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Celiac Rash - Dh


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44 replies to this topic

#31 pricklypear1971

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Posted 25 October 2012 - 05:29 AM

My blood test for Dapsone is still not back :( . I am seeing a tremendous improvement in some areas. I had the rough, red skin on my sides and those places have almost disappeared. I am in shock!

I almost decided to stop taking the Dapsone today. About 2 hours after I take a pill, I seem to have an itchy episode on the underneath of my arms that have not broken out previously. This rash/itch is not like the other lesions. Just thinking that could be a rash from the Dapsone? I will call my doctor tomorrow. I figured it would take several months for all my skin to clear as it covers head to the feet. One itchy, burny mess!

Good luck to you!


An allergic reaction can show up as a red, web-like rash that has tiny pin-prick "heads" that barely rise on the surface of the skin. That's how I react to sulfa and cephalexin drugs. I usually develop it on my trunk/ chest/belly/thighs. I also feel like I'm getting the flu (swelling lymph nodes) if I keep taking it).

I had BOTH that rash and DH once. It was a thrill, let me tell ya. The allergic rash has a whole different feeling to it. Very scratchy and rough like my skin was made from sandpaper.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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#32 Really good scratcher

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Posted 25 October 2012 - 07:02 PM

Hi pricklypear,
I have had two rashes together before when they found out I was allergic to my water pill, and found out sulpher based drugs really give me an allergic reaction. I know how miserable that is!!
Dapsone was tried with me anyway and it didn't take but two weeks and my rash got worse. Took me off Dapsone, and now I am on Cellcept, an Immunosuppressant drug. I've only been on it three days. They want me to take weekly blood tests to make sure I tolerate it O.K.
I worry about these Immunosuppressant drugs though. I have a friend who is into natural healing and she doesn't want me on these drugs at all. But. Big But. haha no pun intended. But. I am so tired of my skin being red, itchy, patchy, sometimes blistery, sometimes thick and bumpy, but consistently a rash. I hate the itch because like my sign-on name states, I am a really good scratcher, and I'll scratch until the itch eases up and I'll have to clean my skin up from the blood I've caused to flow due to the breaking of the skin. Gross I know, but that's how it's been for me. I'll get cold water running and soak a few hand towels and lay the towels on my skin. That helps for about ten to twenty minutes. Then my skin will itch all over again. It's been a rough road to travel.
Right now my skin feels pretty good. I just went off the Prednisone though, and now I am on this medicine called Cellcept. I still itch, but not as much. My hope is that by going Gluten Free, and by trying this Cellcept med, my skin will improve. If the itch goes away, then my scratching will stop! When that happens, my skin will try to improve! Once this happens, I am hoping the Gluten free life will perhaps let me go off the Cellcept med too. That's my plan. Hope it works!
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#33 sisterlynr

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Posted 01 November 2012 - 01:13 AM

Good news for the Dapsone issue. My hemoglobin is up to 12.2 and all my labs look good so doctor feels I can continue taking this drug. My blood sugar levels are down and I've lost 16 lbs which is wonderful!

My chest and belly seem to be healing and almost no itch or stinging. My scalp and mid back are just driving me nutso! I have also broken out on the sides of my face. I am gluten free for 1 week and also no iodized salt intake. I am still taking Benadryl. I question why am I itching so much on my back and scalp/face? I also scratched my tail end until it bled, just tonight. :unsure:

My doctor doesn't seem to see the difference in the rash. . . she is now asking me to see a different dermatologist to check for Cutaneous T-Cell Lymphoma. My PET scan was normal from 3 weeks ago but evidently CTCL would not show on a PET scan. So here I go again. She does feel the new dermatologist needs to test for DH properly. So maybe this is a good plan?

I have tried several medicated shampoos, tea tree oil and nothing is healing my scalp. Any suggestions?
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#34 pricklypear1971

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Posted 01 November 2012 - 08:13 AM

Good news for the Dapsone issue. My hemoglobin is up to 12.2 and all my labs look good so doctor feels I can continue taking this drug. My blood sugar levels are down and I've lost 16 lbs which is wonderful!

My chest and belly seem to be healing and almost no itch or stinging. My scalp and mid back are just driving me nutso! I have also broken out on the sides of my face. I am gluten free for 1 week and also no iodized salt intake. I am still taking Benadryl. I question why am I itching so much on my back and scalp/face? I also scratched my tail end until it bled, just tonight. :unsure:

My doctor doesn't seem to see the difference in the rash. . . she is now asking me to see a different dermatologist to check for Cutaneous T-Cell Lymphoma. My PET scan was normal from 3 weeks ago but evidently CTCL would not show on a PET scan. So here I go again. She does feel the new dermatologist needs to test for DH properly. So maybe this is a good plan?

I have tried several medicated shampoos, tea tree oil and nothing is healing my scalp. Any suggestions?


One week gluten-free and if the only low iodine you are doing is non-iodized salt, is not enough to see if the diet affects your DH.

Also, some people have DH, are on the gluten-free diet, and use dapsone and only keep DH "tolerable" for months.

One week is NOT enough.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#35 ravenwoodglass

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Posted 03 November 2012 - 06:01 AM

Good news for the Dapsone issue. My hemoglobin is up to 12.2 and all my labs look good so doctor feels I can continue taking this drug. My blood sugar levels are down and I've lost 16 lbs which is wonderful!

My chest and belly seem to be healing and almost no itch or stinging. My scalp and mid back are just driving me nutso! I have also broken out on the sides of my face. I am gluten free for 1 week and also no iodized salt intake. I am still taking Benadryl. I question why am I itching so much on my back and scalp/face? I also scratched my tail end until it bled, just tonight. :unsure:

My doctor doesn't seem to see the difference in the rash. . . she is now asking me to see a different dermatologist to check for Cutaneous T-Cell Lymphoma. My PET scan was normal from 3 weeks ago but evidently CTCL would not show on a PET scan. So here I go again. She does feel the new dermatologist needs to test for DH properly. So maybe this is a good plan?

I have tried several medicated shampoos, tea tree oil and nothing is healing my scalp. Any suggestions?


Have you checked your shampoos and conditioners for gluten ingredients? Those may contribute to continued breakouts on the scalp. In shampoos meant to be soothing oats are a common ingredient and you also would want to check for wheat protein. I personally have to avoid soy protein in shampoos etc but that of course may not be an issue for you. I use the Garneir line as that is gluten free as far as the shampoos and conditioners I have checked. They will label clearly. There are other brands that are good and you may want to post a query in the products section to get input from others.
It does take some time for DH to heal though. It is good that you are on the diet now and hopefully soon things will resolve well for you soon. Do make sure your doctor runs liver panels on you on a regular basis while you are on dapsone as it can have side effects that involve liver function.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#36 sisterlynr

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Posted 10 November 2012 - 12:50 AM

I am now headed into my 5th week of Dapsone and gluten-free, io

Have you checked your shampoos and conditioners for gluten ingredients? Those may contribute to continued breakouts on the scalp. In shampoos meant to be soothing oats are a common ingredient and you also would want to check for wheat protein. I personally have to avoid soy protein in shampoos etc but that of course may not be an issue for you. I use the Garneir line as that is gluten free as far as the shampoos and conditioners I have checked. They will label clearly. There are other brands that are good and you may want to post a query in the products section to get input from others.
It does take some time for DH to heal though. It is good that you are on the diet now and hopefully soon things will resolve well for you soon. Do make sure your doctor runs liver panels on you on a regular basis while you are on dapsone as it can have side effects that involve liver function.

Have you checked your shampoos and conditioners for gluten ingredients? Those may contribute to continued breakouts on the scalp. In shampoos meant to be soothing oats are a common ingredient and you also would want to check for wheat protein. I personally have to avoid soy protein in shampoos etc but that of course may not be an issue for you. I use the Garneir line as that is gluten free as far as the shampoos and conditioners I have checked. They will label clearly. There are other brands that are good and you may want to post a query in the products section to get input from others.
It does take some time for DH to heal though. It is good that you are on the diet now and hopefully soon things will resolve well for you soon. Do make sure your doctor runs liver panels on you on a regular basis while you are on dapsone as it can have side effects that involve liver function.

dine

I am now into the 5th week of eating gluten-free, no iodine, no shellfish and taking Dapsone. I am taking 25 mg 2x a day. I wonder if I should be taking a stronger dosage? My blood test were all normal and she did check the liver. I have checked my shampoo and discarded it and purchased Dove products. I am using Argan Ointment on the skin and Sarna Lotion. I will have more blood test the last week of November. I've now lost 20 lbs and feel better than I have in months. I still itch on my back but no new lesions. The lesions on my back were some of the latest to break out. I'm hoping they will calm down and soon! Sometimes I wonder if I just need to moisturize more often. I do take Benadryl everyday. I want to thank everyone that has responded to me, thanks for the suggestions that have been so helpful to me. :rolleyes:
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#37 sisterlynr

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Posted 10 November 2012 - 01:12 AM

An allergic reaction can show up as a red, web-like rash that has tiny pin-prick "heads" that barely rise on the surface of the skin. That's how I react to sulfa and cephalexin drugs. I usually develop it on my trunk/ chest/belly/thighs. I also feel like I'm getting the flu (swelling lymph nodes) if I keep taking it).

I had BOTH that rash and DH once. It was a thrill, let me tell ya. The allergic rash has a whole different feeling to it. Very scratchy and rough like my skin was made from sandpaper.


I don't think I was having a reaction to the Dapsone. I continued taking it and watched carefully for skin changes. I have seen a few hive like places but they go away quickly. Thanks for your response.
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#38 sisterlynr

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Posted 11 November 2012 - 01:11 AM

One week gluten-free and if the only low iodine you are doing is non-iodized salt, is not enough to see if the diet affects your DH.

Also, some people have DH, are on the gluten-free diet, and use dapsone and only keep DH "tolerable" for months.

One week is NOT enough.


I must be a person that Dapsone will make the DH tolerable. I must say that I have a lot of stinging too. I see such a great improvement, I must have patience as there are no miracle drugs. :( I am now into week 4 and I'm not eating any product with iodine, not just salt. I have have lost 21 lbs as of today and oh so happy about that! My feet and ankles are not swollen and that must have been due to salt intake. Thanks for your comments. :rolleyes:
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#39 sisterlynr

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Posted 25 November 2012 - 11:59 AM

I have had blisters on my scalp and feet for many years. Dermatologists could not tell me why. In March of this year I broke out on my stomach and this rash has covered my body. Intense itch and stinging from my scalp to feet. Dermatologist have biopsied 3 times and each comes back with a different result. One was Grover's Disease, one was Follicutitis and one was eczema. All test were from the lesion, not the unaffected skin.

Yesterday my Int Med family doctor prescribed Dapsone as I begged her to try this. My rash looks and acts just like the DH that I see online. I have been diagnosed with Iron def anemia (mild), early Osteoarthritis, diabetes and went through chemotherapy for NHLymphoma in 2008. I had premature ovarian failure resulting in early menopause at the age of 30. All of the above can be caused by Celiac. I still test for an autoimmune and have negative results for MS, Sjor Syndrome, Lupus, Hepatitis, etc. I do have a cousin with Celiac and she has been gluten free for 6 years.

My question is. . . I began taking the Dapsone this morning and now have 2 doses in my system. I have been intensely itching for the past 2 hours all over my body. Is this normal for someone beginning Dapsone? When can I expect relief? I go back to the doctor on Monday for blood test and for her to check me. Thanks



Edited to add photos

http://i1323.photobu.../closerash1.jpg
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#40 sisterlynr

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Posted 06 December 2012 - 10:07 PM

Well, I have joined the many that have been told to see a psychiatrist because of my rash. I just about fell off the exam table as I listened to a new dermatologist tell me that my rash was caused by my mind. He told me that I felt an itch, scratched it and it became a blister of fluid. Then when the skin was broken, it became infected. He also told me that "everyone" saw psychiatrists to which I replied, "No, everyone does not"! He told me his wife was a psychiatrist, maybe he was trying to drum up a patient for her? LOL

Then he tells me I do not have T Cell Lymphoma, he knew that for sure (just by looking). Hmmmmm He said the 3 biopsies I had by the first dermatologist would have shown DH . . . I'm like, "No they wouldn't, she took the biopsy from the lesion." I think the guy met his match today. The appointment ended with him referring me to the head of Dermatology at USF. What a waste of my time today! He did not even offer to take a biopsy. I'm not really sure what he does. . .

Fortunately, with the Dapsone and eating gluten free, I am very much improved and expect to be even more improved by Feb 2013 when I'm scheduled to see the next dermatologist.
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#41 squirmingitch

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Posted 07 December 2012 - 06:43 AM

Maybe you ought to post that one in the "Stupid Stuff Doctors say" thread!

No, you aren't the first & you won't be the last to be told it's all in your head. heck, even the celiacs who don't have dh get told that on a regular basis.

Keep up with the Dapsone as long as it's okay for you & working & keep up the eating gluten free. :)
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#42 sisterlynr

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Posted 07 December 2012 - 11:02 AM

Maybe you ought to post that one in the "Stupid Stuff Doctors say" thread!

No, you aren't the first & you won't be the last to be told it's all in your head. heck, even the celiacs who don't have dh get told that on a regular basis.

Keep up with the Dapsone as long as it's okay for you & working & keep up the eating gluten free. :)



I probably should do that. . . maybe later today. (posting to stupid/doctors) :wacko:

My doctors group has a patient portal and I just checked my labs from 11/29/12. My hemoglobin is up to 13 and liver and kidney stats are both good. I am not having a problem with Dapsone, at all. I will continue using it, it has made a huge difference. I really need to take another set of pics for my DH records.

I just wish I could get my scalp cleared and keep my hands from picking at the scabs! I have been using Tea Tree Oil plus I bought vitamin E oil and putting it on my scalp. I have been applying the vitamin E oil everywhere, it is soaking into my skin. My cousin has Celiac and uses vitamin E oil. She does not have DH but evidently her skin is dry. So . . . . thanks for the support and good advice! :D
  • 0

Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#43 squirmingitch

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Posted 07 December 2012 - 03:52 PM

You better make darn sure that Vit E oil is not from wheat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#44 sisterlynr

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Posted 07 December 2012 - 11:05 PM

You better make darn sure that Vit E oil is not from wheat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Not from wheat but tocopheryl acetate which probably isn't good for me to use. It is used in many cosmetics but there is caution as it can be an irritant to skin, causing blistering, itch, etc. So, I probably won't use it now. It has coconut oil and soybean oil when checking the ingredients. Golly, I am finding I have to read the label on EVERYTHING! :rolleyes:
  • 0

Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#45 squirmingitch

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Posted 08 December 2012 - 05:48 AM

It's in lots of shampoos --- the tocopheryl acetate is supposed to be okay for us to use.

YES! We have to read labels on EVERYTHING! It gets to be a drag. :unsure:
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 



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