Dermatitis Herpetiformis ... My Journey

[mamat78]

You do realize that topical steroid use (any steroid use) can give false negatives on Celiac and other autoimmune testing?

Yes, I do know that cortisone will give a false negative but my derm wouldnt do a biopsy on the current area becuase I havent had a new blister that he felt would get  agood result (I have had this breakout for 6 months now) and wanted to wait for a new breakout before testing...I am not willing to wait for it. I am seeing my gp on thursday, getting a new panel done (not sure why but derm wanted it done again) and then will likely go off of gluten from there. I can wait for another breakout just to then have to wait another 2 weeks before even getting in for a biopsy...

[tinpins]

A positive report:  Two weeks into my life without gluten and there is a definite improvement ... less itchy, bleeding much less and no significant new eruptions. This is a huge improvement after all this time. Still major gut issues but that will hopefully resolve itself too given time and all the help I can give it. I'm going to buy myself a medical alert bracelet (should have done it ages ago for the allergies) as a tangible reminder of how lucky I am to have found out what was stealing my quality of life away and potentially leading me to an early demise. And when the physical symptoms let up my bracelet will be my gentle little reminder to never intentionally slip up   

[squirmingitch]

Great news! And I got a medical alert bracelet too. I got one that has the usb thingy so it can be inserted into any computer & read for your allergies/conditions but it can only be changed by you. It doesn't matter if it gets wet ~~~ it still works.

[tinpins]

Great news! And I got a medical alert bracelet too. I got one that has the usb thingy so it can be inserted into any computer & read for your allergies/conditions but it can only be changed by you. It doesn't matter if it gets wet ~~~ it still works.

 

I don't like wearing stuff on my wrist  ... but I dislike DH more. Partly it will be my "crutch" too when I feel like I might be inconveniencing someone by being too particular. My own visual reminder of what's most important 

[sisterlynr]

Just hang in there!  I know the relief of knowing what this and what will heal the condition.  I had an appointment with my PCP Thursday.  I am a bit down over the fact that I am taking Dapsone and still have this rash and eating gluten-free & limited iodine.  I just recently realized some foods had iodine and think that is why I'm broken out.

 

Good report that my LDL is down by 50 points, total weight loss of 43 lbs, heart rate was 72 and BP 120/63.  Sugar is still running high; she encouraged me that it will take more time.

 

I read that when taking Dapsone, you should not have new blisters.  I do have new lesions, especially on the back of my scalp.  My doctor was surprised how badly my lower back and buttocks/hips are broken out.  My belly has some rash but is in the healing stage.

She told me NOT to get in the pool with these open lesions.  That greatly disappoints me.  She told me she would rather I go to the beach as the water is moving and wouldn't have bacteria like a pool.  I do not like the salt water and I see all the gook floating around.  Surprised me, for sure. I have a membership to the YMCA and personally I think the pool water would be cleaner.    
 

[tinpins]

Your journey sounds tough and I would find not being able to swim very disheartening.

 

This condition is so challenging ... the roller coaster effect of the symptoms and emotions is hard to deal with ... yes I confess overwhelming at times ...  and I am so thankful to have found this forum.  Our specialists and PCP/GPs are great at diagnosing and prescribing ... but then we're mostly on our own to cope. 

 

This may be of interest to you. When I saw my specialist last week he prescribed Dapsone (which I won't take If I can avoid it) but he gave me a requisition to have a blood test ... a Open Original Shared Link screening. He said that was necessary to check before starting on this medication. The link is to a wiki article about Glucose-6-phosphate dehydrogenase deficiency.

 

I'm struggling along, as we all on on this journey, and some days are better than others. The "weird" new symptoms are sometimes alarming and I come here to read about others' journeys and realize that it's all part of the process. In my food diary I note symptoms on the facing page to keep track. It will also be a reminder of how far I have come when things start to feel better : )

 

I've been borrowing books from the library and that has been an interesting journey in itself. Some are just a waste of time even checking them out, but one that has been helpful at this point in my journey is by Jules E. Dowler Shepard "Celiac Disease and Living Gluten-Free".  It's an easy book to pick up and read when your head hurts : ) For example:

 

Research has shown than any amount of gluten can damage the intestinal villi of a person with celiac disease (even as little as 1/8 teaspoon of gluten - approximately 1/1000, or 0.5 percent of a slice of bread). Even without symptoms, you are still risking medical complications from celiac disease if you do not follow a strict gluten-free diet and avoid cross-contamination.

 

Simple reminder of the seriousness of this condition. What I like about the book is that she has been through the misery and has found relief and her book takes you through the process step by step. It's nice to have as a resource. I've got other books for nutritional information like the one written by Shelly Case, but sometimes you need encouragement and a view of where you are going as well.  By the time you get to a diagnosis after so many years you feel pretty beat up and this book helps.

 

Open Original Shared Link (not that I ever drank that much ... but it's nice for celebrations) and NSAIDS (can't take anyway) ...okay I can handle that. But when my food allergy tests last week revealed a strong reaction to chocolate I confess to feeling alarmed. Yikes ... what next? No wonder we all feel overwhelmed    And here's a dietitian who is on this journey herself:

Open Original Shared Link

[sisterlynr]

I googled about pool water and I think I'm going to visit the YMCA tomorrow.  I refuse to let Celiac/DH rule my daily activities, other than my food intake.  

 

I saw my Rhuemy this morning for a follow-up.  He asked to see my rash again.  The belly is some better but still inflamed.  He increased my Dapsone usage.  I have had the blood test you mentioned Tinpins.  My liver stats stay around 55 and have for several years, may be from fatty liver, which is mild.

 

He assured me he has a few patients on much higher levels of Dapsone but wants to take 'baby steps' with ordering more, for me.  My PCP initially ordered 2 tabs a day of 25 mg, now I will take 3 tabs to equal 75 mg.  Hopefully the additional Dapsone will help!  

[tinpins]

Hopefully the increased levels of Dapsone will help you ... please share the outcome. I feel the same way as you about not letting this thing control my life ... but some days it controls mine and there's nothing I can do about it. I used to swim regularly but chlorine is not my friend and I had to stop because I was getting debilitating migraine headaches from the combination of the exercise, chlorine and light. I googled about chlorine too and there are some DH folks who reacted badly to it. But I'm beginning to understand that's the nature of celiac too ... different symptoms and reactions. I do hope you can swim and not be negatively affected by the experience. 

[pricklypear1971]

I googled about pool water and I think I'm going to visit the YMCA tomorrow. I refuse to let Celiac/DH rule my daily activities, other than my food intake.

I saw my Rhuemy this morning for a follow-up. He asked to see my rash again. The belly is some better but still inflamed. He increased my Dapsone usage. I have had the blood test you mentioned Tinpins. My liver stats stay around 55 and have for several years, may be from fatty liver, which is mild.

He assured me he has a few patients on much higher levels of Dapsone but wants to take 'baby steps' with ordering more, for me. My PCP initially ordered 2 tabs a day of 25 mg, now I will take 3 tabs to equal 75 mg. Hopefully the additional Dapsone will help!

I found pool water burned my dh sores...and the wet bathing suit rubbed them. That aside, I was fine. Just see how you feel.

[tinpins]

3 weeks tomorrow and there is some definite improvement ... for the first time in over 15 months I was able to have a shower and not be in pain from the water on my back.  So my DH has subsided in intensity in only 3 weeks. Still covered in lesions but they are not as itchy or painful and there are no new eruptions. That's huge 

 

But the gut issues/pain are still very problematic. Buckwheat (organic, plain)  was a trigger yesterday, and tonight I craved rice pudding (baked, brown rice and rice milk) and that was a big mistake.  The food diary is a huge help and my list on the fridge of allowable foods keeps getting amended. I'm thinking the SCD might be the way to go?

[squirmingitch]

Great for no new lesions!!!!!!!!!!!!!!!!!!! Wooooooooooooo Hoooooooooooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Yuppers, the SCD diet might be your ticket.

[tinpins]

Great for no new lesions!!!!!!!!!!!!!!!!!!! Wooooooooooooo Hoooooooooooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Yuppers, the SCD diet might be your ticket.

 

Incredible ... as one gets back the simple little pleasures like a lukewarm shower without pain, the realization of how much DH robs you of starts to become apparent. It's been years of coping, so one adjusts! I ordered my medical ID bracelet today ... it will be my reminder of how lucky I am that I have a condition that I can control without medication or surgery.

 

There's lots of helpful advice re the SCD and my local library has all the books ... SO a little bit of progress every day ... I'm so grateful for that : )

[squirmingitch]

I like your attitude!

[sisterlynr]

Hopefully the increased levels of Dapsone will help you ... please share the outcome. I feel the same way as you about not letting this thing control my life ... but some days it controls mine and there's nothing I can do about it. I used to swim regularly but chlorine is not my friend and I had to stop because I was getting debilitating migraine headaches from the combination of the exercise, chlorine and light. I googled about chlorine too and there are some DH folks who reacted badly to it. But I'm beginning to understand that's the nature of celiac too ... different symptoms and reactions. I do hope you can swim and not be negatively affected by the experience. 

 

 

I went to the pool yesterday without too much stinging.  I waited until 3:30 pm as this Florida sun is so strong.  The sun actually was soothing; I didn't expect that reaction.  I intend to go out in the mornings around 10 - 11 or 2 - 4 afternoons for more trial/error on this sun exposure.  I can tolerate the water and with the Osteoarthritis and joint issues, water aerobics or just aqua walking is what I have to do for exercise.  That is not new to me. . . that's been my only choice of exercise for several years.

 

Tomorrow will be my 3rd day with the increased Dapsone and I think my skin feels better.  Isn't that horrible?  I think.      May have been the sun drying the lesions that feels better.  

 

Talk later and thanks for sharing your journey. . . I learn more everyday!

 

~  Lyn

[tinpins]

I like your attitude!

 

 

 

 

Thanks squirmingitch ...That's my big smiley brave front ... I'm like everyone else here and have my meltdowns and times of feeling overwhelmed. Some days are really tough but here I find encouragement and hope : ) I'm back to the drawing board now with my food choices. I'm going to focus on SCD and see how I fare. My doc got me an appointment to see a dietitian next Monday so by then I'll be armed with my notes and ready with lots of questions. 

[pricklypear1971]

Thanks squirmingitch ...That's my big smiley brave front ... I'm like everyone else here and have my meltdowns and times of feeling overwhelmed. Some days are really tough but here I find encouragement and hope : ) I'm back to the drawing board now with my food choices. I'm going to focus on SCD and see how I fare. My doc got me an appointment to see a dietitian next Monday so by then I'll be armed with my notes and ready with lots of questions.

Remember, if milk seems to be an issue, you can do a modified scd. You can make water or coconut kefir, as an example.

[pricklypear1971]

I went to the pool yesterday without too much stinging. I waited until 3:30 pm as this Florida sun is so strong. The sun actually was soothing; I didn't expect that reaction. I intend to go out in the mornings around 10 - 11 or 2 - 4 afternoons for more trial/error on this sun exposure. I can tolerate the water and with the Osteoarthritis and joint issues, water aerobics or just aqua walking is what I have to do for exercise. That is not new to me. . . that's been my only choice of exercise for several years.

Tomorrow will be my 3rd day with the increased Dapsone and I think my skin feels better. Isn't that horrible? I think. May have been the sun drying the lesions that feels better.

Talk later and thanks for sharing your journey. . . I learn more everyday!

~ Lyn

I know what you mean. In the beginning it's so up and down - you are afraid to hope, even.

I always found going outside and sweating helped my rash - I think because the rash was near my armpits and the sweating softened the scabs. I also wondered if the vitamin d from the sun helped - I was extremely deficient.

[tinpins]

I went to the pool yesterday without too much stinging.  I waited until 3:30 pm as this Florida sun is so strong.  The sun actually was soothing; I didn't expect that reaction.  I intend to go out in the mornings around 10 - 11 or 2 - 4 afternoons for more trial/error on this sun exposure.  I can tolerate the water and with the Osteoarthritis and joint issues, water aerobics or just aqua walking is what I have to do for exercise.  That is not new to me. . . that's been my only choice of exercise for several years.

 

Tomorrow will be my 3rd day with the increased Dapsone and I think my skin feels better.  Isn't that horrible?  I think.      May have been the sun drying the lesions that feels better.  

 

Talk later and thanks for sharing your journey. . . I learn more everyday!

 

~  Lyn

 

 

Progress! It's so good that you can swim without too much discomfort. That's wonderful actually. I don't know enough about Dapsone to be able to comment ... other than to say that sounds like a positive as well. Now that my lesions are less itchy I too can stand being out in the sun for short periods of time in the garden. A month ago I would not have been able to tolerate the sun at all. I've been making notes on the facing page of my food journal about the negatives (all gut related now) and the positives (less itchy and now I can shower and stay out in the sun for a while). Progress. 

[tinpins]

Remember, if milk seems to be an issue, you can do a modified scd. You can make water or coconut kefir, as an example.

 

Yes ... thanks for reminding me ... so many food allergies that I have to pick my way through the allowable food list. I'm finding lots of good resources and recipes online. I don't know if it was you who recommended keeping a food journal, but what a huge help that is. I'm not usually forgetful but when the war is being waged in my gut my brain joins in and goes on strike too  ... brain fog alright! 

[pricklypear1971]

Yes ... thanks for reminding me ... so many food allergies that I have to pick my way through the allowable food list. I'm finding lots of good resources and recipes online. I don't know if it was you who recommended keeping a food journal, but what a huge help that is. I'm not usually forgetful but when the war is being waged in my gut my brain joins in and goes on strike too ... brain fog alright!

I completely understand. I was at the grocery store yesterday without a list - did pretty well until I realized baked beans are hard to make without beans - problem was I was on my way home.

But overall, I did really well remembering what I needed without the list. Progress .

[tinpins]

I found an easy to read article explaining the Specific Carbohydrate Diet:

 

Open Original Shared Link

[tinpins]

I completely understand. I was at the grocery store yesterday without a list - did pretty well until I realized baked beans are hard to make without beans - problem was I was on my way home.

But overall, I did really well remembering what I needed without the list. Progress .

 

Every little step forward is so encouraging ... are you using the SCD diet? I'm still picking my way through the permitted foods for stage 1 but am optimistic that this diet (modified for allergies) will help me.

 

The sun was warm outside in the garden today and I found the lesions on my uncovered arms bothered by it ... not terrible but a warning that this DH journey is unpredictable. 

[pricklypear1971]

Every little step forward is so encouraging ... are you using the SCD diet? I'm still picking my way through the permitted foods for stage 1 but am optimistic that this diet (modified for allergies) will help me.

The sun was warm outside in the garden today and I found the lesions on my uncovered arms bothered by it ... not terrible but a warning that this DH journey is unpredictable.

No, I never did scd but did try to add naturally fermented foods and tried to make water kefir...

My gi issues have been secondary to the dh - I have/had them, but overall I've been quite fortunate. I've had other adventures - blood sugar/adrenal issues, thyroid problems. The glucose issues impacted my food the most. Seem to be much better now. Have discovered the healthier my thyroid/adrenals the more stable the glucose....sigh.

I expect sun could burn the lesions easily - it is raw skin. Mine were under my arms (most of the time), and fairly protected. Clothes/bras rubbed them - that hurt like a sob.

[tinpins]

This is about DH and osteoporosis … 

 

I was diagnosed with osteoporosis 6 years ago. I was shocked … I was healthy (I thought!), active and ate a wholesome diet (lots of whole grains of course!). My GP recommended Fosamax and I said thanks but no thanks send me to a specialist to find the cause. 

 

Specialist did the appropriate tests including the tTG-IgA blood test which came back negative, recommended I take Fosamax. Thanks but no thanks. Since then I've been monitored every year and recently it has gone to two years because I was stable on diet, multivits and exercise.

 

Than along came the diagnosis of DH 22 days ago and look what I stumbled across in my reading!

 

(Read the last sentence in the quote ... I read it over and over ... couldn't believe it at first!)

 

From the book "Going Against the Grain" by Melissa Diane Smith (page 75-76)

 

 

…. low bone mineral density is one of the major complications of celiac disease that goes undiagnosed. There is good news, though:  for celiacs who are diagnosed and treated with a gluten-free diet, there is a significant improvement in bone mineral density in all ages, young and old, and the improvement is better than what can be accomplished with drug treatment of osteoporosis. ⁷   In addition, a study with celiac children found that by simply removing gluten from their diets, there was an increase in bone density greater than that seen in healthy children. ⁸

Most of the improvement on a gluten-free diet occurs in the first year, but it's vital for celiacs to stay on a gluten-free diet. Although there are individual differences, the authors of one long-term follow-up study conclude:  "According to our results, bone disease in celiac patients is cured in most patients during five years on a gluten-free diet." ⁹

 

 

Notes:

⁷  C. Sategna-Guidetti et al., "The effects of 1-year gluten withdrawal on bone mass, bone metabolism and nutritional status in newly diagnosed adult coeliac patients". Alimentary, Pharmacology & Therapeutics 14 (200) 35-43

 

⁸  S.Mora, G. Weber, and G. Barere, "Effect of gluten-free diet on bone mineral content in growing patients with coeliac disease," American Journal of Clinical Nutrition 57 (1993) 224-228

 

⁹  T. Kempainen et al., "Bone recovery after a gluten-free diet:  A 5-year follow-up study," Bone 25 (1999) 355-60

[pricklypear1971]

This is about DH and osteoporosis … 

 

I was diagnosed with osteoporosis 6 years ago. I was shocked … I was healthy (I thought!), active and ate a wholesome diet (lots of whole grains of course!). My GP recommended Fosamax and I said thanks but no thanks send me to a specialist to find the cause. 

 

Specialist did the appropriate tests including the tTG-IgA blood test which came back negative, recommended I take Fosamax. Thanks but no thanks. Since then I've been monitored every year and recently it has gone to two years because I was stable on diet, multivits and exercise.

 

Than along came the diagnosis of DH 22 days ago and look what I stumbled across in my reading!

 

(Read the last sentence in the quote ... I read it over and over ... couldn't believe it at first!)

 

From the book "Going Against the Grain" by Melissa Diane Smith (page 75-76)

 

 

 

Notes:

⁷  C. Sategna-Guidetti et al., "The effects of 1-year gluten withdrawal on bone mass, bone metabolism and nutritional status in newly diagnosed adult coeliac patients". Alimentary, Pharmacology & Therapeutics 14 (200) 35-43

 

⁸  S.Mora, G. Weber, and G. Barere, "Effect of gluten-free diet on bone mineral content in growing patients with coeliac disease," American Journal of Clinical Nutrition 57 (1993) 224-228

 

⁹  T. Kempainen et al., "Bone recovery after a gluten-free diet:  A 5-year follow-up study," Bone 25 (1999) 355-60

Yes. You didn't know the link between the two? Thnk of it this way -you're body was literally starving for nutrients....that damages your bones. Damages your soft tisse, too.