Article Showing The Relationship Of Several Skin Diseases With Gluten Sensitivity

[crazyitch]

Was combing through another forum and I came across these links...very interesting!

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[squirmingitch]

Yes, celiac disease is associated with many skin conditions. We tend to have skin sensitivities as well as allergies in general or develop allergies.

Did you read this? Read the thread & the link. It wasn't yet known that dh is caused by gluten --- celiac disease wasn't know to be caused by gluten yet.

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

 

See, the form you present with is described by him. It comes in differing forms. Just from personal experience, I believe the form is associated with the progression of the disease. But again, 99% of the derms (or even GI docs) out there do not know of any form except the water filled blisters. Just read on the internet descriptions of it & you rarely ever see any description other than blisters. You have to sift the info. out there. DH is the bastard stepchild of celiac disease & research on it has been woefully inadequate --- practically nil in relative terms. Also, 99% of the docs only know it presents in the "classic" much touted places of elbows, knees, buttocks, blah, blah ,blah so if you present with other areas like the belly it doesn't register with them. Also note most of what you read says it resolves in months on the gluten free diet --- meanwhile they contradict themselves by saying you need to stay on Dapsone for 2 years. Soooooo what are we talking about here then people? Months or 2 years? 

And Dapsone is a whole 'nother subject. I don't care what they say about it. On this board, there have been many, many who tried Dapsone & were unable to tolerate it -- got side effects. IMHO it's a very scary drug. If you think about trying it, I urge you to do your homework first! Please. Furthermore, if you are allergic to sulfa drugs, Dapsone is in the sulfa class soooooo..... I am allergic to sulfa drugs as well as penicillin. That leaves me with the terramycin/tetracycline class. There is a fourth or fifth down the line treatment for dh which is tetracycline + niacinimide but they claim it isn't nearly as effective not to mention the fact that if you take that, especially for extended period of time, you're also going to be killing all the good bacteria in your entire body.

[crazyitch]

Well I am pretty sure I either have dh or pn as my rash and symptoms resemble both diseases.  Those articles show that both are linked to gluten so it is a coin toss for me as to which it is!  The fallout is that today is day1 of my gluten free diet :D.  I am not sure where to begin with soaps lotions shampoos etc so I am starting with the food. I will be combing this forum for info on product info, it will give me something to do when I am awake at 4am lol.  Quick question, do prescription anti histamines help with this?  I have some doxepin so I am going to try it tonight before I go to bed.....I am also putting benedryl cream on my skin in the hopes that I can keep the itch to a level 5 instead of 10.

Off to have a gluten free dinner

:blink:

[squirmingitch]

Prurigo nodularis is the result of dh (& other skin conditions). It is caused by the constant scratching; at least that's what I read when I researched it. In other words, pn is not in & of itself a disease but it is rather the result of a disease sort of like IBS is not a dx, it is caused by something & is in fact a symptom of a disease. You catch my drift? We had a gal on here whose derm dx'd her with pn & at the same time denied the gal could even possibly have dh. Uh, duh, pn is the result of scratching dh. You wonder where some of these docs come up with this stuff or if they even have actual brains in their heads. Maybe they couldn't find their way out of a paper bag unless they had instructions. You can tell I just love doctors right?

 

You will also read that topical products containing gluten are not harmful to celiacs. True, & there have been studies to prove the gluten does not penetrate the skin. Fine. HOWEVER, in the case of dh, we have open sores where there is no protective layer of skin. Did they consider that? No. Until I see a bona fide study of dh'ers & topical products containing gluten not being harmful then I will continue to use products which don't contain gluten. Then we get to the point of how gluten on your skin can get in your mouth. If I have lotion on my legs & touch my legs & then touch my lips then I now have gluten in my mouth. If my dog eats gluten food & she licks herself --- dogs do that --- & I touch her or kiss her face, muzzle, nose, then I can get glutened. I love my dog & am very affectionate. Even though I have always made it a point to wash my hands, even pre celiac, after loving on her --- s$#& happens -- you get distracted, the doorbell rings, whatever & the next thing you know you haven't washed your hands & you've touched your lips. Just my opinion.

BTW, I am very glad you are obviously doing a lot of research & reading. That's great! It's the best way to learn & get this stuff down in your mind. Also re-reading things over & over again is quite helpful b/c there is SO much info. to digest & it takes repeated exposure to the info. to grasp all of it. There are a lot of rules.

I use Suave Naturals shampoo & conditioner -- cheap, does a great job & gluten free.

Vaseline Intensive Rescue repairing moisture body lotion is gluten-free (here in the US) but some of the others aren't.

Blistex simple & sensitive in the blue tube or Blistex medicated in the red & white squeeze tube.

There is a forum here where you can get lots of info. on products to use on your body.

I use Loreal Superior Preference hair color -- gluten-free. I just washed the grey outta my hair for the 1st time in 2 whole years!!!!!! It's been the first time I have had no lesions in my scalp for a long enough time that I felt comfortable with putting that stuff on my scalp. Gawd, it's great not to have grey again!!!!!!!!! I was looking like an old hag & I mean OLD HAG!

Prescription antihistamines can be of some help. You have to try it & see. Some things work for some & others for others. 

CHECK ALL YOU MEDS BOTH PRESCRIPTION & OTC TO MAKE SURE THEY ARE GLUTEN FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

You are in Canada & some of the labeling laws are different & I don't know them so be sure to be aware of that okay? I remember that Worchestershire sauce sold in the US is gluten free but in Canada it is not. 

 

I have reason to believe that your rash is not as advanced? or severe? if we were putting it on a scale of 1 to 10 & so I am thinking that you will be clear of this sooner rather than later. I certainly hope so. I presented with the "classic textbook" blisters. It's been a very long haul for me but I hardly ever get the blisters these days. It has ramped down to a lower level & they are more like bumps under the skin or subdermal blisters if you will. So I think this is all a progression downward with the rash. My hubs never had the blisters on top of the skin --- his were under the skin & they would break the skin open from underneath. He has improved much faster than I.

 

((((((((((((((HUGS Elaine)))))))))))))))))))))))

 

I hop you won't be up reading at 4 am tonight. But I know, been there, done that. I sleep through the whole night now & have for months & months & months.

[crazyitch]

Good morning and thank you for all the information!  The doxepin seemed to work okay but when I woke up, so did the itch.  It seems to go in waves where I will be unbearably itchy for a few hours and then it seems to calm down for a period of time; I am always aware of it but there are times when it is at least bearable. I also find that my arms may be super itchy while my legs are calm, or my back and neck will rage while other parts are' quiet', Is this typical of this disease or am I crazy to even think there is anything that could be labeled 'typical' about it? If it all went nuts at the same time they would have to restrain me lol!!

 

 Quick question about ingredients in non-edible products....how do I know if a chemical is a gluten or not....do I have to google every chemical name to ascertain whether or not it is a gluten?  I will never get out of a store if I have to do that. Also how can I be sure that they put all the ingredients on the label of non-edible products?  Some don't even have a list of ingredients.  Its all a bit overwhelming. GRRRRRRRRRRR

 

I am so glad to hear that you are finally able to dye your hair!  Self image can be huge when dealing with this in terms of how it ravishes the skin. I find I have to pick and choose my clothing so that it doesn't look like I have some contagious plague!  I would be completely depressed if I couldn't dye my hair.  I'd rather be bald than grey I think....(oops, I had better watch what I wish for eh??). Anyway it is encouraging to know that you are making progress.

 

I have only had this rash since September (I have had rashes in the past that have cleared with creams and time, not sure if they were related to this.  They were random and I never got to the root of what caused them) so I am hoping that it can be nipped in the bud.  I don't expect miracles but I am hoping that in a month or so I see a marked improvement in my skin. 

 

I am not sure at this point what the dermatologist will be able to do with me as I did have prednisone and I am now stopping the gluten.  I have 2 1/2 weeks until I go to see him.  I am not sure if the gluten will be gone by then or how this will affect the appt.  Like I said before, I am hoping he will at least assume or entertain the possibility that it could be DH. 

 

Well I am off to walk my dog, this rash has drained my energy and all members of the family are suffering including the dog.

 

Take care

 

E

[squirmingitch]

I'm glad you got a good night's sleep. Ha,ha,ha,ha,ha,ha, ..... typical or not typical. Thanks for the laugh. Laughter is the best medicine of all isn't it? Well, to answer your question, I think you pretty much know now what is typical of dh but let's say for you, right now, it's typical for certain parts to rage while others are quiet. That's actually a good thing --- don't spit your wine out on the keyboard now. There was a long time when mine raged EVERYWHERE 24/7. As I have gotten further & further away from gluten & things have improved, yes, I experienced certain areas kicking up while others were quiet & so has my hubs. That's why I say it's a good thing. You aren't goingoutofyourmindgoingtoscream&killyourself every hour of every day. DH, if you haven't read yet, is called the suicidal itch & I know why.

 

Ingredients in non edible products:

1st off let me make this perfectly clear b/c you will read otherwise.....  Tocopherol acetate is OKAY. If something says it has Vit E in it then look to see if it's in the form of  Tocopherol acetate & if it is, then it's FINE.

Here are some links for lists:

https://www.celiac.com/forums/topic/8351-how-to-find-hidden-in-cosmetics/

 

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And you can always call the company be it non edible or edible. When in doubt --- call! Or Google. I Google products all the time. Just put in the name of the product or item & then the words gluten free. 

 

I got the color wrong on my hair b/c they were out of my regular color & I was so anxious to get rid of the grey but hey! I'm so happy not having grey that I can live with this for a month till I do it the right color. This isn't much off but it's a bit coppery & dark. I don't care!    

 

The derm probably won't be able to do anything but the derm wasn't going to be able to do anything anyway. The problem with dh is that it's sooooooooooooooooooo freaking hard to get a dx!!!!!!!!!!!!!!!!!! So many reasons ppl can't get one. MOST are b/c of the derms not knowing what to do, how to recognize it, acknowledging it exists, knowing how to biopsy it, label the biopsy, etc, etc, etc. Knowing steroids make a difference when one has been on them, knowing the patient has to be eating gluten right up until the biopsy. 

[crazyitch]

Hi I have another question in regards to gluten sensitivity.  Is an allergy to gluten the same as being sensitive to it?  What I am trying to ask is, if your allergy test comes up negative in regards to gluten does that rule out being a celiac?  could you test positive for celiac but go to the allergist and show a negative reaction to the skin prick test or vice versa, could you test positive with the prick test and negative for the celiac by the dermatologist?.Can the allergist give a dx of  celiac with this test..... I also ask because my husband thinks I should go and be tested by the allergist.  I have had a prick test done on my last rash which was 5ish yrs ago and there was nothing said about gluten.  This leads to one more question, if you are a celiac does this mean you have always been one or can you just develop this disease where you previously didn't have it?  Hope that was all clear.....

[squirmingitch]

First, gluten sensitivity & celiac disease are 2 different things. At present, there is no test for gluten sensitivity & as far as anything I have read, dh does not present with gluten sensitivity. A dx of dh is a dx of celiac disease.

No, celiac disease is not an allergy at all. It is a disease of the immune system. You can have an allergy to wheat but not be celiac. You can have an allergy to wheat & also be a celiac. Yes, you could test positive to celiac & go to the allergist & be negative for wheat allergy. You could test positive for a wheat allergy & negative for celiac disease. Last I knew, allergists can't test for "gluten". And we get into semantics there --- corn has gluten, lots of things have gluten -- it's just that celiacs commonly call the glutens we have reactions to "gluten". And indeed even the medical community calls our reaction a gluten reaction but to be precise, our problem lies with the gluten in wheat, barley, rye & a few others.

 

When you are celiac, you have always had the genes as 1/3 of the population does, but not everyone with the genes will develop celiac disease. There are "triggers" for celiac but that does not mean you have to have a recognizable trigger for celiac disease to make itself known to you. The most common triggers are: surgery, illness, stress, pregnancy. You can develop celiac disease where you previously didn't have it. Some have had it all along. AND celiac disease can go into remission; that's why it was (& still is) so commonly thought of by docs as a childhood disease. In the early days of celiac being known to the medical community, a child would present with celiac disease -- generally dx'd when the child shows "failure to thrive". Back then, they would tell the parents the child would grow out of it or to keep the child off gluten for 10 years & then they would be able to eat it again & that was b/c it is not uncommon for kids to present with it & EVEN if they keep eating it, at some point they (not all of them) stop having symptoms. However, now we know that is just a temporary thing & the celiac will show up again at some point in their lives.

 

I know this is all sort of hard to believe. How can one have such a "slippery" disease? Having celiac disease which presents as GI issues is hard enough to get correctly dx'd. Now throw in dh & it's darn near impossible.

 

I know you want a dx or at least your hubs wants a dx or both of you do. Let's look at what you have said & what has been tried/tested for you.

The doc has dx'd you with "Excema, staph infection, SCABIES, contact dermatitis, and on and on it goes. "I have been prescribed antibiotics, steroid creams a mild one and later a strong one, 2 different anti histamines, was told to do several treatments of kwellada (for the scabies diagnosis), needless to say none of these has helped me.  I was given prednisone at the last doctors appointment because nothing else was touching the itch and that seems to help calm my skin a bit. I have been prescribed antibiotics, steroid creams a mild one and later a strong one, 2 different anti histamines, was told to do several treatments of kwellada (for the scabies diagnosis), needless to say none of these has helped me.  I was given prednisone at the last doctors appointment because nothing else was touching the itch and that seems to help calm my skin a bit." 

 

So nothing has been dx'd correctly.

 

Nothing except prednisone has given you any relief from the rash. That's telling right there. You were on anti histamines & the rash did not go away. THEN IT ISN'T AN ALLERGY. Antihistamines take care of allergies. Did it take care of your rash? No.

 

"the prednisone seemed to help with the itch and calming down the flaring and spreading of the rash but as soon as I was finished the drug the rash flared again within a couple of days."

The above statement is (here we go with an example of "typical" for dh) typical of dh & steriod usage.

 

"It seems to be spreading everywhere, my legs, arms, tummy, chest, neck, back hips." 

Right off I noticed that you used the plural version rather than singular. You are getting bilateral rash. Both arms, both legs, both hips. Dh presents on both sides or "echos" itself bilaterally. Here we go with typical again. Typical of dh.

 

Your description of what it feels like is another clue. Nothing is so maddening as dh. People with dh always seem to pick out the same words or descriptions to describe what it feels like. 

 

Have your hubs take photos of you so it can show the rash presenting on both sides of your body in one photo. Take photos to the derm appt. with you. Not teeny photos he has to look at on the cell phone but print them out so he can really see them.

 

The problems with getting a dh dx are so numerous & so vexing.

60% of us test neg. on the celiac blood panel.

For the blood panel, the endoscopy or the dh biopsy; one has to have been eating gluten for at least 2 months. Something most of us can't handle b/c we know it's going to take a long time for the antibodies to get out of our skin & we certainly don't want to be adding MORE! by continuing to eat gluten.

Then ther's the whole problem of will the doc recognize it, know how to biopsy it, know the rules for the biopsy such as no steroid use & must eat gluten till the biopsy, does the doc know how to correctly submit a dh biopsy to the lab?

The whole thing is fraught with problems. In short, it's damned if you do & damned if you don't.

And that's why so many of us decide to go gluten-free w/o a dx. Live with the rash long enough & you know what it is & you get to where you just don't give a darn about a dx b/c you have no doubt what it is & all you want to do is get started down the road to getting the antibodies out of your skin.

[mendylou]

Good morning and thank you for all the information!  The doxepin seemed to work okay but when I woke up, so did the itch.  It seems to go in waves where I will be unbearably itchy for a few hours and then it seems to calm down for a period of time; I am always aware of it but there are times when it is at least bearable. I also find that my arms may be super itchy while my legs are calm, or my back and neck will rage while other parts are' quiet', Is this typical of this disease or am I crazy to even think there is anything that could be labeled 'typical' about it? If it all went nuts at the same time they would have to restrain me lol!!

 

 Quick question about ingredients in non-edible products....how do I know if a chemical is a gluten or not....do I have to google every chemical name to ascertain whether or not it is a gluten?  I will never get out of a store if I have to do that. Also how can I be sure that they put all the ingredients on the label of non-edible products?  Some don't even have a list of ingredients.  Its all a bit overwhelming. GRRRRRRRRRRR

 

I am so glad to hear that you are finally able to dye your hair!  Self image can be huge when dealing with this in terms of how it ravishes the skin. I find I have to pick and choose my clothing so that it doesn't look like I have some contagious plague!  I would be completely depressed if I couldn't dye my hair.  I'd rather be bald than grey I think....(oops, I had better watch what I wish for eh??). Anyway it is encouraging to know that you are making progress.

 

I have only had this rash since September (I have had rashes in the past that have cleared with creams and time, not sure if they were related to this.  They were random and I never got to the root of what caused them) so I am hoping that it can be nipped in the bud.  I don't expect miracles but I am hoping that in a month or so I see a marked improvement in my skin. 

 

I am not sure at this point what the dermatologist will be able to do with me as I did have prednisone and I am now stopping the gluten.  I have 2 1/2 weeks until I go to see him.  I am not sure if the gluten will be gone by then or how this will affect the appt.  Like I said before, I am hoping he will at least assume or entertain the possibility that it could be DH. 

 

Well I am off to walk my dog, this rash has drained my energy and all members of the family are suffering including the dog.

 

Take care

 

E

I can identify with the itching becoming so much worse for a couple hours at a time.  And as you say you are always aware of the skin sensation but sometimes it is tolerable and other times not.  I always wake up sometime during the nite w/unbearable itchiness.  I have to scratch and then I try to leave it alone until it calms down.  It often takes at least an hour.  Any time I feel warm the itchiness is worse.  I have to wear soft clothing as not to irritate my skin.