transglutaminase test, which from what I've read has near perfect sensitivity and specificity for celiac. I hope to have results tomorrow....

[ravenwoodglass]

Thanks for all the helpful feedback! I followed up with my derm this week and he tried suggesting it might be from fleas ... I do have one indoor cat but come on, I don't think so! And then he said the only other thing he's thought of is DH - ding ding ding! Rather than do another biopsy he decided to send me for bloodwork, the tissue transglutaminase test, which from what I've read has near perfect sensitivity and specificity for celiac. I hope to have results tomorrow....

No matter what the results of that blood test do give the diet a real strict try. False negatives are possible even with the Ttg. I have to wonder why he was reluctant to do the biopsy unless he was reluctant to admit he did it wrong the first time.

[JenR]

I think you misunderstood. He didn't strike me as reluctant to do the biopsy. He felt the blood test was the best way to go. From my reading it appears to be the gold standard for diagnosing celiac, even more so than endoscopic biopsy. It's certainly less invasive! From all I have read, it appears to me that the blood test is more accurate than the biopsy would be, and biopsies are owie - I still have a divot from the one he did six weeks ago! So I am fine with not having another one! And to be fair, I don't think he did anything wrong the first time... I have a lot of back and joint pain and I was thinking it was psoriasis which would make my pain psoriatic arthritis. So I was pushing for a biopsy for psoriasis. The report of the biopsy does have a few components that, from what I could find on the web, may ring true with what you'd find in a DH rash.

Why do you think I should give the diet a try if a highly sensitive test says I don't have celiac? It feels like a long shot to me - seems the diet takes months or years to improve DH, and my rash comes and goes as it is. Obviously I don't need to tell anyone here that taking on the diet would be a MASSIVE undertaking - so I need to really feel it is worth my while! I am open to hearing your reasoning, though.

[ravenwoodglass]

I think you misunderstood. He didn't strike me as reluctant to do the biopsy. He felt the blood test was the best way to go. From my reading it appears to be the gold standard for diagnosing celiac, even more so than endoscopic biopsy. It's certainly less invasive! From all I have read, it appears to me that the blood test is more accurate than the biopsy would be, and biopsies are owie - I still have a divot from the one he did six weeks ago! So I am fine with not having another one! And to be fair, I don't think he did anything wrong the first time... I have a lot of back and joint pain and I was thinking it was psoriasis which would make my pain psoriatic arthritis. So I was pushing for a biopsy for psoriasis. The report of the biopsy does have a few components that, from what I could find on the web, may ring true with what you'd find in a DH rash.

Why do you think I should give the diet a try if a highly sensitive test says I don't have celiac? It feels like a long shot to me - seems the diet takes months or years to improve DH, and my rash comes and goes as it is. Obviously I don't need to tell anyone here that taking on the diet would be a MASSIVE undertaking - so I need to really feel it is worth my while! I am open to hearing your reasoning, though.

The best reason is in my signature. I started out with DH in childhood that was misdiagnosed as poison ivy for many many years. The celiac in my teen years then choose to hit my joints, tendons and muscles and it wasn't until after I had my first child, after years and years of trying, that the GI stuff hit. Even when that hit the D was painless and I ignored it because at first it only hit during the two weeks before my period. So I started living off of immodium and trying to ignore the increasing pain and disability from arthritis and my nerve and balance issues. I was in really rough shape by the time they started to check for celiac and unfortunately I showed negative in the panels run. They didn't look any further although they reran those tests over and over. Every time a negative result would come in the doctors would just tell me to be glad I didn't have it but never told me what 'it' was so I never had the chance to even try the diet. I would give anything to be able to go back to when I 'just' had skin lesions but the damage is now done. Celiac and the autoimmune response can and will choose to attack any organs it wants to and even if your only issues right now seem to be skin related it is likely that more is coming down the line. When I was finally diagnosed I was just happy to have all the tummy issues go away and never expected for so many other things that I had lived with to go into remission. Doctors in this country do not usually diagnose us till we are in the end stages of the disease, often some of the damage will be permanent by then. IMHO if you have an issue with gluten it is better to stop the autoimmune reaction before it hits the brain, thyroid, gallbladder, liver or another organ.

[ang1e0251]

IMO I would not call the blood tests the gold standard. Read the forum and you'll come across patient after patient who tests negative but had celiac or gluten intolerance. This is your health and the consequences of ignoring the possibilty of this particular intolerance can be grave. Read the signatures of people on this forum and discover irreperable damage caused by waiting to try the diet. Usually this was because the person didn't know much about gluten or they trusted their dr's to have all the info. IMO that is a mistake. Many of us long to go back in time and take control of our medical care at a point where the dangerous damage to our bodies was at a minimum. That is the point where you are now. Do not be in denial. Withold a decision not to try the diet until after you read many peoples' stories on this forum, you can then make an informed opinion about what's best for you.

Whatever that decision is, we'll stand with you as you go forward.

[JenR]

ravenwood, thanks for telling me your story. I'm really sorry you had to go through all those years of denial and misdiagnosis from your healthcare providers. It's so sad that this happens. Unfortunately it happens with lots of ailments - I've heard similar stories from people with chronic progressive spinal arthritis as well, and I myself have been through three rheumatologists who refuse to diagnose me but only want to give me pain pills! I also have a 7.5 year old daughter with Crohn's Disease and while I was able to get her diagnosed pretty quickly, I have heard amazing horror stories from other parents about how their children's pain and other symptoms were blown off by multiple specialists. Can you tell me more about celiac affecting joints, tendons, etc.? I have searched for info on this, wondering if it could explain not only my rash but my pain in my back, SI joint, hands, and feet, but haven't found anything.

angle, thanks for the support. As you can see from what I wrote above, I'm not the kind of person who simply trusts their doc - I'm not afraid to question them, and often do. But as everyone here knows, you always have a sense of "how far I can go" with any particular doctor before they shut down and you have to find a new one. I got in quickly with this derm because I was referred by my rheumy, but here in Cincinnati if you self refer to a derm you are looking at a 5-6 month wait.

It is hard to imagine pushing my derm to do a biopsy near the rash to look for IgA. If the blood test comes back negative, I don't feel like I have a significant basis for the suspicion of DH/celiac given I have no GI symptoms and nobody in my family has DH/celiac.

I'm concerned about trying the diet because I am uncertain if I will be able to tell if it is having an effect. My rash comes and goes, often absent for months, and except for my recent experience and the initial rash I had in 1998, it's generally confined to small areas on my knees and elbows. So if I do the elimination diet I would have a hard time knowing if the rash was gone due to the diet or just because it was gone, KWIM?

I really appreciate all the support and guidance. I'll give a follow-up when I have the bloodwork results, hopefully today.

[happygirl]

If you have the tTG IgA done, make sure the total IgA is done. You cannot correctly interpret any IgA based test if you are IgA deficient.

No one blood test is 100% specific or sensitive. Columbia's Celiac Center states that, "Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease."

You may not have Celiac or DH - but its better to know that correctly, than have a doctor state it incorrectly, without proper testing.

[JenR]

Well, the ttg was negative. I can see why one should always run iga with it, but he didn't. So now I don't know what to do. I don't have any real reason to push for more testing - my symptoms aren't any more specific for celiac than they are for a handful of other things, and I don't want to risk alienating my dermatologist. AUGH.

At any rate, the cream he most recently prescribed, clobetasol propionate (generic for Temovate), seems to be working to alleviate the rash. It's either that or the change I made in the rx NSAID I take for my back pain - from nabumetone to diclofenac - so maybe the rash is simply a reaction to the nabumetone. See why I'm reluctant to push?

[happygirl]

Well, hopefully it isn't Celiac/gluten related, and the topical medications help. But, in the case that it doesn't, or you develop other symptoms, you now have the information you need to get the correct testing completed.

Good luck!

[ravenwoodglass]

Can you tell me more about celiac affecting joints, tendons, etc.? I have searched for info on this, wondering if it could explain not only my rash but my pain in my back, SI joint, hands, and feet, but haven't found anything.

The following link and quote is from the National Institute of Health. It states really well why I am saying you should try the diet even with the negative blood. The bold is mine. By the way you should get an actual copy of the report. Many doctors if it is a low positive would say it is negative. Even one point into the poitive range is positive. Also have they tested your DD for celiac? Have you tried an elimination diet with her to see if it gives relief from the Chrons?

Open Original Shared Link

Adults are less likely to have digestive symptoms and may instead have one or more of the following:

unexplained iron-deficiency anemia

fatigue

bone or joint pain

arthritis

bone loss or osteoporosis

depression or anxiety

tingling numbness in the hands and feet

seizures

missed menstrual periods

infertility or recurrent miscarriage

canker sores inside the mouth

an itchy skin rash called dermatitis herpetiformis

[harp1]

Well, hopefully it isn't Celiac/gluten related, and the topical medications help. But, in the case that it doesn't, or you develop other symptoms, you know have the information you need to get the correct testing completed.

Good luck!

I wish you the best. I didn't take my doctors advice and only eliminated wheat and did not eliiminate soy and dairy. Major meltdown a year later with massive peripheral neuropathy (could hardly use my hands-I'm a musician) and massive DH. Now I'm really clean and the DH is almost gone on my scalp 6 years later, I still have one finger that doesn't work. It's good you have all this support, has your dermatologist treated other cases of DH? Second opinion with another dermatologist? Hope so. Good luck. Keep us posted. BTW somebody may have said this already, does your rash feel like this- you're wrapped in barbwire, you have a bad sunburn and you are wrapped in an electric blanket that's turned on high? That's what my DH felt like for a longggg time. harp1

[ang1e0251]

I had more than half of the symptoms on ravenwoodglass's list all of which have disapeared or improved drastically over the past year on the gluten-free diet. You say you can't imagine how you would know if it's working? I'm betting feelings you never imagined were related to your food will astound you if you give the diet a trial. Moreover, your dd sounds like she would also find relief. Many on this forum were diagnosed with Crohns and were helped going gluten-free. You don't need your dr's permission to try it and it is not an unhealthy diet for either of you. What do you have to lose? You won't be any worse off if it doesn't work but it could be the key to a lifetime of freedom if it does.

Either way, we will support your decision. Let us know how you are feeling and I hope your given the answers you seek.

[JenR]

I have seen the list, ravenwood, and I really don't have any of those problems. I do have chronic pain in my thoracic spine and SI joints but with all the research I've done I'm inclined to believe it is spondylitis more than anything I've seen.

As for my daughter, based on her initial symptoms (classic Crohn's - blood and mucous in her stool - diapers so I saw it all myself - and abdominal pain & diarrhea, then loss of appetite) and the results of her endoscopy and colonoscopy, as well as her great response to drugs (first prednisone, then 6-MP which is an immunomodulator) I feel 100% comfortable with her Crohn's diagnosis. Happily she has remained in remission over 4 years now and is a happy healthy 7.5 year old.

Interesting what you say about the labs though. I do routinely get copies of all my labs, MRIs, etc. so I'll remember what you said when I look at this lab result!

Harp, I can't say my rash feels the way you described. When it itches it does also feel hot - and heat can make it itch more, like if I'm near the fireplace or working out at the gym - but not the barbed wire sensation. I believe my derm has had other patients with DH as he is the one who mentioned it as a possibility (although I'd already been thinking about it.) He said he'd do the blood test and added, "It's not a diagnosis you want." I asked, if it's DH it's celiac and I need to do the diet, right? - and he said, yes. So I think he understands.

I really don't see a reason to pursue the gluten-free diet at this time. But I won't be deleting the link to this forum, or throwing away the info I have obtained about DH and celiac. Thanks again to everyone for the support and kind words. I'm kind of astounded by the passion with which several of you seem convinced I have DH and should be on the diet. It does give me pause. If I change my mind, I'll be back!

[mysecretcurse]

It takes me about a month off of any gluten, chickpeas or any other irritants, to fully clear.

[whistle]

From what I've read here I know that iodine as well as gluten could trigger a DH flare. I do take a generic levothyroxine (88.5 mcg alternating with 100 mcg daily) and have for 6.5 years, which I guess may have iodine. My doc has recently experimented with pain meds as ibuprofen didn't work, naproxen and tramadol constipated me, diclofenac worked OK, nabumetone works better. I have seen mention to NSAIDS and iodine. Have had trouble finding out if the one I've been on for a while, nabumetone, would have iodine in it or its prep. I also recently increased from 1000mg to 2000mg fish oil per day (have hereditary predisposition to high cholesterol) and just now made the connection to iodine there.

Just in case you start looking into whether or not your levothyroxine contains iodine, I thought I'd try to prevent possible confusion. The reason iodine is an essential nutrient is that iodine is an essential component of thyroid hormones. "Levothyroxine" or "thyroxine" is the same thing as the thyroid hormone, "T4". The "4" in T4 stands for the number of iodine atoms in each molecule of the hormone. So, thyroxine MUST contain iodine. If it doesn't, it's not thyroxine, and it's useless. So keep taking the thyroid meds, and don't be afraid of the iodine in them. If you want to reduce iodine in your diet, there are foods you can avoid, keeping in mind that some iodine is required for thyroid function. Here's one link that may be helpful:

Open Original Shared Link

Of course, if your rash is DH, then you need to cut out gluten and not just reduce iodine.

Best wishes, and good health to you and yours!

[whistle]

I forgot to mention that I looked at a lot of DH sites and the pictures they showed never really described my rash. It manifests itself differently in different people. But then I found the following link that has a larger selection of photos, which you might want to check out. (I don't yet know if I have DH, but my rash looks exactly like DH3 and DH4 except that it's usually on the inside of my elbows.) Click on a picture if you want a closer look.

Open Original Shared Link