Advice please before I see dr again

[ItchDrivingMeCrazy]

Hi, 

This will be a long post, so apologies in advance. I am really grateful for any advice as I’m at my wits end! 

I have an extremely itchy rash that has developed over the last four months. It started as two small itchy areas on the front of both shins. No visible marks. A rash started to show around two weeks later. Six weeks in I had a large rash on the right shin and a smaller one on the left. Both areas extremely itchy. I also started to find small bumps on other parts of my body. A few on either hand and on my thighs and elbows. 

I contacted my nhs surgery (I’m in the uk) and got an appointment 5 weeks later. 

At the time of the appointment I was going slightly insane. 

The rash had grown and covered half of both shin areas and I had patches on the back of both shins as well. I had a patch on either leg directly adjacent to the knee, and a patch on each thigh. Both arms were intensely itchy, from the hand to the elbow on the inside, and around 10 cm both up and down surrounding the elbow. 

On the leg I have large thick red patches surrounded by new areas of small bumps and red spots. The new areas are even more itchy, but the large patches are still 10/10 itchy. If I scratch I can’t stop. I feel like an addict, I know it’s to no good but I really can’t make myself stop. As I scratch I feel the sensation inside my bones and all the way up inside my pelvis bone. It’s like something I have never felt. The closest way to describe it would be like an unpleasant version of how an orgasm builds inside your body. Pardon for being blunt but it is really hard to describe. 

The doctor took a 30 s look at the shin area on one leg and said that he could see I had normal eczema. No questions, he did not get up from his chair for a closer look, he was not interested to see any other areas, not interested in how it looked when scratched. I told him we that my father has psoriasis and celiac disease and he said it was neither of those. I agree on psoriasis but asked why it could not be DH and he said it manifests differently. I asked why and he said DH is on knees and the bum. Looking online I know that is not the case, so after a while he agreed to send me to a dermatologist. I was also sent for blood tests. He insisted on a strong steroid cream.

Ten days later I saw the dermatologist. Bloods had not been done yet (again 11 days wait for blood appointment) The dermatologist asked more questions. She also looked at my whole body to see where the rash appeared. She did however not leave her chair. Saw the rash only from a meter and a half distance and didn’t feel my skin (I did try to explain how weird it feels in the inflamed areas). The elbows and arms and knees were still as itchy, but no bumps were visible. I had plenty of open wounds and scabs but no visible bumps or redness. When I itches hives pop up everywhere! 

She says to me that she will run some blood tests and if they are not showing anything specific it is just normal dermatitis. She told me to continue the steroid creams every day for two weeks, then every second day for two weeks and then she prescribed a strong anti histamine that I should take for 2 months. I asked for a skin biopsy just in case it was DH. (For clarification - I have never said it is. But since my dad has celiac it feels a good place to start) she said it wasn’t DH. I asked her why and she said it manifests on the bum and knees (incredible! Same answer as dr) I said this was not always the case. She said well I am not a gastronomic..or I don’t actually know the correct word, but gut doctor. I said that I had read 60 % of DH has no gut symptoms, that it manifests in the skin. She said let’s just see what the blood tests show, which I agree on, but I had no follow up appointment until 3 months later. In the end she did book me in for a biopsy to make sure, but that is in 3 months. at one point she told me to just cut out wheat for a few weeks and see if it cleared up, and that didn’t really give me confidence either. All in all I think she wanted me out the door.

I am so sorry for the long post, but this is my issue. My body is obviously under attack somehow. Something is wrong. For four months I have had a growing rash that is more intense each day. I have blisters, large itchy thick leathery patches, my arms are covered in hives when I itch, my legs with swollen blisters. I have also a constant supply of bruises developing and I don’t thing I have caused them by itching. One bruise has been there for 2 months now. I showed the dermatologist and she just said it was from itching.

My rash can be far more serious than DH, but if it’s 3 months to exclude DH, when are they going to look for other possible reasons. 

This is why I thought I could show you my pictures of the patches and the bumps. Please let me know if it looks different from your DH or if you recognise it. 

By now I have had the blood tests back and my Gluten antibody test was negative.   Not even high but right in the middle. (Transglutaminase IgA Ab level)

 Does this mean that I can scratch DH off my list? I have not taken gluten out of my diet. Is there any of you who ate gluten, got a negative blood test and still have DH? 

If so it would help my case with the doctors to use that as an example to push the biopsy forward. If the negative blood test mean I cannot have DH I can tick off that box and keep looking for another reason. 

Any experience you have will help! I am already grateful:-)

I have tons of pictures, but I’m not sure how to add them. Please advice and I’ll attach them.

 

[trents]

You only have a small window of time to edit a post or add pictures so have your pictures ready to attach and start a new post. To attach pics, use the paperclip symbol at the bottom of a new post window where it says, "Drag files here to attach, or choose files . . .".

My understanding is that most people with DH also have gut involvement, though it often the gut involvement doesn't produce significant symptoms, at least until the damage to small bowel villi is in advanced stages.

When you had the celiac antibody testing done were you still eating regular amounts of gluten?

Not every dermatologist knows how to correctly do a biopsy to test for DH. Samples need to be taken from between bumps, not on them.

You might also try a low iodine diet to see if there is improvement. Iodine exacerbates DH.

[Scott Adams]

It is unfortunate that your doctors seem to resist a blood screening for celiac disease...just the fact that your father has it should be enough for them to screen you--first degree relatives should always also be screened for celiac disease an an annual basis.

This article may also be helpful:

 

[ItchDrivingMeCrazy]

Hi again. Thanks for your replies above.

Scott: I've read through the material and it is really helpful. There are some good questions that I can raise when I see a health professional next.

Trent: Yes I was eating gluten when I did the test. I have always been told by my dad not to cut it out on my own, but to go through the proper channels. That is the reason I was wondering whether there is still a possibility to have DH with a negative test. The article that Scott posted indicated that I should have the dialysis to be certain. I would like to cut out a whole lot of options like gluten and iodine etc - just to see if it helps with the darn itch 🙂 But I am worried that I miss something serious just in case my rash is caused by another disease or even kidney/liver issues.... and therefor I wanted more facts before starting experimenting on my own.

I have tried, but have not been able to upload photos, so I've created an album on Flickr instead. If anyone who has experienced DH could please take a look and see if it looks similar, that would be amazing.

Since it will be three months until I can take this further with a doctor I am desperate to find out. If I could rule out DH that would be one step on the way. I cannot afford a private appointment really, but if my rash is recognised by others and there is a strong cause I could at least way that option.

https://flic.kr/ps/43gh3j

Again I'm super grateful for any input 🙂

 

 

[Scott Adams]

I'm not a dermatologist, but the images you posted certainly look like they might be DH. My DH presented with tiny hard, clear blisters, which were the most itchy areas.

[ItchDrivingMeCrazy]

1 minute ago, Scott Adams said:

I'm not a dermatologist, but the images you posted certainly look like they might be DH. My DH presented with tiny hard, clear blisters, which were the most itchy areas.

Thanks for taking a look  Scott 🙂 

Did you ever experience hives when itching?

[Scott Adams]

I had red elevated skin patches which were where the blisters popped up. 

[ItchDrivingMeCrazy]

1 minute ago, Scott Adams said:

I had red elevated skin patches which were where the blisters popped up. 

That sounds exactly like my legs. Then hives on my arms. The hives are the main thing that I can't find when reading other people's stories. Thanks for your reply.

[ernieb]

It is maddening when apparent competent physicians fail to diagnose an obvious  important issue such as itching.  You clearly are gluten sensitive which manifests as DH.  

I was diagnosed at age 70 with DH and placed on Dapsone 50 mg daily.  Itch solved.  I call dapsone a wicked drug as it lowers your red blook count, etc. 

However, I accept the risks so I can sleep at night and enjoy life.

Ernie

[DebJ14]

It is very possible to have multiple things going on at once.  I was diagnosed with DH as a teen.  Every year when school started this horrible itchy, blistery rash appeared on my arms.  The blisters would break and it would crust over.  Looking back I can see how I did it to myself.  My parents gave me $1.00 for lunch every day.  I spent 10 cents on an Italian roll and a pat of butter and saved the 90 cents to spend on the weekend on records, make up etc..  Our family doctor forwarded the letter from the dermatologist to my parents, along with a prescription for a steroid cream.  No mention of gluten.  The attached lab report on the biopsy said it was DH. 

Fast forward to my college years.  I was eating much less gluten as I never got up early enough for breakfast and ate salad for lunch every day and just meat and veggies for dinner and I did not have the DH rash.  Snacks were usually potato chips or Fritos.  When I ate pizza I would get a debilitating migraine, but no rash.  The neurologist treating my migraines never mentioned gluten!

When I went to work at a bank my DH came roaring back.  My hands and arms were covered in blisters and I had to wear gloves at work.  Once again, it was self inflicted as I was eating subs and other sandwiches with my co-workers every day.  When I quit the job because of a difficult pregnancy I no longer ate that for lunch.

As a young adult I had issues with my pregnancies.  Instead of getting magnesium for my pre-eclampsia I was prescribed phenobarbitol.  My first child was born addicted.  Both children were very low birth weight babies.  Instead of looking into it, the OB and pediatrician said it was my fault for not following the diet they recommended.   Unfortunately, I did follow it to the max.  Lots of Raisin Bran or Shredded Wheat for breakfast, salads for lunch and thankfully, just meat and veggies for dinner.

Fast forward to shortly after my second child was born.  My oldest (age 4) came down with strep throat and of course I got it too.  After it cleared up, I developed red, flaky, itchy patches all over, including my face.  That dermatologist diagnosed me with Guttae psoraisis, which is common after strep.  So, steroid cream again.  This time the steroid cream worked well.  But, the psoraisis returned every time my kids or I got strep.

Finally, at age 54 I was diagnosed with Celiac disease.  My rashes cleared up and since my immune system improved and I was no longer fighting gluten all the time I never caught strep again.  One child, who was 30 also tested positive for celiac and the son who was 26 at the time was diagnosed with NSGS.  Both grandchildren, who were toddlers, tested positive for celiac disease too.  Thankfully, no one has had any strep, that we know of, in 16.5 years!

But, during the pandemic I developed contact dermatitis under my arms.  Deodorants I used for years immediately caused a bright red rash and burned. After a short course of steroid cream it went away.   The dermatologist recommended I try Almay, which was the worst of the lot and caused an immediate, and the worst reaction of all.  I happened on Vanicream deodorant and it is the only one I can use without triggering the dermatitis. 

In 2022 I developed a horrible itchy rash on my left shin and the top of my foot along with a couple of guttae psoraisis like lesions on the back of my left leg and the front of my right leg and a couple in my scalp. Clearly, 2 different rashes.  A different dermatologist diagnosed me with both exczema and  guttae psoraisis, even though I did not have strep and had no known exposure.  More steroid creams were prescribed.  The psoraisis spots are lingering stubbornly, but have not spread.  The exczema is another story.  It would clear up completely and as soon as the steroids were stopped, it came roaring back worse than before.  I have changed laundry soap, carefully kept a food log etc.  The one thing I have discovered is that Gladskin provides immediate itch relief, which gives it my skin a fighting  chance to heal. 

While on vacation in Mexico earlier this year I realized that I forgot both my steroid cream and my Gladskin. I thought I would go nuts from the itching and scratching.   The hotel doctor told me to buy Gelmicin cream, which is OTC in Mexico, but prescription in the US.  It works better than plain steroid creams.  It contains Betamethasone (steroid) Gentamicin (antibiotic) and Clotrimazol (anti fungal).  The doctor said it was getting infected from all the scratching I was doing.  This has been a game changer for me and I  actually go a fairly long time without a flare up of the exczema, even though the psoraisis spots remain.  

I have been accidentally glutened 3 times over the past 16 years and every time the DH returned, along with vomiting and diarrhea and the feeling that I was hit by a truck.  Thankfully, the migraines never returned, but the doctor puts that down to improving my nutrient status with Magnesium and B vitamins.

 

 

[ItchDrivingMeCrazy]

On 11/13/2023 at 6:06 PM, DebJ14 said:

It is very possible to have multiple things going on at once.  I was diagnosed with DH as a teen.  Every year when school started this horrible itchy, blistery rash appeared on my arms.  The blisters would break and it would crust over.  Looking back I can see how I did it to myself.  My parents gave me $1.00 for lunch every day.  I spent 10 cents on an Italian roll and a pat of butter and saved the 90 cents to spend on the weekend on records, make up etc..  Our family doctor forwarded the letter from the dermatologist to my parents, along with a prescription for a steroid cream.  No mention of gluten.  The attached lab report on the biopsy said it was DH. 

Fast forward to my college years.  I was eating much less gluten as I never got up early enough for breakfast and ate salad for lunch every day and just meat and veggies for dinner and I did not have the DH rash.  Snacks were usually potato chips or Fritos.  When I ate pizza I would get a debilitating migraine, but no rash.  The neurologist treating my migraines never mentioned gluten!

When I went to work at a bank my DH came roaring back.  My hands and arms were covered in blisters and I had to wear gloves at work.  Once again, it was self inflicted as I was eating subs and other sandwiches with my co-workers every day.  When I quit the job because of a difficult pregnancy I no longer ate that for lunch.

As a young adult I had issues with my pregnancies.  Instead of getting magnesium for my pre-eclampsia I was prescribed phenobarbitol.  My first child was born addicted.  Both children were very low birth weight babies.  Instead of looking into it, the OB and pediatrician said it was my fault for not following the diet they recommended.   Unfortunately, I did follow it to the max.  Lots of Raisin Bran or Shredded Wheat for breakfast, salads for lunch and thankfully, just meat and veggies for dinner.

Fast forward to shortly after my second child was born.  My oldest (age 4) came down with strep throat and of course I got it too.  After it cleared up, I developed red, flaky, itchy patches all over, including my face.  That dermatologist diagnosed me with Guttae psoraisis, which is common after strep.  So, steroid cream again.  This time the steroid cream worked well.  But, the psoraisis returned every time my kids or I got strep.

Finally, at age 54 I was diagnosed with Celiac disease.  My rashes cleared up and since my immune system improved and I was no longer fighting gluten all the time I never caught strep again.  One child, who was 30 also tested positive for celiac and the son who was 26 at the time was diagnosed with NSGS.  Both grandchildren, who were toddlers, tested positive for celiac disease too.  Thankfully, no one has had any strep, that we know of, in 16.5 years!

But, during the pandemic I developed contact dermatitis under my arms.  Deodorants I used for years immediately caused a bright red rash and burned. After a short course of steroid cream it went away.   The dermatologist recommended I try Almay, which was the worst of the lot and caused an immediate, and the worst reaction of all.  I happened on Vanicream deodorant and it is the only one I can use without triggering the dermatitis. 

In 2022 I developed a horrible itchy rash on my left shin and the top of my foot along with a couple of guttae psoraisis like lesions on the back of my left leg and the front of my right leg and a couple in my scalp. Clearly, 2 different rashes.  A different dermatologist diagnosed me with both exczema and  guttae psoraisis, even though I did not have strep and had no known exposure.  More steroid creams were prescribed.  The psoraisis spots are lingering stubbornly, but have not spread.  The exczema is another story.  It would clear up completely and as soon as the steroids were stopped, it came roaring back worse than before.  I have changed laundry soap, carefully kept a food log etc.  The one thing I have discovered is that Gladskin provides immediate itch relief, which gives it my skin a fighting  chance to heal. 

While on vacation in Mexico earlier this year I realized that I forgot both my steroid cream and my Gladskin. I thought I would go nuts from the itching and scratching.   The hotel doctor told me to buy Gelmicin cream, which is OTC in Mexico, but prescription in the US.  It works better than plain steroid creams.  It contains Betamethasone (steroid) Gentamicin (antibiotic) and Clotrimazol (anti fungal).  The doctor said it was getting infected from all the scratching I was doing.  This has been a game changer for me and I  actually go a fairly long time without a flare up of the exczema, even though the psoraisis spots remain.  

I have been accidentally glutened 3 times over the past 16 years and every time the DH returned, along with vomiting and diarrhea and the feeling that I was hit by a truck.  Thankfully, the migraines never returned, but the doctor puts that down to improving my nutrient status with Magnesium and B vitamins.

 

 

Thanks! This makes so much sense. 

My dad has mentioned to me that his Psoriasis and migraines are much better since he was diagnosed with Coeliac Disease, and we always assumed that it was partly because his body is now much healthier. I know that my nephew who also has Coeliac Disease suffered from migraines as a child. 

I have now managed to book a time for a skin biopsy, and have decided to quit gluten after the biopsy - even if the results are negative. I still think there might be other issues causing it, so I will go back to the original doctor and ask for further blood tests. Just in case it could be related to mineral deficiencies, or something similar. I have also had advice on the original tests, so I no longer fear cancer, kidney or liver issues. 

I know how to ensure a healthy gluten-free diet, so at this point, I just really want to cut it out. But I will go ahead and eat it until after they check the skin. 

My rash has grown in spite of the steroids, and my skin has gotten incredibly sore. I have therefore stopped using the steroid cream altogether.

The doctor prescribed Fexofenadine Hydrochloride - I'm allowed 180mg a day and that gives me around 5 hours of relief 🙂 It's amazing how calming those hours have been. 

[ItchDrivingMeCrazy]

On 11/9/2023 at 6:59 PM, ernieb said:

It is maddening when apparent competent physicians fail to diagnose an obvious  important issue such as itching.  You clearly are gluten sensitive which manifests as DH.  

I was diagnosed at age 70 with DH and placed on Dapsone 50 mg daily.  Itch solved.  I call dapsone a wicked drug as it lowers your red blook count, etc. 

However, I accept the risks so I can sleep at night and enjoy life.

Ernie

I would sign up for any drug - wicked or not - if it took the itch away 😉 Not sure if my doctor would allow it unless the biopsy comes out with a clear positive result. Which makes sense I guess, I do want to find out the cause and treat it.

I do think it is the gluten causing this though, so I will cut it out after the skin biopsy. 

Thanks for your reply and I'm glad to hear there is an end to it

[knitty kitty]

@ItchDrivingMeCrazy,

Yes, looks like more than one thing going on, DH and Vitamin C deficiency (Scurvy). 

The nonstop itching could be peripheral neuropathy from deficiencies in the B Complex vitamins, especially B12 Cobalamine.   

I had lots of vitamin deficiencies and DH going on, but I remember the itching never stopped and the bruising.  Both resolved by supplementing Vitamin C and the B Complex vitamins.   

This article has some pictures of a patient with Scurvy.  

Petechiae, Purpura, and a Pandemic: A Recipe for Scurvy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667612/

Check with your doctor before starting vitamin supplementation.  Blood tests won't be accurate if you take supplements eight to twelve weeks prior to testing.  

Hope this helps!

[trents]

2 hours ago, ItchDrivingMeCrazy said:

I have now managed to book a time for a skin biopsy, and have decided to quit gluten after the biopsy - even if the results are negative.

@ItchDrivingMeCrazy, Not every dermatologist knows how to correctly biopsy for DH. The samples should be taken between the bumps, not on them. You might feel him/her out for their approach in this regard when you go for the appointment. Also, you might look into a medication known as Dapsone. It seems to be the only thing that works for many who suffer from DH since glutening from cross contamination is so hard to totally avoid. DH suffers seem to be very sensitive in that sense.

Edited November 20, 2023 by trents

[ItchDrivingMeCrazy]

3 hours ago, knitty kitty said:

@ItchDrivingMeCrazy,

Yes, looks like more than one thing going on, DH and Vitamin C deficiency (Scurvy). 

The nonstop itching could be peripheral neuropathy from deficiencies in the B Complex vitamins, especially B12 Cobalamine.   

I had lots of vitamin deficiencies and DH going on, but I remember the itching never stopped and the bruising.  Both resolved by supplementing Vitamin C and the B Complex vitamins.   

This article has some pictures of a patient with Scurvy.  

Petechiae, Purpura, and a Pandemic: A Recipe for Scurvy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667612/

Check with your doctor before starting vitamin supplementation.  Blood tests won't be accurate if you take supplements eight to twelve weeks prior to testing.  

Hope this helps!

Thanks Knitty Kitty. That is an article I had NOT come across 🙂

I had planned to ask my doctor for a blood test to check for any deficiencies. I had low D vitamin in 2017 so that was why I started to think it might be a deficiency. I eat quite well but the D vitamin is sun and I guess I'm not always outdoors that much. I will ask if they could please widen it and add C, B and B12 to the vitamins and minerals I'd already thought of. Super appreciate all the help.

[ItchDrivingMeCrazy]

1 hour ago, trents said:

@ItchDrivingMeCrazy, Not every dermatologist knows how to correctly biopsy for DH. The samples should be taken between the bumps, not on them. You might feel him/her out for their approach in this regard when you go for the appointment. Also, you might look into a medication known as Dapsone. It seems to be the only thing that works for many who suffer from DH since glutening from cross contamination is so hard to totally avoid. DH suffers seem to be very sensitive in that sense.

Thanks, Trent for all your advice.

I saw an article on this site that was helpful in explaining how difficult it is to get the biopsy right. It's a difficult balance though to ask health professionals questions about their procedure and experience. I find that I have annoyed them in the past just by saying that DH does not always manifest on the bum.. I will do my best to ask polite questions. Fingers crossed!

I have read about Dapsone and if my Biopsy results are positive it's the first thing I'll ask for. 

[hayley3]

I know this is a late comment to this post but I hope you have something figured out by now.  All that bruising looks bad.

[ItchDrivingMeCrazy]

Hi 🙂

Thanks for your message Hayley3. I have not figured out the reason for my rash yet, but thankfully it is much much better now. I started 35g of cortisol a day in December, and it is tapering off until at some point in mid-March. 

I was also very low in vitamin D and have been taking supplements to raise those levels.

I'm so grateful for not itching. I stopped all gluten (and I have been super good, messed up only twice that I know of) straight after the biopsy in October. It came back negative, but I am not confident about that answer. The nurse did the biopsy on my back (she said it had to be there as the back healed better than the legs.) But at that time I had no blisters or rash on my back - only large hives. I asked her to take a photograph of the area as I couldn't see it, and you can see on the photograph that both of the circles she marked out are on top of swollen red hive skin i.e. not healthy skin adjacent to a lesion.

The dermatologist I saw after the results came in,  says that they can say with 100% accuracy that I have normal eczema  as the biopsies are never wrong 🙂. I have never had dry skin in my life, no hay fever and the itch I experienced was deep inside - not on the skin surface...so I don't think it is eczema but on the other hand, I don't care to argue any more as long as it stays down! Finger crossed.

At the moment I am not sure if it's the no-gluten diet, the Vitamin D supplements or the cortisol, but I feel like I'm 10 years younger. I have so much more energy and I get things done that have stayed on my long to-do lists for years. I know I should probably do a gluten challenge after the cortisol is finished but I just don't want to rock the boat 🙂 

[hayley3]

35 minutes ago, ItchDrivingMeCrazy said:

Hi 🙂

Thanks for your message Hayley3. I have not figured out the reason for my rash yet, but thankfully it is much much better now. I started 35g of cortisol a day in December, and it is tapering off until at some point in mid-March. 

I was also very low in vitamin D and have been taking supplements to raise those levels.

I'm so grateful for not itching. I stopped all gluten (and I have been super good, messed up only twice that I know of) straight after the biopsy in October. It came back negative, but I am not confident about that answer. The nurse did the biopsy on my back (she said it had to be there as the back healed better than the legs.) But at that time I had no blisters or rash on my back - only large hives. I asked her to take a photograph of the area as I couldn't see it, and you can see on the photograph that both of the circles she marked out are on top of swollen red hive skin i.e. not healthy skin adjacent to a lesion.

The dermatologist I saw after the results came in,  says that they can say with 100% accuracy that I have normal eczema  as the biopsies are never wrong 🙂. I have never had dry skin in my life, no hay fever and the itch I experienced was deep inside - not on the skin surface...so I don't think it is eczema but on the other hand, I don't care to argue any more as long as it stays down! Finger crossed.

At the moment I am not sure if it's the no-gluten diet, the Vitamin D supplements or the cortisol, but I feel like I'm 10 years younger. I have so much more energy and I get things done that have stayed on my long to-do lists for years. I know I should probably do a gluten challenge after the cortisol is finished but I just don't want to rock the boat 🙂 

It looks like you have two things going on, well 3 with the bruising.  I had my rashes biopsied previously and they came back all sorts of strange things.  Finally I went in there asking for a celiac biopsy..Of course they wouldn't actually do the celiac biopsy which is taking an adjacent sample but they did biopsy it..and by some miracle it came back dermatitis herpetiformis.  I think the other rashes were the same as the one that came back as dermatitis herpetiformis, except it was on my butt (mind you only the right side) and I had a bad episode of GI issues.  The back of your leg looks just like my rashes, but the medical people think it can't be anyplace but where google says it is.  I remember having it behind my knees, elbows and fingers.  Going gluten free delayed my diagnosis though, I was also doing water fasting which supposedly heals the stomach.

[ItchDrivingMeCrazy]

It would be great to have a definite reason. I'm glad you know how to treat yours.

I still get the bruising. The dermatologist says it's from the itching. I hope that she is right (everyone must be right about something 🙂

My whole body was under attack at its worst. My arms and legs were so swollen I couldn't bend them! I ended up bed-bound for about three weeks. Terrible and very scary. I think that whatever the original rash is, the vitamin D deficiency left my body a little weak in defence 🙂. Hence I guess all the swelling and infection didn't allow for much sense to come out of the biopsy. 

The fear is that it comes back after Cortisol is finished. But I'm trying to ignore that possibility for now. Part of me is thinking though, maybe I should be looking at all of this from another angle. If the itch had not driven me insane, I would have never known how unhealthy I must have been, and probably for a long time. The diet I'm eating now has awoken my brain. I hope that does not sound weird.

[ernieb]

On 11/20/2023 at 6:39 AM, ItchDrivingMeCrazy said:

I would sign up for any drug - wicked or not - if it took the itch away 😉 Not sure if my doctor would allow it unless the biopsy comes out with a clear positive result. Which makes sense I guess, I do want to find out the cause and treat it.

I do think it is the gluten causing this though, so I will cut it out after the skin biopsy. 

Thanks for your reply and I'm glad to hear there is an end to it

Biopsies will be negative because docs are looking for celiac disease.  Having dermatitis herpetiformis could only mean that you are gluten sensitive and not offically celiac .  If so you are going to itch when exposed to gluten

[DebJ14]

1 hour ago, hayley3 said:

It looks like you have two things going on, well 3 with the bruising.  I had my rashes biopsied previously and they came back all sorts of strange things.  Finally I went in there asking for a celiac biopsy..Of course they wouldn't actually do the celiac biopsy which is taking an adjacent sample but they did biopsy it..and by some miracle it came back dermatitis herpetiformis.  I think the other rashes were the same as the one that came back as dermatitis herpetiformis, except it was on my butt (mind you only the right side) and I had a bad episode of GI issues.  The back of your leg looks just like my rashes, but the medical people think it can't be anyplace but where google says it is.  I remember having it behind my knees, elbows and fingers.  Going gluten free delayed my diagnosis though, I was also doing water fasting which supposedly heals the stomach.

When I had my worst outbreaks of dermatitis herpetiformis it was on my upper arms from elbow to shoulder.  I never wore sleeveless or short sleeves to school, even in hot weather.  I always had to have at least a 3/4 sleeve cotton shirt under my sweaters to keep the weeping blisters from leaking through the sweater. 

A few years later I had a weird bout on the palms of my hands.  It lasted a couple years and I went through tube after tube of steroid cream.  The biopsy again said dermatitis herpetiformis, but the second dermatologist also failed to mention gluten and seemed to think it was a steroid deficiency.

[hayley3]

2 hours ago, ItchDrivingMeCrazy said:

It would be great to have a definite reason. I'm glad you know how to treat yours.

I still get the bruising. The dermatologist says it's from the itching. I hope that she is right (everyone must be right about something 🙂

My whole body was under attack at its worst. My arms and legs were so swollen I couldn't bend them! I ended up bed-bound for about three weeks. Terrible and very scary. I think that whatever the original rash is, the vitamin D deficiency left my body a little weak in defence 🙂. Hence I guess all the swelling and infection didn't allow for much sense to come out of the biopsy. 

The fear is that it comes back after Cortisol is finished. But I'm trying to ignore that possibility for now. Part of me is thinking though, maybe I should be looking at all of this from another angle. If the itch had not driven me insane, I would have never known how unhealthy I must have been, and probably for a long time. The diet I'm eating now has awoken my brain. I hope that does not sound weird.

Wow, can't believe they can't figure that out with the swelling.  I have a rare disorder called Erythromelalgia, and it causes blood pooling in the extremities...it took me years to diagnose myself because the doctors were clueless.

[knitty kitty]

@ItchDrivingMeCrazy and @hayley3,

Very curious if either of you had a vaccination for Covid-19 prior to your rashes and itching started.  

I've found some interesting literature where a reactivation of certain viruses (chicken pox (shingles), herpetic viruses, Epstein-Barr virus) have been reactivated after inoculation with Covid vaccines may occur.  Erythromelalgia may occur as well.

Just curious,

knitty kitty

[Scott Adams]

Can you post a link? I've not heard of any "reactivation" of those viruses caused by covid vaccines.