Need Some Help/opinions?

[oldskool]

Hi, glad I found this forum.

When I was around 10 months old I had a horrible rash on my butt and legs that was red, raised and painful (so my mom tells me). I also had diarreah and stopped growing and gaining weight. The doctor thought it was a gluten reaction, took me off all gluten for 6-8 months and I was told that the symptoms, rash/stool issue/growth all got better.

The doctor assumed Celiac and diagnosed me with it. No biopsy was performed (I don't know if they did them back then this would have been late 70's).

Anyways, I was always shorter and had a late onset of puberty but ended up catching up to my bone development for my age at around 15 or so. (Now stand the same height as my Dad - 5'10).

Throughout childhood I always had some issues with diarreah, but nothing that wouldn't resolve on its own in a few days or weeks depending.

My mom told me that the doctor started to introduce wheat and gluten foods back into my diet when I was around 2 years old and I did not react so he felt I could continue with a normal diet and wanted to see me regularly for the fist 10 years of my life to monitor bone development and growth etc. Everything seemed to pan out ok.

Fast forward to today, 29 years of age, healthy male for the most part however, last January I was under a lot stress and experienced a traumatic event which triggered this outbreak on my face that was the weirdest thing, it was characterized by:

- abrupt onset

- extremely painful

- burning and stinging sensation

- litlte lesions that looked almost like flat acne that sort of hardened and scabbed over after a few days but then popped up in other places.

- The lesions and pain were exactly symmetrical on both sides of my face (weird).

- I have what felt like blisters almost under my eyes (2 under each eye in exactly the same place on both sides of my face).

The doctors were unsure and gave me Minocycline and a topical antibiotic which helped clear it for a few weeks then it came back but to a lesser extent yet still lingered.

The blisters under the eyes remained and would start to go then come back then surface again, then begin to fade - back and forth for several months. Then the lesions all over the face (symmetrical again) started in the spring, both sides, stinging and burning, almost feels like wind burn. I was now on Doxycycline and the Derm switched me over to Bactrim DS (did not help much more). I then went on Accutane @ 40mg as he felt it was peraphs inflammatory skin disorder similar to acne. Still to this day, one year later I am dealing with this persistint stinging and burning in my skin and what feels like little blisters but they never surface fully surface as they did the first time (likely due to the meds I am on). But they never fully go away and always return or surface in the exact same area and are so painful, the worst pain I have ever felt. I am on Bactrim, Accutne and Indomathecin (a strong anti-inflammatory) as well as using topical Bactroban to the areas when they flare and get sore. The pain is periodic, comes and goes, sometimes lasting hours, or days.

Does this sound like it could be a case of Dermatitis Herpetiformis?

I had no idea about Celiac disease until I started searching around and told my mom about what I was experiencing and she informed me that the docs thought what I had was Celiac when I was a baby. I never knew the name of what they thought it was, it was over 20 years ago now.

So now I am thinking perhaps this is what it is? Maybe the traumatic event triggerd the symptoms to come back? (As I read this happens in those with Celiac who do not follow the proper diet._

I see a gastro specialist on Monday and I am going to see if I can get that endoscopic biopsy done.

If this is the cause I will be forever greatful because I know I can treat it with a diet. Not that it would be good to have this, but not knowing and having no treatment for something that is incredibly painful is worse imo.

Sorry for the babble, feedback and opinions welcome! I know nothing much about this DH condition and cannot find much on the internet so am hoping to gain some possible insght.

THANKS!

- extremely painful

[YoloGx]

Hi, glad I found this forum.

When I was around 10 months old I had a horrible rash on my butt and legs that was red, raised and painful (so my mom tells me). I also had diarreah and stopped growing and gaining weight. The doctor thought it was a gluten reaction, took me off all gluten for 6-8 months and I was told that the symptoms, rash/stool issue/growth all got better.

The doctor assumed Celiac and diagnosed me with it. No biopsy was performed (I don't know if they did them back then this would have been late 70's).

Anyways, I was always shorter and had a late onset of puberty but ended up catching up to my bone development for my age at around 15 or so. (Now stand the same height as my Dad - 5'10).

Throughout childhood I always had some issues with diarreah, but nothing that wouldn't resolve on its own in a few days or weeks depending.

My mom told me that the doctor started to introduce wheat and gluten foods back into my diet when I was around 2 years old and I did not react so he felt I could continue with a normal diet and wanted to see me regularly for the fist 10 years of my life to monitor bone development and growth etc. Everything seemed to pan out ok.

Fast forward to today, 29 years of age, healthy male for the most part however, last January I was under a lot stress and experienced a traumatic event which triggered this outbreak on my face that was the weirdest thing, it was characterized by:

- abrupt onset

- extremely painful

- burning and stinging sensation

- litlte lesions that looked almost like flat acne that sort of hardened and scabbed over after a few days but then popped up in other places.

- The lesions and pain were exactly symmetrical on both sides of my face (weird).

- I have what felt like blisters almost under my eyes (2 under each eye in exactly the same place on both sides of my face).

The doctors were unsure and gave me Minocycline and a topical antibiotic which helped clear it for a few weeks then it came back but to a lesser extent yet still lingered.

The blisters under the eyes remained and would start to go then come back then surface again, then begin to fade - back and forth for several months. Then the lesions all over the face (symmetrical again) started in the spring, both sides, stinging and burning, almost feels like wind burn. I was now on Doxycycline and the Derm switched me over to Bactrim DS (did not help much more). I then went on Accutane @ 40mg as he felt it was peraphs inflammatory skin disorder similar to acne. Still to this day, one year later I am dealing with this persistint stinging and burning in my skin and what feels like little blisters but they never surface fully surface as they did the first time (likely due to the meds I am on). But they never fully go away and always return or surface in the exact same area and are so painful, the worst pain I have ever felt. I am on Bactrim, Accutne and Indomathecin (a strong anti-inflammatory) as well as using topical Bactroban to the areas when they flare and get sore. The pain is periodic, comes and goes, sometimes lasting hours, or days.

Does this sound like it could be a case of Dermatitis Herpetiformis?

I had no idea about Celiac disease until I started searching around and told my mom about what I was experiencing and she informed me that the docs thought what I had was Celiac when I was a baby. I never knew the name of what they thought it was, it was over 20 years ago now.

So now I am thinking perhaps this is what it is? Maybe the traumatic event triggerd the symptoms to come back? (As I read this happens in those with Celiac who do not follow the proper diet._

I see a gastro specialist on Monday and I am going to see if I can get that endoscopic biopsy done.

If this is the cause I will be forever greatful because I know I can treat it with a diet. Not that it would be good to have this, but not knowing and having no treatment for something that is incredibly painful is worse imo.

Sorry for the babble, feedback and opinions welcome! I know nothing much about this DH condition and cannot find much on the internet so am hoping to gain some possible insght.

THANKS!

- extremely painful

It sounds very much like DH.

I think the same thing happened to me but my mother didn't tell me.

If you can afford it, get it checked out. They actually can tell from the lesions so its a lot less invasive than an endoscopy.

DH and celiac are closely intertwined and virtually the same disease.

They say now no one ever gets over celiac. However you probably had less of a problem in your early years with it due to being taken off gluten initially.

Be thankful you are catcing it now rather than have it ride underneath undrmining your nervous sytem, potentially leading to cancer etc. etc.

Check out more here on this site.

If you do have the celiac (which is very likely) you have to avoid it in everything, including supplements, shampoos, cat and dog food, old wooden spoons and cutting boards as well as cast iron pans or anything with food cooked onto the sides. Its a pain in the ass but once you get used to it it isn't so bad. You will probably live to a ripe old age without the gluten and be much healthier in the bargain.

Yolo

[ravenwoodglass]

This does sound a lot like DH. Not all dermatologists are real familiar with it. Mine was diagnsoed as 12 month a year poison ivy for my entire childhood. A savvy dermatolagist can biopsy the area next to an active lesion for a positive diagnosis of DH.

It is a good idea to perhaps see a GI, do not go gluten free until after you have done all the testing that you want to have done. But after that testing do give the diet a try for a couple of months at least to know for sure. Not all people with DH have severe intestinal damage but they do still have celiac. For some the intestinal part of the illness can take years to become severe meanwhile the autoantibodies are attacking other parts of the body like brain and joints and livers etc.

You have found a good place for info and support, welcome.

[dbmamaz]

Just wanted to say I was also off of wheat and milk as an infant due to D, and my ped said it was just an allergy and put me back on in a few months. I'm 4 inches shorter than my mother, and my sister is in between our hights, even tho my father isnt short - I really think theres a relationship there.

I never had problems with rashes, but had a lot of intestinal trouble. I went off wheat and milk recently (at 42) hoping i'd feel healthier in general, but didnt realize then that it could be celiac. I had the test 6 weeks later, and it came back negative - but i feel so much better off of gluten, I'm not going back.

So, even if your scope was negative, that doesnt mean that going off gluten might fix your rash. Just do all the testing you can first, before you try a diet trial.

Good luck getting to the bottom of this

[gfcookie]

Hi, glad I found this forum.

When I was around 10 months old I had a horrible rash on my butt and legs that was red, raised and painful (so my mom tells me). I also had diarreah and stopped growing and gaining weight. The doctor thought it was a gluten reaction, took me off all gluten for 6-8 months and I was told that the symptoms, rash/stool issue/growth all got better.

The doctor assumed Celiac and diagnosed me with it. No biopsy was performed (I don't know if they did them back then this would have been late 70's).

Anyways, I was always shorter and had a late onset of puberty but ended up catching up to my bone development for my age at around 15 or so. (Now stand the same height as my Dad - 5'10).

Throughout childhood I always had some issues with diarreah, but nothing that wouldn't resolve on its own in a few days or weeks depending.

My mom told me that the doctor started to introduce wheat and gluten foods back into my diet when I was around 2 years old and I did not react so he felt I could continue with a normal diet and wanted to see me regularly for the fist 10 years of my life to monitor bone development and growth etc. Everything seemed to pan out ok.

Fast forward to today, 29 years of age, healthy male for the most part however, last January I was under a lot stress and experienced a traumatic event which triggered this outbreak on my face that was the weirdest thing, it was characterized by:

- abrupt onset

- extremely painful

- burning and stinging sensation

- litlte lesions that looked almost like flat acne that sort of hardened and scabbed over after a few days but then popped up in other places.

- The lesions and pain were exactly symmetrical on both sides of my face (weird).

- I have what felt like blisters almost under my eyes (2 under each eye in exactly the same place on both sides of my face).

The doctors were unsure and gave me Minocycline and a topical antibiotic which helped clear it for a few weeks then it came back but to a lesser extent yet still lingered.

The blisters under the eyes remained and would start to go then come back then surface again, then begin to fade - back and forth for several months. Then the lesions all over the face (symmetrical again) started in the spring, both sides, stinging and burning, almost feels like wind burn. I was now on Doxycycline and the Derm switched me over to Bactrim DS (did not help much more). I then went on Accutane @ 40mg as he felt it was peraphs inflammatory skin disorder similar to acne. Still to this day, one year later I am dealing with this persistint stinging and burning in my skin and what feels like little blisters but they never surface fully surface as they did the first time (likely due to the meds I am on). But they never fully go away and always return or surface in the exact same area and are so painful, the worst pain I have ever felt. I am on Bactrim, Accutne and Indomathecin (a strong anti-inflammatory) as well as using topical Bactroban to the areas when they flare and get sore. The pain is periodic, comes and goes, sometimes lasting hours, or days.

Does this sound like it could be a case of Dermatitis Herpetiformis?

I had no idea about Celiac disease until I started searching around and told my mom about what I was experiencing and she informed me that the docs thought what I had was Celiac when I was a baby. I never knew the name of what they thought it was, it was over 20 years ago now.

So now I am thinking perhaps this is what it is? Maybe the traumatic event triggerd the symptoms to come back? (As I read this happens in those with Celiac who do not follow the proper diet._

I see a gastro specialist on Monday and I am going to see if I can get that endoscopic biopsy done.

If this is the cause I will be forever greatful because I know I can treat it with a diet. Not that it would be good to have this, but not knowing and having no treatment for something that is incredibly painful is worse imo.

Sorry for the babble, feedback and opinions welcome! I know nothing much about this DH condition and cannot find much on the internet so am hoping to gain some possible insght.

THANKS!

- extremely painful

have you been checked for lupus????

[ccrrgn]

Hi, glad I found this forum.

When I was around 10 months old I had a horrible rash on my butt and legs that was red, raised and painful (so my mom tells me). I also had diarreah and stopped growing and gaining weight. The doctor thought it was a gluten reaction, took me off all gluten for 6-8 months and I was told that the symptoms, rash/stool issue/growth all got better.

The doctor assumed Celiac and diagnosed me with it. No biopsy was performed (I don't know if they did them back then this would have been late 70's).

Anyways, I was always shorter and had a late onset of puberty but ended up catching up to my bone development for my age at around 15 or so. (Now stand the same height as my Dad - 5'10).

Throughout childhood I always had some issues with diarreah, but nothing that wouldn't resolve on its own in a few days or weeks depending.

My mom told me that the doctor started to introduce wheat and gluten foods back into my diet when I was around 2 years old and I did not react so he felt I could continue with a normal diet and wanted to see me regularly for the fist 10 years of my life to monitor bone development and growth etc. Everything seemed to pan out ok.

Fast forward to today, 29 years of age, healthy male for the most part however, last January I was under a lot stress and experienced a traumatic event which triggered this outbreak on my face that was the weirdest thing, it was characterized by:

- abrupt onset

- extremely painful

- burning and stinging sensation

- litlte lesions that looked almost like flat acne that sort of hardened and scabbed over after a few days but then popped up in other places.

- The lesions and pain were exactly symmetrical on both sides of my face (weird).

- I have what felt like blisters almost under my eyes (2 under each eye in exactly the same place on both sides of my face).

The doctors were unsure and gave me Minocycline and a topical antibiotic which helped clear it for a few weeks then it came back but to a lesser extent yet still lingered.

The blisters under the eyes remained and would start to go then come back then surface again, then begin to fade - back and forth for several months. Then the lesions all over the face (symmetrical again) started in the spring, both sides, stinging and burning, almost feels like wind burn. I was now on Doxycycline and the Derm switched me over to Bactrim DS (did not help much more). I then went on Accutane @ 40mg as he felt it was peraphs inflammatory skin disorder similar to acne. Still to this day, one year later I am dealing with this persistint stinging and burning in my skin and what feels like little blisters but they never surface fully surface as they did the first time (likely due to the meds I am on). But they never fully go away and always return or surface in the exact same area and are so painful, the worst pain I have ever felt. I am on Bactrim, Accutne and Indomathecin (a strong anti-inflammatory) as well as using topical Bactroban to the areas when they flare and get sore. The pain is periodic, comes and goes, sometimes lasting hours, or days.

Does this sound like it could be a case of Dermatitis Herpetiformis?

I had no idea about Celiac disease until I started searching around and told my mom about what I was experiencing and she informed me that the docs thought what I had was Celiac when I was a baby. I never knew the name of what they thought it was, it was over 20 years ago now.

So now I am thinking perhaps this is what it is? Maybe the traumatic event triggerd the symptoms to come back? (As I read this happens in those with Celiac who do not follow the proper diet._

I see a gastro specialist on Monday and I am going to see if I can get that endoscopic biopsy done.

If this is the cause I will be forever greatful because I know I can treat it with a diet. Not that it would be good to have this, but not knowing and having no treatment for something that is incredibly painful is worse imo.

Sorry for the babble, feedback and opinions welcome! I know nothing much about this DH condition and cannot find much on the internet so am hoping to gain some possible insght.

THANKS!

- extremely painful

Hi Oldskool

I have what sounds like the samething on my hands, the on set is a tramendous burning like you had your hands on the burner of the stove and the burning subsides but rarely gose away, I have tried ice packs on this and it dose no more than temporary relief, red round spots about 1/4 inch in diamiter with a white spot in the middle, which turns to scale in 24-48 hrs, on the other hand D.H. as explained by my Dr. as being a rash made up of 1/4-1/2 inch raised red sites with small liquid filled centers that are very ichy and tender and only subsiding when gluten free for days. If you find out what is the cause of you rash please please let me know as I have had this for several years, and had it when I was 14 yrs old, but when I was younger it just went away as quickly as it came lasting only afew weeks.

ccrrgn

[YoloGx]

Hi Oldskool

I have what sounds like the samething on my hands, the on set is a tramendous burning like you had your hands on the burner of the stove and the burning subsides but rarely gose away, I have tried ice packs on this and it dose no more than temporary relief, red round spots about 1/4 inch in diamiter with a white spot in the middle, which turns to scale in 24-48 hrs, on the other hand D.H. as explained by my Dr. as being a rash made up of 1/4-1/2 inch raised red sites with small liquid filled centers that are very ichy and tender and only subsiding when gluten free for days. If you find out what is the cause of you rash please please let me know as I have had this for several years, and had it when I was 14 yrs old, but when I was younger it just went away as quickly as it came lasting only afew weeks.

ccrrgn

Just wanted to say I get eczema like reaction in my ears and nethers when I eat the wrong thing.

Also want to rant. I just went to birthday party and thought I was being careful at a the restaurant etc. but apparently not enough. I think due to following my diet more stictly to a void hidden glutens I am more reactive. Its worth it however since overall I feel so much stronger and better. However due to the reaction I couldn't sleep last night at all and to top it off my kidneys started hurting again. Fortunately I got up and made a pot of my detox herbs which made all the difference almost immediately. Made it so I could sleep plus my scarred right kidney calmed down. Rash of course was flaming but again the tea reduced the swelling and redness and flaking incredibly. Am having my second cup now after being woken after sleeping 5 hours. Will be back to bed shortly.

The other rant part is that I too was diagnosed with celiac as an infant of 4 months after almost dying from being introduced to grains but no one bothered to tell me until a week ago. I was reintroduced to grains when I was four and started becoming sickly ever after. I have a reputation in my family for being a hypochondriac because of my concern with my health. However if I hadn't been concerned I would have died from kidney disease which as it turns out was brought on by my allergies to citrus and gluten.

I am now overall now a lot more healthy than the rest of my siblings some of whom are still in denial of their celiac--fortunately at least my eldest sister listened and it has transformed her life for the better.

They of course think I am now completely off my rocker about avoiding trace gluten. It probably didn't help my rep with my family that when I was younger the gluten affected my brain and I was often in a kind of semi dream state. What they don't see is how I am a practical person and have rectified my health.

Now I have decided to write a book about the healing properties of herbs and various strategies dealing with celiac. I wrote 9 pages of outline last night when I couldn't sleep.

There that helped!!