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Pictures Of My Rash

Sam81

By Sam81
in Dermatitis Herpetiformis

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eatmeat4good Enthusiast
eatmeat4good
Posted

Unfortunately that is probably typical of most dermatologists. The Registrar knows more about what DH can look like than the consultants or the Dermatologists do. It is very common to be told it is not DH. But then to have the gluten free diet clear it up. I lived with the damn rash scarring my face and 3 chiefs of Dermatology told me it is neurotic excoriation....caused by me. Yeah, caused by me....ON GLUTEN!!!

I hope they did your biopsy right...and I hope you will let us know the results.

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ravenwoodglass Mentor
ravenwoodglass
Posted

It is very common to be told it is not DH. But then to have the gluten free diet clear it up. I lived with the damn rash scarring my face and 3 chiefs of Dermatology told me it is neurotic excoriation....caused by me. Yeah, caused by me....ON GLUTEN!!!

Yea I got a lot of that also followed with 'here's a script for Prozac'!

pricklypear1971 Community Regular
pricklypear1971
Posted

Yea I got a lot of that also followed with 'here's a script for Prozac'!

Geez. What's the universal doctors problem with DH???? I googled "rash iodine" and the only stuff I came up with was DH and iodine allergy. I don't think we have an iodine allergy from the positive results of going gluten-free.

What other rash is helped by withdrawing iodine????

Jnkmp8 Newbie
Jnkmp8
Posted

Hi all.

I have recently been diagnosed with DH.. going gluten free takes time to clear it up... But in the mean time I bathe the rash in (I kid you not!) cooled Roobios/red bush tea--it soothe without stinging--& eases the inflammation caused. It helps to drink it too!! Good luck all--I'm still waiting for celiac diagnosis as my DH ETC A isn't text book!!! I have a gestro apt coming up soon so fingers crossed--as my DH affects my hands/mouth/throat& face--due to severity I've had to drop gluten...so my testing is very hit & miss!!

Wish you all itch free!!

Xx

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi all.

I have recently been diagnosed with DH.. going gluten free takes time to clear it up... But in the mean time I bathe the rash in (I kid you not!) cooled Roobios/red bush tea--it soothe without stinging--& eases the inflammation caused. It helps to drink it too!! Good luck all--I'm still waiting for celiac diagnosis as my DH ETC A isn't text book!!! I have a gestro apt coming up soon so fingers crossed--as my DH affects my hands/mouth/throat& face--due to severity I've had to drop gluten...so my testing is very hit & miss!!

Wish you all itch free!!

Xx

If you have been diagnosed with DH then you have celiac and no further testing is needed.

Sam81 Apprentice
Sam81
Posted
  • Author

Unfortunately that is probably typical of most dermatologists. The Registrar knows more about what DH can look like than the consultants or the Dermatologists do. It is very common to be told it is not DH. But then to have the gluten free diet clear it up. I lived with the damn rash scarring my face and 3 chiefs of Dermatology told me it is neurotic excoriation....caused by me. Yeah, caused by me....ON GLUTEN!!!

I hope they did your biopsy right...and I hope you will let us know the results.

Will do. Consultant also said rash on my face is acne! Having looked at the biopsy sites today it actually looks like she's taken 2 biopsy's of the rash not one of clear skin so I don't hold much hope for a valid test. Was also told lot's of rashes respond well to Dapsone. Oh, well - feeling very deflated :(. Next appointment is beginning of October with Gastro people...

terr Newbie
terr
Posted

Hello to all! I am new to this site. I have been reading it over for the last few days and it seems like you are my people. I've had a rash on my neck, and inside my elbows for over a year now. I wake up scratching it every single day and started cuting my nails down to the nub so I don't scratch it open. The last few months I've had some of the gastro problems common in celiacs. My immediate family is riddled with a host of auto-immune diseases all related to gluten intolerance. My sister has Turners, my mom is borderline diabetic, my dad and I both have a host of food allergies, esp to pretend sugar, and my other sister gets blinding migraines. So, all that-coupled with my lack of insurance makes me comfortable self-diagnosing and just going gluten-free to see if my diarea and skin clears up. I've been gluten-free,(I think)for the past three days and although the food restrictions don't bother me, yet. I am unsure what to look for on labels. I cook a lot so as long as I know what to look for, I think I can avoid being 'glutened' at home.

Does anyone know what to look for on labels? Also, I am scared to death reading some posts here about kissing someone who just had a slice of bread and then flaring up. Are the majority of sufferers that G-sensitive that they need to throw out all their wooden spoons and cutting boards to be safe? Or are they just the vocal minority? Please help, I like to know in advance how paranoid I need to be. My bf walks around munching on a baguette a good chuck of the time. If he kisses me, will I get sick?

I am also interested in home remedies to stop the itch.

Thanks!

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pricklypear1971 Community Regular
pricklypear1971
Posted

Will do. Consultant also said rash on my face is acne! Having looked at the biopsy sites today it actually looks like she's taken 2 biopsy's of the rash not one of clear skin so I don't hold much hope for a valid test. Was also told lot's of rashes respond well to Dapsone. Oh, well - feeling very deflated :(. Next appointment is beginning of October with Gastro people

Have you drastically reduced iodine and had positive results? I don't know of any other rash that responds to gluten/iodine withdrawal (if anyone does know of one I'd

love to know). Iodine allergy responds to iodine... But that's easy to test for.

eatmeat4good Enthusiast
eatmeat4good
Posted

I didn't believe at first about the trace gluten and cross contamination.

But I am a believer now!

I read about kissing a gluten eater...didn't want to think it would be true for me...but it was. You can either believe it or test it, but I can tell you that tiny trace gluten can make DH react for a long time. Now I'm on the paranoid side...and believe all posts I read about CC because others have experienced them. I got glutened by touching cookies..handing them out and then eating my own food. Just that tiny bit of gluten made me sick for 3 days. Everyone has to learn their own degree of sensitivity. You can test each of the theories about CC for yourself, or you can just believe it. I probably ended up testing them all and found them to be sadly very true.

Sam81 Apprentice
Sam81
Posted
  • Author

Have you drastically reduced iodine and had positive results? I don't know of any other rash that responds to gluten/iodine withdrawal (if anyone does know of one I'd

love to know). Iodine allergy responds to iodine... But that's easy to test for.

I'd like to try these theories out but with stomach people (hopefully) wanting to do an endoscopy - will limiting iodine affect the result of a biopsy done on lower intestine?? If not I will attempt it immediately!! This rash is driving me nuts! Also I'm in a place where everything I try seems to be "excused" by Dr's as a coincidence!

pricklypear1971 Community Regular
pricklypear1971
Posted

No. Iodine takes away one ingredient needed for the rash to erupt. Don't know how it will work if you're still choking down gluten, though.

Until you go gluten-free that rash is going to be bonkers, best guess. Try reducing iodine and see.

Sam81 Apprentice
Sam81
Posted
  • Author

No. Iodine takes away one ingredient needed for the rash to erupt. Don't know how it will work if you're still choking down gluten, though.

Until you go gluten-free that rash is going to be bonkers, best guess. Try reducing iodine and see.

Thanks, will give it a go then. And Iodine is reducing the amount of salt in the diet? Things in the UK aren't named Iodine - just salt!

pricklypear1971 Community Regular
pricklypear1971
Posted

Thanks, will give it a go then. And Iodine is reducing the amount of salt in the diet? Things in the UK aren't named Iodine - just salt!

Google "thyca" and read the diet guidelines.

Sam81 Apprentice
Sam81
Posted
  • Author

Google "thyca" and read the diet guidelines.

Thanks - that was REALLY helpful. :D Unfortunately having checked most of the ingredients in the house I can't see anything labelled Iodine... Think I'll just stick to salad and fresh veg - might help me shed some pounds too...

This site really is amazing and full of fabulously helpful people - a god send and a massive THANK YOU!!

Hopeful1950 Explorer
Hopeful1950
Posted

Be sure to check any medications. Several years ago I took a weekly medicine for my bones that contained high levels of iodine. That's when my DH ended up covering about 60% of my body. Look for iodine and also povidone (which can contain iodine). I have found povidone in all kinds of pills/tablets.For example: Pepto Bismol tablets for stomach upset. I have had to invest in a good magnifying glass so I can read all the fine print on all these things!

CRashster Newbie
CRashster
Posted

The second and fourth picture is hives. Urticaria.

Marsmom Newbie
Marsmom
Posted

Please check into your personal care products! My daughter has this rash and after going crazy for a year we had extensive allergy testing done and it was found she was allergic to hydrolyzed wheat protein. After going through all shampoos etc. The main hair product she used daily- a "shine" product contained this. She stopped it immediately and and was given a foam steroid to use and her rash finally cleared up. It's amazing to see the difference. Her doctor told her to watch her diet to see if it would flare up and she was cautious but it has no reaction . Last week she tried a new product for shine and within 2 days the rash reappeared. So again shes using the foam and i found the product contained the wheat but isn't listed on product. She had been very careful to only use items without it, but wanted to try a different brand. No one else and many doctors, had never heard of this or thought of it as a possability. Our doctor said if she wasn't allergic to gluten as a child this had to be topical. Turns out to be right it seems . Many natural products such as aveda are loaded with it and all the " frizz ease" products for shine etc. are also. I hope this gives you some relief. I noticed you weren't doing anything other than diet and not getting relief. This is exactly how my daughters skin looks and several doctors thought it was scabies too. But it didnt go away. She had steroid shot that releived it for a short time but that was all. Her rash looks just like this and in the elbows and back of knees and back the worst-and is extremely itchy. You feel so desperate watching her. But the turnaround just from changing hair products was unbeleivable. I found this site looking for help in identifying products. So I wanted to share our story.

Sam81 Apprentice
Sam81
Posted
  • Author

The second and fourth picture is hives. Urticaria.

Isn't hives an allergic reaction to something though?? I'm not even getting that far - just told its acne/psoriasis or eczema!

glutengirl42 Rookie
glutengirl42
Posted

I've been diagnosed about 3 months and began a gluten free diet around that time, but I still didn't feel 100% after going "gluten free". I found out yesterday that my Centrum multi-vitamin wasn't gluten free after all, so that vitamin that I thought was helping me, was actually gluten in disguise. I too have had this oval, bulls eye type rash that I initially thought was possibly lymes disease, but the test came out negative. The outer edges of it have gotten pinker and the inside appears yellowish. My Dr friend prescribed me this cream to take in the event it was fungal and it's had little to no improvement - therefore it isn't fungal. The rash has not spread, but has gotten much itchier as time goes on. After looking at varoius pictures I think it's a "gluten rash", but I can't imagine what else besides the vitmain that could still contain gluten. I'm not sensitive to dairy but I try to use soy, almond or rice milk so I don't develop an intolerance to dairy. I too suffer from neurological symptoms. I get tingling in my arms/hands and sometimes feet, I suffer from migraines. I'm still having difficulty going to the bathroom. I still do not have normal bowels. I'm mostly contipated and I still feel as if I have that "swollen belly". Everyone says that when you go on the gluten free diet you should lose weight but I feel so fat. Before being diagnosed I gained 30 pounds from prednisone b/c I was breaking out in such severe hives. I have lost a good amount of weight from the steroids, but I still need to lose about 12 pounds. Despite my effort to be gluten free, I still feel fat, swollen, lethargic, and uncomfortable and it's much harder for the weight to come off. Any suggesttions or similar experiences?

ravenwoodglass Mentor
ravenwoodglass
Posted

I've been diagnosed about 3 months and began a gluten free diet around that time, but I still didn't feel 100% after going "gluten free". I found out yesterday that my Centrum multi-vitamin wasn't gluten free after all, so that vitamin that I thought was helping me, was actually gluten in disguise. I too have had this oval, bulls eye type rash that I initially thought was possibly lymes disease, but the test came out negative. The outer edges of it have gotten pinker and the inside appears yellowish. My Dr friend prescribed me this cream to take in the event it was fungal and it's had little to no improvement - therefore it isn't fungal. The rash has not spread, but has gotten much itchier as time goes on. After looking at varoius pictures I think it's a "gluten rash", but I can't imagine what else besides the vitmain that could still contain gluten. I'm not sensitive to dairy but I try to use soy, almond or rice milk so I don't develop an intolerance to dairy. I too suffer from neurological symptoms. I get tingling in my arms/hands and sometimes feet, I suffer from migraines. I'm still having difficulty going to the bathroom. I still do not have normal bowels. I'm mostly contipated and I still feel as if I have that "swollen belly". Everyone says that when you go on the gluten free diet you should lose weight but I feel so fat. Before being diagnosed I gained 30 pounds from prednisone b/c I was breaking out in such severe hives. I have lost a good amount of weight from the steroids, but I still need to lose about 12 pounds. Despite my effort to be gluten free, I still feel fat, swollen, lethargic, and uncomfortable and it's much harder for the weight to come off. Any suggesttions or similar experiences?

You mention rice milk, your not using Rice Dream are you? That isn't safe for us. Neuro problems can take some time to heal hang in there.

Sam81 Apprentice
Sam81
Posted
  • Author

Hi guys - wanting to vent really. Seeing Gastro Intestinal people for the first time tomorrow and already feeling negative about it. Any tips?? I have fresh rash, migraines, nausea, numbness/tingling in hands all apparent. I just know I'll be told acne, eczema, stress and poor circulation - coupled with IBS...

pricklypear1971 Community Regular
pricklypear1971
Posted

Request (ok DEMAND) a full celiac panel.

Request a small intestine biopsy.

Repeat repeat repeat.

Sam81 Apprentice
Sam81
Posted
  • Author

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??

pricklypear1971 Community Regular
pricklypear1971
Posted

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??

Ok, well that sucks.

I would look into independent blood testing - where a doctor doesn't have to order it. I have no idea where/how in the UK. Do you have alternative practitioners like Naturapaths there? Could one (if you have them) order the tests?

Fortunately, you don't need anyone's permission or RX to go gluten-free if it comes down to it.

pricklypear1971 Community Regular
pricklypear1971
Posted

And you aren't a head case.

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      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

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      Are Lindt chocolate balls gluten free?

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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