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I am now certain I have been dealing with DH... I am on my third month being gluten-free and am finally seeing improvement in the rash, although it has not resolved entirely. I am also on low iodine diet (shooting for no, but am not as good at weeding this out as I am the gluten!). Finally sleeping at night again, seeing lesions healing up again (after an accidental glutening with communion bread a month ago)... itch is still present but much less maddening.
When I was first researching celiac disease and DH... I know that I read somewhere that there are some fruits that are high in something (started with an S!) some people with DH should avoid. I am trying to find that information again and can't seem to come up with the right search terms :/
This may sound nutso to some, but I had someone praying with me recently who suggested a connection with fruit.
I want to make sure I have addressed anything that may be contributing. Planned on cutting out those fruits for a while and then challenging to see if there is any difference. I know in this world we see in part and prophesy in part, and he may be off base. But does NOT hurt to ask!
If any of you can point me in the right direction, I would appreciate it!
I am extremely curious to see if any of the more experienced on the boards have had this same issue. I have also noticed joint pain that appears to be associated with an outbreak- but wasn't sure if it was just in my head or not and so I never mentioned it.... Wondering now if it COULD actually be related!
I've also got a few pairs of lightweight sweats that I wear a lot. And last summer- when things all flared... I learned the magic of the maxi skirt. Long, cotton joy... nothing touching my legs anywhere, and they go to the ankle so no one had to see the horror hiding beneath I wore them until I absolutely could not stand the cold anymore and have them on standby for any day that happens along over 50 degrees now!!!
Curious- I had to stop wearing a necklace I have been wearing for over four years. I really don't think it's the actual metal... I think it was just the annoyance of the chain/pendant moving around on my skin. Anyone else have this experience???
And thank you for your thoughts regarding communion. I am not Catholic so it's technically not mass. I have found a recipe for gluten free communion bread that I'm going to try. Thankfully, I am in a position that I can perhaps control the kind of bread that we use, at least for this current event (ongoing weekly meeings for the next month or so). Church is another story but I will cross that bridge at another time! It is the only gluten sacrifice that has "hurt" in any significant way. I miss some of the other things occasionally, but this is the one thing that I have actually paused on. I know that I have to have an alternative, and my heart is beginning to rest in that finally.
Means the world to be able to talk to people who REALLY REALLY understand. It is exhausting explaining the situation to people over and over and over again. Even for those who may be familiar with celiac, almost none have heard of associated DH.
one more things- I can barely tolerate "real" pants also. I spend most all of my time in yogo pants around the house. When I wear jeans, anywhere that is at all constrictive gets insanely itchy and will often have a break out. So you aren't alone in that either! I can't stand to wear socks that go over my ankles, and even then I take them off asap (and i usually always have socks on!)
I got glutened about a week into my gluten-free diet (enough that I had GI issues)... and still noticed improvement after about four weeks. Some people have reported not noticing improvement for MUCH longer, but I think it has a lot to do with how quickly you can get every drop of gluten from your diet, as well as how long the disease/rash has run rampant without diagnosis.
I have been following the thread but missed the ones about and with the pics while traveling to and from Texas recently! I just looked back and YES- that is very very very much like my rash! I am surprised because I haven't seen a lot of other pics with the underlying red rash along with the lesions, and had wondered before the improvement/relapse if I really WAS on the right track. My legs very much have large, angry, red areas that are wildly itchy/burning (almost all of my skin itches in some way), and then on top of that are the lesions that are round and deep like yours.
My arms have some lesions (mainly on the elbows) but I also get large patches on my bicep area that is just the red angry looking rash but feels a lot more dry than my legs. Not sure what that is about? But it itches like a dickens!
ALSO- while looking back for the pics saw the post about epsom salts. Going to try that RIGHT NOW.
Well- last week by Weds I could see a HUGE improvement. I had no visible rash on my arms (still the phantom itching, but it was absolutely tolerable), the lesions on my legs were in the process of healing, the red underlying rash was so much less angry. I was actually able to say that I was definitely, definitely seeing the rewards of being gluten free after four weeks.
Then, Thurs night I was at an event and without thinking I took communion. Straight from a loaf of bread. This is so a part of my life I just didn't consider not taking it until the bread was already swallowed. That night I had definite, immediate GI issues. Since then I do feel like I am back to square one almost. The flare on my legs is horrible, new lesions, up all night. Rash has returned on both arms (although not as bad). I would say the lesions don't seem as large around as they were before but they itch every bit as bad.
This was with one bite of bread Now I am sorting out what in the world I will do about communion. I have options (taking my own bread, ordering gluten-free wafers to use when others use bread, etc)... but there is something beautiful about partaking with the entire body. I am just sorting this out spiritually and trying to figure out where the Lord is leading me in this.
Every day I am hoping to see all that improvement return. But I haven't yet. I certainly hope this doesn't set my clock all the way back- and that it will be another 4 weeks before I can breathe a sigh of relief. I will say that, since I am still waiting to get in with a dermatologist, I have found myself thankful for this inadvertent gluten "challenge" and I know that I know that I know I am dealing with DH here.
Hey girl!!! Let me offer you hope, because when I wrote my original post I felt completely HOPELESS.... I am seeing improvement!!!!!!
I am over four weeks gluten free (and three weeks on low/no iodine) and am finally seeing improvement!!! I still have the lesions, but they are beginning to heal, are much smaller and MUCH less "deep" (some of mine were so deep that the lotion would get caught in them when I was applying, I know that sounds gross, but don't know how else to describe). The itch is definitely still there, but I do feel like it is less intense, and I have actually had two decent night's sleep (woke up itching just twice night before last, and once last night... applied an ice pack and quickly dozed back off to sleep, which is amazing).
The challenge for me was staying gluten free when I didn't have a definitive diagnosis... but I made a conscious decision that I was NOT willing to continue to gluten myself for the time I would have to wait to get into a derm. This rash is just far to miserable, and if I could be gluten-free for a while and have even one day of reprieve, it would be worth it! My thinking- get on the books with the dermatologist, go gluten free, and if I am significantly improved or cleared by the time I see the doctor... that is good enough for me, I don't need a skin biopsy to confirm what I already know (the only way gluten-free would clear me is if this IS a DH); if I am still struggling with whether it's really DH or am seriously broke out, I will gluten myself for a week before the appointment.
Up til a few days ago, I would have still said I had little if any improvement. But these last couple of days I really feel like I see a difference. In fact, my daughter just commented that I have NO LESIONS on my arms (a few remain on my elbows) and that is a first in six months!!
Thank you for the skin care tips. I am very fortunate that one of my best friends owns a handmade, natural soap company called Pure Hearts & Clean Hands. I have been using their soaps, laundry detergent, chap sticks, and lotions for a long time (all gluten free). I just added their shampoo bar which is also gluten free in place of my wheat containing salon brand. When the rash started I did take my doctor's advice and tried many lotions... Some I threw away thinking they were making things worse (in retrospect they probably were). But I did keep one around that I used daily that did have some gluten in it so got rid of it.
I was however taking semi regular sea salt and essential oil baths ... Given the iodine in sea salt I am suspect that this wasn't helping my cause at all! Obviously have cut that out also.
Just mentioning Pure Hearts because I can attest to the quality of their products and have visited the shop to verify what is and is not gluten free. All reasonably priced and available online
Thank you for the quick responses... And especially the detailed timeline. Ironically I find hope in the fact that you didn't notice much change until your second month. I am so desperate for relief that not seeing any signs of improvement does have me questioning everything.
I have read the newbie thread and any pertinent posts 30 pages back into the DH forum. I will hop over and check out the linked post as well for sure in case it was not one I have read previously! I have also looked at every pic on the pic bank as well as many others online. As I said mine doesn't look like the severe cases online, but it very much looks like many many posted on here.
As to the symmetry- YES. When the rash first presented it was on my elbows. As a photographer I assumed I had gotten into some poison as I lay on the ground for pictures. It was bumpy and itchy and responded to nothing. Next thing I knew I had a similar rash on both hips. Hand print sized on both sides, like where my hands would lay flat over pockets. These areas also wildly itchy and the lesions that came up and seemed to hang out for a long time were just like little sores. My dr told me they were not from scratching, they were a manifestation of the rash even tho he couldn't tell me exactly what caused it. I had recently had a few spider bites (one on each leg oddly enough) so we thought it may be related to that. Also in regards to typical presentation, I was very interested to read about the purplish marks left behind by lesions. I look like a leopard on both legs, esp the hip/thigh area from these purplish "scars".
Now the rash is on both elbows, the inside of both upper arms (this is the finer red rash with just a few of the sores/lesions), inside of both calves, inside of both thighs just above the knees, and on my butt. Oh an I have a patch under both of my arms, like where my bra goes under my armpit. Incidentally, I have had the issue of these bumps on my rear for years... Not severe but when I would get one it would drive me nuts then eventually go away. May not even be related but in hindsight I am trying to put pieces together.
When it started I was 8 mos into a Daniel Fast for spiritual reasons. This fast includes fruits, vegetables, nuts, whole grains. Basically if it grows from the ground you can have it. I had no bread but did whole wheat pastas at times, some tortillas, etc. Once I broke the fast (6wks after rash started), it did seem to get worse and I definitely know it's worse now than ever. Also this was a time of EXTREME stress. I was going through a ton emotionally. I am not someone who feels particularly anxious or worried about things, but I had enough going on I could see where stress could play a part.
After over 9 mos on the Daniel Fast, I feel like I could pull off a gluten free lifestyle. I also breastfed a baby with dairy intolerance so had to sleuth out the hidden dairy for a year in everything. The restriction and sleuthing don't scare me... But the thought of this NOT being the answer and I have to continue with this nightmare itch literally makes me cry.
I just wish I could see a bit of improvement!
As for the celiac panel- no. I discovered this over the holidays and in desperation went gluten-free almost immediately. I contemplated waiting but knowing it could take months to clear felt like every day was a precious bit of head start. I was gluten-free one week when i saw her. She has never dealt with anyone with DH before but is researching and referring. Spent about an hour with me discussing this, so I feel like she will do whatever we need to do. Do you think I should consider glutening a weekend to be tested? Maybe an up or down yes or no from that would help me to persevere in this?
I think that answered your questions then some. Thank you for quick replies and am very very thankful for these forums!
I have been reading through this forum voraciously... I am absolutely desperate as anyone who has DH would understand!
My back story in as brief as possible:
I have wondered for a few years if I could have a gluten sensitivity just due to the irregularity of my bowels and the occasional not-sure-if-I-am-going-to-make-it-home-from-the-restaurant-feeling. I have talked about this with a few of my gluten-free friends just in passing, suggesting that if I do have GI issues they really are relatively mild and have never been particularly worrisome. Just a little tummy trouble here and there, not any of the other more significant GI related symptoms.
Then the first week of August I began to develop a rash. I have seen multiple physicians (no dermatologist yet, the wait around here is 6-9 mos for a first visit), and all were completely stumped. The rash keeps me awake most nights unless I take something (benadryl, atarax) to aide me in sleeping. While they help me sleep- I still awaken itching through the night, just not as often.
It was during a late night desperate research session that I came across DH and after looking into have become nearly convinced this is what I have. At this point I am almost praying it's what it is because at least then I would have an answer and a treatment. I have said many times that this itching/burning INCESSANTLY makes me feel literally tormented, and I don't think that is too strong of a word at all. I have not seen blisters, but have many of the lesions that appear to arrive post blister. I just don't think my scratching hands allow anything the time to actually develop a blister. I also have a larger, red, slightly raised rash over much of my legs and arms in addition to the lesions. My legs look like a nightmare from all of the places the lesions are, and used to be. Not seeing a bathing suit in 2014's list of predictions. Also- my skin tends to be extremely itchy even in places I am not broke out directly (behind the knees, inside of my forearms, etc)
Anyway, this is my question- I have combed the forums and I KNOW it can take six months, a year, five years for the rash to COMPLETELY go away (if it ever does with risk of accidental glutening or cc'ing). But HOW LONG WILL IT TAKE TO SEE IMPROVEMENT. I have only been gluten-free for about two weeks and just want to see that there is a light at the end of the tunnel. But if I have seen any improvement, it's like 2% and that may just be in my head. The improvement I have seen is I feel like some of the lesions I have that were very deep and had hung around for a while are finally starting to show signs of healing, and perhaps the new lesions are not quite as large around or as deep. In fact one of them has healed and gone away. But the healing of lesions (and then development of new ones) seems to be a part of this cycle so can't attribute it to being gluten-free.
I have seen my dr with this info. She agrees this is likely what we are dealing with, is referring me to a derm, and refuses to prescribe dapsone without a positive dx. I had only hoped to get the meds for a week or two to see if there was an improvement just so in my heart I would KNOW.
If I KNOW this is caused by gluten, you bet your sweet bippy that I will avoid it at ALL COSTS. But a six month "experiment" to sort it out in this misery is a little unthinkable at this point. I KNOW it's early, but I just need to know from some of you when I MIGHT start to see improvement? I am contemplating cutting out iodine also just because it really seems to be a trigger in many, but hate to eliminate everything and find out this isn't even what I am dealing with and have lost all of this time tracking the real culprit. Also read on here maybe I needed to give gluten-free a month to work before also cutting out iodine? That feels like lost time if I am being aggravated by iodine. Would it not be better to cut it out then do a test run in a few months to see if that was exacerbating or if I may be okay to add it back in at that time?
As you can tell, I am feeling quite desperate. I can upload a few pics of the rash if you like- its certainly not as extreme as I have seen but definitely appears to fit the bill from my own research. Doesn't respond to steriods antihistamines, or any other meds we have tried. Also I have gotten all gluten-free lotions and skin products to use now (took me a day or two to realize they were hiding there as well).
Any encouragement you may have is greatly, greatly appreciated. I'm not a baby and have been moved to tears by this stupid rash many times. MANY times.
Thanks for this forum- it's been a lifeline to me these last weeks.