Rash and gluten intolerance?

[tracym007]

Hello everyone. I am posting in hopes that someone has went through my experience and help me figure out if I may be gluten intolerant. Last summer I developed a small rash on my lower left leg on the front. It was a little itchy but I didn't think much of it. I wasn't sure what it was because I am immune to poison ivy. Anyway, it spread on my leg and developed in other areas too- my elbows, right leg, waist (front and back) and became intensely itchy. The itch was so bad that I couldn't help scratch until I bled sometimes. The rash on both legs ended up spreading around both bottom legs to front and back (about 3/4 of bottom leg was covered) and sometimes my legs would swell where the rash was.  I went to numerous doctors, including dermatologists and allergists. The dermatologist diagnosed it as eczema and I was given topical steroid creams, steroid injections, and antibiotics (because some spots looked infected I'm sure from the constant itching). The itching would stop and the rash would start to clear up. But before long (I believe when the steroid injections wore off) the rash would come back and start intensely itching again. I went through this 3 times before the allergist decided to do a biopsy which wasn't conclusive for anything unfortunately. I was so frustrated and through research and talking to a friend of mine who's mom has celiac disease, I asked my doctor to run a celiac blood panel. I was shocked when it came back negative. I was so sure that it had to be because of the gluten. As I read more however I am thinking it maybe could be a gluten intolerance and of course there is no sure test for this. So I am slowly weeding gluten from my diet to see what happens. It's difficult especially since I'm not a big fruit and veggie lover. I also have some other symptoms that I didn't even know were related until I started doing heavy-duty research. I was diagnosed with depression in 2008 and I also have periods of "brain-fog" where I feel like I can't concentrate or think clearly. Also on occasion I have some gut pains and feel bloated. What I am looking for on here I guess is some validation that someone else has experienced the whole rash thing and encouragement as I make the switch to gluten-free living. Thanks!

[leelomba]

What you describe is very similar to my experience. Only I didn't have a Dr. at the time. I dealt with it for a few years. First appeared on my torso in the hip area, then it went away there and appeared on the front of my shins, both times it was somewhat symmetrical, don't know that that matters. I also couldn't help but scratch as you experience. They were little tiny bumps, almost like poison oak but a little different. I know PO well, and this was different. Less oozy.

I did some food eliminations—wheat, strawberries, etc., but no change  Again, this went on for several years. I thought I might be reacting to fabric detergent, dust, I tried exhausting every piece of info I could find and tried numerous eliminations. I went to the school nurse at the community college I was attending (go SRJC! same town this site is produced, coincidentally), and I think they may have given me a steroidal cream that didn't help at all unfortunately. I was desperate! I didn't want to wear skirts for several years because of the rash on my shins  Nothing I tried helped AT ALL. I felt like I was crazy.

THEN—out of desperation I was looking at photos of rashes online to try and find one that resembled mine (GROSS!!!! EW!!! not something I would normally do!), and came across a comparison chart of rashes and symptoms with photos. And one of the photos/descriptions sort of spoke to me. They said that particular rash was called 'dermatitus herpetiformis' and was caused by Celiac Disease. But I had already eliminated wheat!! OR SO I THOUGHT. Little did I know all the hidden places wheat lurked, and what was this gluten thing?

So I eliminated at wheat and gluten from my diet.

THE RASH WENT AWAY IN A FEW DAYS AND HASN'T BEEN BACK. This April will make 12 years gluten free for me. I felt better in a whole host of ways. I never knew my tummy was rumbly or that I was dealing with brain fog, my periods became less out of control heavy, and I felt a little better emotionally, a little less anxiety.

Hope this helps!!

[squirmingitch]

1 hour ago, tracym007 said:

Hello everyone. I am posting in hopes that someone has went through my experience and help me figure out if I may be gluten intolerant. Last summer I developed a small rash on my lower left leg on the front. It was a little itchy but I didn't think much of it. I wasn't sure what it was because I am immune to poison ivy. Anyway, it spread on my leg and developed in other areas too- my elbows, right leg, waist (front and back) and became intensely itchy. The itch was so bad that I couldn't help scratch until I bled sometimes. The rash on both legs ended up spreading around both bottom legs to front and back (about 3/4 of bottom leg was covered) and sometimes my legs would swell where the rash was.  I went to numerous doctors, including dermatologists and allergists. The dermatologist diagnosed it as eczema and I was given topical steroid creams, steroid injections, and antibiotics (because some spots looked infected I'm sure from the constant itching). The itching would stop and the rash would start to clear up. But before long (I believe when the steroid injections wore off) the rash would come back and start intensely itching again. I went through this 3 times before the allergist decided to do a biopsy which wasn't conclusive for anything unfortunately. I was so frustrated and through research and talking to a friend of mine who's mom has celiac disease, I asked my doctor to run a celiac blood panel. I was shocked when it came back negative. I was so sure that it had to be because of the gluten. As I read more however I am thinking it maybe could be a gluten intolerance and of course there is no sure test for this. So I am slowly weeding gluten from my diet to see what happens. It's difficult especially since I'm not a big fruit and veggie lover. I also have some other symptoms that I didn't even know were related until I started doing heavy-duty research. I was diagnosed with depression in 2008 and I also have periods of "brain-fog" where I feel like I can't concentrate or think clearly. Also on occasion I have some gut pains and feel bloated. What I am looking for on here I guess is some validation that someone else has experienced the whole rash thing and encouragement as I make the switch to gluten-free living. Thanks!

Read this thread & also threads on the dermatitis herpetiformis section.

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

[tracym007]

20 hours ago, leelomba said:

What you describe is very similar to my experience. Only I didn't have a Dr. at the time. I dealt with it for a few years. First appeared on my torso in the hip area, then it went away there and appeared on the front of my shins, both times it was somewhat symmetrical, don't know that that matters. I also couldn't help but scratch as you experience. They were little tiny bumps, almost like poison oak but a little different. I know PO well, and this was different. Less oozy.

I did some food eliminations—wheat, strawberries, etc., but no change  Again, this went on for several years. I thought I might be reacting to fabric detergent, dust, I tried exhausting every piece of info I could find and tried numerous eliminations. I went to the school nurse at the community college I was attending (go SRJC! same town this site is produced, coincidentally), and I think they may have given me a steroidal cream that didn't help at all unfortunately. I was desperate! I didn't want to wear skirts for several years because of the rash on my shins  Nothing I tried helped AT ALL. I felt like I was crazy.

THEN—out of desperation I was looking at photos of rashes online to try and find one that resembled mine (GROSS!!!! EW!!! not something I would normally do!), and came across a comparison chart of rashes and symptoms with photos. And one of the photos/descriptions sort of spoke to me. They said that particular rash was called 'dermatitus herpetiformis' and was caused by Celiac Disease. But I had already eliminated wheat!! OR SO I THOUGHT. Little did I know all the hidden places wheat lurked, and what was this gluten thing?

So I eliminated at wheat and gluten from my diet.

THE RASH WENT AWAY IN A FEW DAYS AND HASN'T BEEN BACK. This April will make 12 years gluten free for me. I felt better in a whole host of ways. I never knew my tummy was rumbly or that I was dealing with brain fog, my periods became less out of control heavy, and I felt a little better emotionally, a little less anxiety.

Hope this helps!!

 

[tracym007]

On ‎2‎/‎19‎/‎2016 at 4:29 PM, leelomba said:

What you describe is very similar to my experience. Only I didn't have a Dr. at the time. I dealt with it for a few years. First appeared on my torso in the hip area, then it went away there and appeared on the front of my shins, both times it was somewhat symmetrical, don't know that that matters. I also couldn't help but scratch as you experience. They were little tiny bumps, almost like poison oak but a little different. I know PO well, and this was different. Less oozy.

I did some food eliminations—wheat, strawberries, etc., but no change  Again, this went on for several years. I thought I might be reacting to fabric detergent, dust, I tried exhausting every piece of info I could find and tried numerous eliminations. I went to the school nurse at the community college I was attending (go SRJC! same town this site is produced, coincidentally), and I think they may have given me a steroidal cream that didn't help at all unfortunately. I was desperate! I didn't want to wear skirts for several years because of the rash on my shins  Nothing I tried helped AT ALL. I felt like I was crazy.

THEN—out of desperation I was looking at photos of rashes online to try and find one that resembled mine (GROSS!!!! EW!!! not something I would normally do!), and came across a comparison chart of rashes and symptoms with photos. And one of the photos/descriptions sort of spoke to me. They said that particular rash was called 'dermatitus herpetiformis' and was caused by Celiac Disease. But I had already eliminated wheat!! OR SO I THOUGHT. Little did I know all the hidden places wheat lurked, and what was this gluten thing?

So I eliminated at wheat and gluten from my diet.

THE RASH WENT AWAY IN A FEW DAYS AND HASN'T BEEN BACK. This April will make 12 years gluten free for me. I felt better in a whole host of ways. I never knew my tummy was rumbly or that I was dealing with brain fog, my periods became less out of control heavy, and I felt a little better emotionally, a little less anxiety.

Hope this helps!!

Thanks leelomba! It sure does help. I am going to a completely gluten-free diet to see if the rash goes away (hopefully for good). I completely understand not being able to wear skirts and shorts. My rash started last summer and I was too embarrassed to wear shorts or go to the pool. I was afraid people would think the rash was contagious even though my daughters who live with me never got the rash. I just can't keep spending money to go to these specialists and not have an answer. I am learning a lot about gluten from this site as well as others and you are correct that it is hidden in a lot of things that you don't think of. Congrats on the 12 years of being gluten free! It encourages me that I can do it and hopefully live a better life without constant rashes, brain-fog and fatigue.

Take care and thank you again!

[tracym007]

On ‎2‎/‎19‎/‎2016 at 5:01 PM, squirmingitch said:

Read this thread & also threads on the dermatitis herpetiformis section.

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

Thank you for posting squirmingitch! I tried to post pictures on the DH forum, however it says the photos that I transferred from my phone are too large and I'm not sure how to reduce the size down unfortunately