Really good scratcher

It seems that those of us with DH often get negative test results for Celiac's. To me it seems the standards are not set correctly. My blood work and biopsies continually come back negative, but my rash pictures certainly show DH in viewing. I have suffered for three years. I have been on a steroid cream or ointment since my first year. Most prescription strength steroids don't seem to help much. However I am seeing a team of Dermatologists through one of the local University School of Medicines in our city. Two of the derms keep saying (under their breath) Dermatitis Herpetiformis. They agree it is an autoimmune disease, and are treating it as such. They are supportive and they are puzzled as to why the tests come back negative too. They are trying. They have encouraged me to go on the Gluten Free diet as they know this is the best way to treat this condition regardless of the test results. I feel like I am getting the right kind of attention from them.

However, I have taken it upon myself to go Gluten Free no matter what. I am still learning about it! I think I am getting some cross contamination as I still have up and downs with the stomach issues, and just recently a few spots on my skin have increased in the itching intensity and have red bumps in some new places. However some of my older spots are trying to clear up. I see an improvement.

I also made an appointment to see a Gastroenterologist I saw almost ten years ago for stomach issues I had back then. He's familiar with Celiac's. I certainly want to see what he has to say once I hand him my medical history since I last saw him.

I am definitely doing the gluten-free life now. I am new at it. Learning a lot--and there is a lot to learn. It's a little overwhelming and kind of depressing to give up so much right now. I'll get over it and embrace it soon enough, but I know I'll handle it better as I go through the stages of withdrawal from gluten. I have to recognize this is a true, drastic lifestyle change. It is a drastic change from what I was able to eat before. It's going to be hard at first, as I learn about everything. I am so surprised as to the simple things that have wheat, or rye or barley in them. Lots of flavorings have wheat in them. I used to get beef broth and chicken broth for soups and stews in the winter, and most of the regular brands have a wheat base or some kind of wheat flour base in them! Salad dressings have wheat in them! Why? Then I'll have to stop going out to eat and we didn't eat out that often. Restaurant changes-that will be hard. Going out with friends--all things have to be considered. A lot! So it's new, I'm learning, and I'm going through stages of denial and acceptance. It's hard on my family too. I am the only one suffering these symptoms. Strange. Well, one of my sons has some similar symptoms-- so I will be asking him to be observant and then see if he needs tested. He's twenty years old. He says he is lactose intolerant, but it could be a celiac sign. He gets migraines too, fairly often. I had migraines like crazy in my twenties and thirties. I've already told him he may be more susceptible, and to watch his reactions when he eats gluten. I sigh heavily when I can't enjoy some of the foods I used to. Holidays this year will be especially hard. I make the best flour biscuits, but now I guess I won't be able to--at least the way I used to make them. My family will miss that-heck, so will I! I also used to make wonderful home-made yeast bread, but I guess not any longer--at least with the ingredients I used to use. I know I will have to investigate the other types of safe flours available for celiac's, but it will be so hard to adjust right now. It's just too new. Our food budget looks like it will have to increase for the cost of gluten free things. That will be hard right now too.

I thought it would be helpful to have the Celiac's diagnosis from the docs just for official records. I guess that's not needed for anything except for sceptics that can't believe gluten intolerance is a real thing.

I can make my own chicken stock or broth, and I can probably make my own beef broth too.

I am a great cook, and can follow recipe's really well. I am a great experimental cook. Just ask my hubby. He always tells me how good a dish I make, but he'll know he may never get it again because it was recipe #3257 and I won't remember how to do it again! LOL! I can adjust. I can learn to cook gluten free. I am just going through the initial phase of change right now.

You sound like me! These are the exact things I have been going through. I even go the the University Dermatology department! I've been a subject of their Grand Rounds. Still no true DH or Celiac diagnosis! I have been trying Gluten Free for almost a month now. I still have heartburn really terribly, but I feel a little better. My stomach still goes crazy up and down with D and C, and my skin is only partially cleared up due to being recently on Prednisone. My derms do think it definitely is an Auto Immune Disorder and just recently put me on an Immunosuppressant drug called Cellcept. They did try Dapsone-- and for two days my skin started to clear up, and then it reversed because I am allergic to sulphur, and a new and separate rash began on top of the DH. Not fun. They took me off Dapsone immediately. They think this Cellcept will do the trick, but I am on my fourth day of it, and my skin is beginning to get itchy again. It's tolerable, but I just wonder. I am still trying to do this Gluten Free thing, and it's not easy. 50 years of eating wheat with no thought of it being damaging is a very long lifetime habit to break. I have three good sized sons, all over six feet tall and they eat food like crazy. Bread and wheat being a staple and they love it. My hubby also loves wheat and breads. However, hubby will eat any meal I prepare and will not complain. He also cooks some and most of the things he cooks are naturally gluten-free, like grilling, and rice dishes. He makes a mean chili and I hope I can help him alter that a bit so it is gluten-free for me. I am still adjusting to this gluten-free lifestyle. I am trying to keep upbeat about it, but it is so challenging right now and expensive. A friend of mine sent me the tax deductions you can take for being a Celiac. Kind of cool, and to do it right, I want to build an Excel spreadsheet! LOL I work on Excel spreadsheets all day for my day job!

You've been gluten-free for a year now. How did you adjust to this?

I'll go clear the privacy setting on Flickr. Just didn't want the entire Flickr world to see them. It's ok if my DH friends see them, LOL!

O.K. I am not proud of these. I look pretty awful. This is how I have looked now, going on three years. I hope by continuing this new lifestyle, my skin will clear up. I understand though, it can take quite awhile. Sigh.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Pretty rashy, I know! Plus for some reason, in these pictures I am retaining water, so these are not pretty.

Prednisone seems to keep me from retaining water, so my ankles look a little better today.

Now you know why my sign on is Really Good Scratcher!

I was put on Dapsone for a short while, and couldn't tolerate it well at all and was taken off Dapsone. Now i am on an Immunosuppressant drug called Cellcept. My docs/derms all agree I have an Auto Immune disorder. Cellcept is what I am currently on, but I've only been on it three days. So far so good, but it's real early yet. I am hoping this and going Gluten Free will ease my problems.

I was put on Dapsone for a short while, and couldn't tolerate it well at all and was taken off Dapsone. Now i am on an Immunosuppressant drug called Cellcept. My docs/derms all agree I have an Auto Immune disorder. Cellcept is what I am currently on, but I've only been on it three days. So far so good, but it's real early yet. I am hoping this and going Gluten Free will ease my problems.

Hi pricklypear,

I have had two rashes together before when they found out I was allergic to my water pill, and found out sulpher based drugs really give me an allergic reaction. I know how miserable that is!!

Dapsone was tried with me anyway and it didn't take but two weeks and my rash got worse. Took me off Dapsone, and now I am on Cellcept, an Immunosuppressant drug. I've only been on it three days. They want me to take weekly blood tests to make sure I tolerate it O.K.

I worry about these Immunosuppressant drugs though. I have a friend who is into natural healing and she doesn't want me on these drugs at all. But. Big But. haha no pun intended. But. I am so tired of my skin being red, itchy, patchy, sometimes blistery, sometimes thick and bumpy, but consistently a rash. I hate the itch because like my sign-on name states, I am a really good scratcher, and I'll scratch until the itch eases up and I'll have to clean my skin up from the blood I've caused to flow due to the breaking of the skin. Gross I know, but that's how it's been for me. I'll get cold water running and soak a few hand towels and lay the towels on my skin. That helps for about ten to twenty minutes. Then my skin will itch all over again. It's been a rough road to travel.

Right now my skin feels pretty good. I just went off the Prednisone though, and now I am on this medicine called Cellcept. I still itch, but not as much. My hope is that by going Gluten Free, and by trying this Cellcept med, my skin will improve. If the itch goes away, then my scratching will stop! When that happens, my skin will try to improve! Once this happens, I am hoping the Gluten free life will perhaps let me go off the Cellcept med too. That's my plan. Hope it works!

I did see my Dermatopathologist on Monday. The biopsies she took came back negative once again, and so did the blood work for Celiac's. I am a puzzle. I am also disappointed this rash and all my conditions don't point to anything I can work on. It's frustrating!! I want a label for it, because not knowing why this rash is happening to me is for the birds.

I have to admit I am depressed about it. I thought I could keep an upbeat attitude towards this thing but it's overwhelming what they can't explain is happening to my skin and my tummy. For some reason my tummy is going beserk lately and I am really, really trying hard to stay on a Gluten Free diet. I figure it certainly can't hurt me to go gluten free. Now they want to test me for H-Pylori and have a breath test taken. I have been on Prednisone for about three weeks,so just now my skin is starting to look a bit better, but I have scarring and pigmentation where my rash has been. The prednisone treatment did not totally clear my skin up, but I itch less and the redness has gone down and so has the thickness of it gone down, it's like it has flattened out and my skin is smoother. My dermatopathologist has put me on an Immunosuppressant drug called Cellcept. At least she does think it's an Auto Immune disorder, but they can't pinpoint which one or give it a name. It's a bit scary this Cellcept drug that lowers your immune system; and I'll have to have my blood drawn once a week for awhile to make sure my white cell counts don't get thrown off and my liver tolerates it O.K. Lots of fun ahead.

In the meantime, I scheduled an appointment with a Gastroenterologist. I have had acid reflux for almost 20 years. It's time I get that checked out really well. I would love NOT to have heartburn anymore. I would think going gluten free would help that. I still have acid reflux, but maybe I'm not giving this thing much time yet.

I am considering going off coffee. This will be the hardest thing of all for me. I am a dyed in the wool, long time coffee lover. I will try green tea but wow this move will be super hard for me. I will miss coffee very, very much. I am also not looking forward to caffeine withdrawal! Headaches! Oh well, I might as well try it and get over it to see if my acid reflux gets better too. Now I hope my tummy settles down too. I go up and down with craziness there. I seem to have all the "qualifications" to be a true celiac, but the tests come back negative.

Yes I have been going gluten free for a short while now, about four weeks. I am very new to it. It's quite an adjustment for me. My dear husband is so supportive he will eat anything I prepare so it's not too hard for me.

I have been on steroids forever, mostly in creams and ointments for my skin. I have been putting something on my skin twice daily for over two years now. I would guess the steroids show up when they biopsy, so that throws the tests off. I don't know why the blood work and transglutamination tests came back negative. Maybe I do have something different. I am not the expert, but I really believe in my heart it's Celiac's or more likely Duhring's or Dermatitis Herpetiformis. I just hope one day really soon we figure this out. Plus I would love to get rid of all these medical bills and prescriptions. Thousands of dollars have been spent trying to figure out what the heck this stuff is!

So what next? I am trying to cut out gluten; I am new to the iodine thing, so want to cut out Iodine, but wow! Gluten and Iodine are in so many standard things!

I can eat meat--plainly grown and raised. Good I am a carnivore, so that is good. I also love almost all fruits and vegetables. Sigh, huge sigh of relief!

Grains. Still puzzled. Rice is good. Quinoa is good. Seems about it. Not a problem.

I am a baker. Not professionally of course, but my family sure loves it when I bake! I guess I need to find out what grains I can use to bake with! After that, I am just open to see what is available to Gluten Intolerant folks such as I am. Suggestions, especially websites and or LISTS of products that are safe would be so beneficial!

Thanks for all the support!

Thanks everyone for responding! I am starting to learn so much, and yet,... so much more to learn! It's still REALLY NEW to me! The support here is terrific! I will check in here quite often! To all that respond, a great Thank-You from me!

Love this site for the support! Thank-you for all that have responded! I'll let all of you know what the results say tomorrow!

Onward now with my own research, as I feel we are our own best support in our search as to why we have what we have!

  On 10/18/2012 at 2:54 AM, Marilyn R said:

I'm a coffee lover too.

For awhile, I had to substitute green tea. It didn't kill me emotionally or physically. I yearned a bit, but no more than I yearned for other things. (World peace, the end of US occupation in the Middle East, that more grocery stores would carry Against the Grain pizzas and bagels and french bread, or that the South Florida Water District would stop draining water from Lake Okeechobee into the Indian River Lagoon.)

For awhile, I couldn't do dairy either. That hurt.

Now, my breakfast is a scoop of icecream with a cup of coffee poured over it. Sometimes I melt dark chocolate in the cup with a little milk first, add the icecream, stir well, and pour in the coffee. Then I have a frozen banana half spread with nuttela and dark chocolate chips. That covers protein, fruit and dairy, right? Plus antioxidants?

Love your reply Marilyn! Thanks for the humor, albeit the truth too~!

It's so hard right now for those of us that are DH!! I have had this skin condition for so long now, my derm wants to name it after me!LOL! It's a mystery to diagnose. I suppose that is because the panels for testing are just not that up to date. This is a relatively new disease in our world. I would venture to guess its because something agriculturally has changed in the last 30 years or so. Boosting wheat production so that is has MORE PROTEIN would be a huge guess on my part, and it also may be a conspiracy theory, but I like it. I didn't have problems when I was young, and neither did anyone else in my family. It seems like I am the only sibling, or member of my family that has ever presented with this disease. So it puzzles me as to "WHY ME?" I do have hypothyroidism, and I have GERD and heartburn or acid reflux to the point of my taking PROTON PUMP INHIBITORS and or Zantec type acid reducers more than twice a day. I hate heartburn.

With those things in my life, I know my DH is now Gluten related. Tomorrow (Monday), I see the latest dermatologist who is a DERMATOPATHOLOGIST, who also saw my red blotchy, itchy skin up close and personal. We go over a plan to help my skin condition tomorrow.

What I have been reading about gluten free is daunting to someone who has not ventured into the gluten free world all that much yet. I love to go out to eat with my husband, and we may have to cut that down considerably. We love Mexican, and a local restaurant is pretty good with the gluten free stuff. I know the owner very well and I may get her to cut out the cross contamination occurrences once I talk to her about what I know. At least twice a month my hubby and I may get to enjoy a Restaurant meal.

It still is hard to think of letting go of wheat products. I love bread and good wheat bread is what I thought was healthy! I am surprised to find out how many things have wheat in them! Salad dressing!! Wow! Pastes and thickeners all use yeast and wheat.

Now I find IODINE is a culprit too! Lots of things have IODINE!!! I have been reading about SALS too. OMG That too? What the Heck can you eat???

I thought my attitude was going to be pretty good about going gluten free, but now I certainly wonder!

For those of you who have stayed on this lifestyle I admire you! I will certainly use you as my inspiration! I have so much to learn and so much to try.

Wish me good luck as I go through this trial. It looks like a lifetime commitment, and that is what I am having a little of a hard time adjusting to at the moment. I know I will get over it, accept it and leap beyond the hardships of adjusting, but right now, I am quite overwhelmed.

Why is Sea Salt so bad when it doesn't contain Iodine?

I feel overwhelmed as well. It's all really new to me too. Last year right after Thanksgiving--as I always host for our family, I had a terrible break out rash. Had the rash prior to that Thanksgiving, but that was the real date in my life I finally figured out for myself it could all be Gluten Related disease. I woke up in the middle of the night with my skin just burning! I put cold ice packs and cold wash cloths on my skin three times during the night. Of course I purposely ate everything gluten I could, including Home Made Bread from scratch. I have usually made home made bread for special holidays for years and years. My family and friends love my home made breads and biscuits! I love my home made bread and biscuits too! Both of these include real yeast after it has been activated. It always TASTES awesome. Now it should be never more. Sigh. I am trying to get over this. My skin rashes are horrible. They itch with an intensity that is amazing even to those who know what this is all about.

I am still rather overwhelmed as to what this disease does to us! I am so amazed as to how long and hard it has taken to diagnose! Three Years plus!! And I think I have been suffering many years prior to this skin outbreak from three years ago.

I feel for you! You ARE NOT ALONE! Many of us suffer unknowing why and for what reasons! We puzzle as to why this is happening to us! Our doctors are scrambleing as to why we are suffering these symptoms!

Last year after my Thanksgiving breakout, I went to a new dermatologist. He and his partner took one look at my red, blistery, patchy, symetrical rash all over my body and they both thought it looked like "The Celiac Rash". They took scrapings and biopsies. Guess what. They came back negative for Celiacs!!! Because the results of the blood tests and the biopsies came back negative for Celiac's, I thought, Good! At least I don't have to go Gluten Free!! At that time I also found out the biopsies they took showed allergy to Sulpher. At the time I was on a sulpher based drug for water retention. I was taken off that, and put on Prednisone. Those two things started to clear up my skin. I thought, good! I can still have my beloved wheat products. After the Prednisone drugs wore off, guess what? My skin rash came back with a vengeance! Itch, itch, itch!!! Dang it!

Rash, scratch and itch! Hence my sign on name: Really Good Scratcher! I can scratch anything and any where just to relieve this annoying itch! I have the best tools for scratching this annoyingly itchy skin! I find I can't get relief until I scratch myself silly and I am probably leaving huge areas of my skin to be scarred permanently.

Yes I am totally overwhelmed. It is very daunting to change a lifestyle of eating habits. I have been told all I can eat is celery and water. Wow, that is very appealing. NOT!

Still, I am open to suggestions, advice and shopping lists. The lifestyle changes I must make will be very hard, but I am willing to try. I would just love my skin to clear up and STOP ITCHING!

Overwhelmed? Most certainly! But I bet we are not alone!

I have been battling a terrible skin rash for over three years now. I have seen several dermatologists. They have all been wonderful. Yet we are still trying to determine what I have. It has been diagnosed over the past three years as simple dermititis, eczema, and Psoriasis. I have been on Embrel and that failed, and Humira and that failed. I have had skin patch testing but all that turned out to be was light allergy to perfumes and added scents to lotions, soaps and creams. I have been using Free and Clear soaps, unscented lotions and creams and the total free of dyes, scents and other additives to my ointments and creams and make-up, and personal hygiene for cleansing everything. I have not noticed a change. I am also allergic to sulpher and medicine and drugs with sulpher in them. Dapsone is a sulpher based drug, but I was put on it for a tiny bit of time and my skin reacted to the sulpher in the Dapsone-so I was taken off that. On my own I have been trying the Gluten Free diet now for about three weeks. I can't see a change yet. My skin is still very, very itchy. It is a little better at the moment because I am on Prednisone.

I used to get Poison Ivy rashes every year as a kid because I explored so much in the woods and properties my parents owned. Out of my five other siblings, I would always seem to get it the worst. This makes me wonder if my skin has always been more sensitive to things, although as a kid I thought it was pretty normal.

I love how Prednisone finally clears up my skin, but as soon as I run out my skin goes back to the itchy, itchy rash and bumps. I also worry what Prednisone does to the body over a period of time. This is about the fourth time in the past three years I have been put on a Prednisone treatment.

My blood tests always come back negative for Celiacs. That's just nuts. I know it has to be related to Gluten-after researching for information on my own. I am just puzzled as to why in my middle-aged years I am now so affected with this skin condition?

I go this coming Monday to my latest dermatologist who is also a Dermatopathologist. My other dermatologists have sent her my past skin biopsies and since they came back negative to Celiac's, they wanted me to visit her while my skin was at it's worst. She had several other doctors view my skin too. They took four more skin biopsies about two weeks ago. Monday I get my stitches out, and we can go over a plan of treatment then. She believes I do have an Auto-Immune dis-order and will probably need an Immunosuppressive drug to treat it. I worry about those Immunosuppressive drugs and they lower your ability to fight off infections. At this point I am willing to do just about anything to clear up this itchy, itchy, red, blotchy, thick bumpy rash. I am hoping a Gluten Free diet will clear up my skin. I also have read it could take awhile. Sigh. I would sure love to have my skin clear up.

I am overwhelmed too. Going Gluten Free is very new to me. It is a complete change. It's kind of hard right now. I worry how sensitive I am. I read about cross-contamination and now I worry about that! Really, does all it take is a tiny tiny amount of gluten to offset your progress? The other day a friend of mine made me a salad and proudly told me she took off the croutons for me. It was so hard to tell her I couldn't even eat foods where bread had touched something else. Do you absorb gluten by touching it, but not eating it? I make meals for my family, do I have to avoid touching wheat products forever? Can't I just wash my hands right afterwards? Why so little to be so sensitive to it? That's a mystery to me! I am trying to stay upbeat and have a good attitude towards this new way of eating and lifestyle. Even with reading a lot about gluten sensitivity, there is so much more to learn!

I wondered about Xantham gum and Guar too! I thought those were safe. Wow the things to avoid! It's a little overwhelming to a newbie.

Good article! This could explain why so many are mis-diagnosed! I like where it says, Agricultural changes to wheat production may have boosted the protein. Could be a conspiracy theory, but I love conspiracy theories!

I am so new at this! I have been un-officially diagnosed, but three of my doctors tell me to to try the Gluten Free life. I have been trying for a few weeks now. It's not easy at all yet. I think I have a good attitude, but the adjustment is still very new, and I am still trying to figure out what to avoid and what to have. I get heart burn and acid reflux so easy, I certainly hope this goes away soon. I happen to love, love, love coffee with cream. I can avoid sugar, but I love, really love coffee, and real cream. I hope I don't have to give up coffee to avoid heart burn. I can give up gluten I am certain, but my coffee will be hard. I have had Gerd and acid reflux for many years, probably over 20 years.

My skin is awful. I've been told I have the Celiac's rash, but it was first diagnosed as dermititis. Then it never got better, and it itched like crazy. Then it was diagnosed as Psoriasis. I was even put on Humira. That failed. Then I was put on Embrel. That failed. Then I went to a new dermatologist. He saw my crazy, red, sort of blistery rash and said it looked like a Celiac's rash so he took scrapings and biopsies, but they came back negative for Celiac's! I have battled this skin stuff and have had more skin biopsies taken. I still have the stitches in place from my last biopsy taken about a week ago. I get those stitches taken out next week. A Dermitopathologist took these last biopsies. I have been told it certainly looks like an auto-immune disorder, and may have to go on some kind of immunosuppressive drug to combat my discomfort. Just before I saw my dermitopathologist, my current dermatologist kept muttering under his breath the words: dermititis herpetiformis. I was even put on Dapsone but that didn't work. I have an allergy to sulpher, and dapsone has sulpher in it. My skin reacted more to that. This has been a true battle. I just don't know why it's so hard to diagnose! You would think that with so many of us suffering the diagnosis would be easier to determine! I have some pictures but I am so new to this forum, I have to wait until I post ten approved posts. When I get to that point, I'll try to upload the pictures of my rash. Right now I am still taking Prednisone for the skin. It is the only thing that can clear up my skin to a point. By the time my skin finally looks like it has tried to clear up, my Predinsone prescription is done, and my skin rash re-appears. I hope that doesn't happen again. When my dermatologist mentioned dermititis herpetiformis, I started my Gluten Free diet. I tried it about a year ago too, but since those skin biopsies came back negative to Celiac's, I went back to eating Gluten because I thought, well it can't be Gluten that's causing my skin to erupt and my stomach to go crazy. The tests came back negative. Now after much reading and tons of Internet searches and article reading, I am certain my skin is a form of the dermititis herpetiformis, and my stomach troubles certainly resemble those of a Celiac. I also have Hypo-thyroid and am taking Levo-thyroxin (generic Synthrex)to help that out. These all seem to go hand in hand if you have an intolerance to gluten. So why the negative diagnosis? Next Tuesday, I will see the Dermatopathologist, a board certified Dermatologist, who also took my skin patch tests this summer--we will go over what she diagnosed and my course of treatment. I have to admit, my doctors are really trying to get to the cause of all this. I just hope I am successful in what ever I need to do.