Uncontrollable Itching And Gluten Free.

[mikyraso]

I have a question that I can't seem to find an answer for, or it just be I am just not looking in the wrong place. In May 2011 I was diagnosed with IBS after blood work and Endo came back neg. for Celiac. So I went on a gluten free diet, I will admit that about once a month I did have gluten. At that point I had my IBS under excellent control. However just this June (the end of June) I developed uncontrollable itching on my scalp ( it never stops itching) as well as on my face, arms, and sometimes on my legs. On the back of my neck I noticed and tiny pimple like bumps which go down to my shoulders. My dermatologist has taken biopsy's and I'm waiting for the results (the Derm. suggested it may be DH).

My question is with DH if you have a breakouts say on the back of your neck which is where my break out is and my scalp WON"T stop itching (with NO breakout) could this itching be a symptom of DH or something different. I just CAN'T STOP ITCHING AND I DON'T KNOW WHAT TO DO.I have been awake since 4 am with the itching UGH!!!!!

[Razzle Dazzle Brazell]

I have a question that I can't seem to find an answer for, or it just be I am just not looking in the wrong place. In May 2011 I was diagnosed with IBS after blood work and Endo came back neg. for Celiac. So I went on a gluten free diet, I will admit that about once a month I did have gluten. At that point I had my IBS under excellent control. However just this June (the end of June) I developed uncontrollable itching on my scalp ( it never stops itching) as well as on my face, arms, and sometimes on my legs. On the back of my neck I noticed and tiny pimple like bumps which go down to my shoulders. My dermatologist has taken biopsy's and I'm waiting for the results (the Derm. suggested it may be DH).

My question is with DH if you have a breakouts say on the back of your neck which is where my break out is and my scalp WON"T stop itching (with NO breakout) could this itching be a symptom of DH or something different. I just CAN'T STOP ITCHING AND I DON'T KNOW WHAT TO DO.I have been awake since 4 am with the itching UGH!!!!!

I would say it could be something you are eating or some personal care products you are using causing it. Sounds like it may be DH. I get an itchy fiery scalp with sores everytime I have high salicylate containing foods. I have not been back to my doctor since the new development so it is not diagnosed. It did not seem to come out until I went gluten free after a torturous gluten challenge. I guess my immune system was focused on gluten before.

Do you use gluten free hair products? You never know. I would definitely keep note on what foods you eat as well just to make sure you are not getting glutened or having an reaction to some other food.

[mikyraso]

I would say it could be something you are eating or some personal care products you are using causing it. Sounds like it may be DH. I get an itchy fiery scalp with sores everytime I have high salicylate containing foods. I have not been back to my doctor since the new development so it is not diagnosed. It did not seem to come out until I went gluten free after a torturous gluten challenge. I guess my immune system was focused on gluten before.

Do you use gluten free hair products? You never know. I would definitely keep note on what foods you eat as well just to make sure you are not getting glutened or having an reaction to some other food.

Thanks for responding. RDB Phew long name but I love it !!. The symptoms you mention is what I have been experiencing. but my soars are on the I have been using Finesse S & C, Vo5, or Baby Shampoo. I have been using gluten-free dish soap, Baby Wash or Dove soap. I stopped all other hair products around the 1st of July. What hair care products do you use? What about dish soaps?

[itchy]

Mikyraso First off, it sounds like you might still be eating too much gluten. Many people with Dermatitus Herpetiformis don't have as bad gastro intestinal symptoms as other coeliacs, so find it easier to control GI problems with reduced gluten. But unless your gluten intake is very near zero, you will continue to have DH. That was my experience.

So getting your gluten intake to zero has to be a priority I think. I quickly noticed the reduction in itching when I did that, but it still took months to get to really tolerable levels. It can be a very long process.

After three years of strictly avoiding gluten the only lesions I have left are on my scalp, so I'm investigating whether shampoos could be a problem. I occasionally have skin contact with wheat since I work in agriculture, and have never noticed an effect. But shampooing involves wet skin, where gluten would likely be absorbed more. So I've switched to a 'gluten free' brand. I can't comment on the brands you use, but others will.

Good luck!

[Razzle Dazzle Brazell]

Thanks for responding. RDB Phew long name but I love it !!. The symptoms you mention is what I have been experiencing. but my soars are on the I have been using Finesse S & C, Vo5, or Baby Shampoo. I have been using gluten-free dish soap, Baby Wash or Dove soap. I stopped all other hair products around the 1st of July. What hair care products do you use? What about dish soaps?

I recently went through it so I use a mix of baking soda and water to wash my hair. I wash my dishes with dawn and do not seem to have a problem with it. I wash my hands with dawn as well. It lasts a lot longer and I do this because I do not have the money to buy all the specialty products right now.

[squirmingitch]

mikyraso,

Okay, your blood & endo came back negative. That does NOT mean that you DO NOT have celiac. There are a lot of false negatives & we could get into all the reasons why --- such as the doc didn't do the FULL celiac panel & the doc didn't take enough biopsies etc..., etc..., etc.... & were you gluten free or gluten light at any time before the tests & had you been on any steriods in the 2 - 3 months prior to testing & more. But we won't go into all that. And now, we're going to throw a curve ball into the mix. IF your rash is dh then that would go a long way toward explaining the negative test results regardless of all the aforementioned factors I listed. You can read about those reasons here --- it's a long read, I know, but there's a lot of good info. in there.

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

Also, in that post & it's links you will find that you MUST be actively eating gluten for the DH BIOPSY. And that's why your biopsy will turn up negative. Even if you have had gluten once a month it's not going to be enough to show up in the dh biopsy. And if it does then I'll eat my hat.

So, now you get to try to decide if it's dh or an allergy to something else. There is one thing you can do to try to rule dh out. And that is go low iodine for 2 -3 weeks. DH almost always responds to low iodine & nothing else will. Here's a link for low iodine diet:

Open Original Shared Link

If you do that & your rash improves greatly & then you go back to iodine & the rash gets worse --- you have your answer. AND if you do have dh then you ARE a celiac. That is also spelled out in the first link. OR you can try the fast track & eat a whole bunch of shellfish like shrimp, lobster & if your rash goes nuts then you pretty much have your answer as seafood is very high in iodine.

[mikyraso]

mikyraso,

Okay, your blood & endo came back negative. That does NOT mean that you DO NOT have celiac. There are a lot of false negatives & we could get into all the reasons why --- such as the doc didn't do the FULL celiac panel & the doc didn't take enough biopsies etc..., etc..., etc.... & were you gluten free or gluten light at any time before the tests & had you been on any steriods in the 2 - 3 months prior to testing & more. But we won't go into all that. And now, we're going to throw a curve ball into the mix. IF your rash is dh then that would go a long way toward explaining the negative test results regardless of all the aforementioned factors I listed. You can read about those reasons here --- it's a long read, I know, but there's a lot of good info. in there.

http://www.celiac.co...-reading-on-dh/

Also, in that post & it's links you will find that you MUST be actively eating gluten for the DH BIOPSY. And that's why your biopsy will turn up negative. Even if you have had gluten once a month it's not going to be enough to show up in the dh biopsy. And if it does then I'll eat my hat.

So, now you get to try to decide if it's dh or an allergy to something else. There is one thing you can do to try to rule dh out. And that is go low iodine for 2 -3 weeks. DH almost always responds to low iodine & nothing else will. Here's a link for low iodine diet:

Open Original Shared Link

If you do that & your rash improves greatly & then you go back to iodine & the rash gets worse --- you have your answer. AND if you do have dh then you ARE a celiac. That is also spelled out in the first link. OR you can try the fast track & eat a whole bunch of shellfish like shrimp, lobster & if your rash goes nuts then you pretty much have your answer as seafood is very high in iodine.

*THANK YOU for giving me GREAT advice. I will check out the link about Iodine. Guess what. I got the call back from the DRs. and you were right. NEGATIVE. The Dr wants to send me to a specialist from Rochester University (Roch. NY) because he hasn't been able to treat my eczema (I have it in my ears) and he doesn't know what to do. I don't know what to do,UGH!!! I have had the problem with my ears since I started wearing glasses. I was 18 months and now I am 44. I don't get more that 1-2 weeks of relief with ANY treatment. I can't tell you how many drops and creams i have had. One dr used to fill my ear canals with a Steriod cream. Well that didn't do much of anything. I have continual drainage and the skin just keeps flaking and ITCHING.

In June , prior to the rash on my neck and my scalp itching , the last gluten I consumed was 1 animal cracker and a xsm. order of FF from Mc D's. . With my IBS I had been able to consume VERY small amounts of gluten ( maybe a 1 cracker) per MONTH. In May I had deck of cards size piece of pizza. That was all I had in the entire month. And it is NOT every month I eat gluten. I have a DD with confirmed celiac disease and I am VERY CAUTIOUS of what is IN the house and around her. I also know that if I more than a BITE or 2 of ANYTHING NGF I can get bad symptoms. This newest curve ball has me TOTALLY stumped.

Thanks again.

[squirmingitch]

It certainly sounds like you have symptoms of celiac especially with your daughter. I remember reading & maybe answering some of your earlier posts but can't remember your history. You just helped with that.

I get the dh in the curves of my ears but have not had it deep inside my ears. I also wear glasses & it drives me insane as the dh gets in my scalp right where the temples of the glasses sit & it also gets on the back sides of my ears. DH is known to frequent pressure points --- guess what glasses do at the temples?

Put off the appt. in Rochester until you can test the theory some???????

[squirmingitch]

You know, you CAN have eczema AND dh at the same time. Celiacs tend to have things like eczema, psoriasis & other skin problems.

I've been thinking about your situation & maybe you ought to see that specialist. Start right now taking photos of the rash & along the way the progress going low iodine & take the photos with you to that specialist. And make sure & tell him your gut symptoms when you eat gluten as well as your DD's dx. He may just dx you based on those things. It DOES happen from time to time.

Now, about the low iodine --- each of us are individuals & so we respond as individuals to low iodine. That's why I said stay on the low iodine for 2-3 weeks. Example: I begin to get itch relief in about 3 days low iodine (li for short) & then around day 7 my places are actually healing pretty rapidly. Now, my hubs takes about 7 days before he starts calming down & about day 10 his places begin to improve in looks. AND li doesn't always make ALL my skin clear up like magic ALL the time but if it's dh you should definitely see marked improvement.

[ciamarie]

I thought I'd jump in here, since I read that you have it (a possbile DH or other rash) in your ears. Me too! However, I can finally say that it's just about under control, after about 2 1/2 years. Long story short, in addition to being totally gluten-free, I also discovered that both MSG and sulfites aggravate it. Ditching the gluten (and going low iodine too) helped a huge amount with the itching, but the drainage and swelling took the elimination of those other 2, also.

[YoloGx]

I agree--its likely you need to be completely off all trace gluten, at least that is what I have had to do to feel better. A bite of gluten something once a month really is likely too much, honestly. For years I was mostly off gluten, but had no concept that there even was trace gluten out there. But it was messing with me big time, and eventually brought out other problems that greatly exacerbated my skin conditions--not to mention making me catch every bug that came down the road. As it turns out besides celiac I also have extreme intolerance to salicylates, amines, oxalates and now tannins. Slowly I am learning how to deal with this and am making progress. I have gotten some great advice on the Saliyclate Sensitivity Forum.

Like Ciamarie suggested, a food diary could help you immensely.

By the way, I have the flaky itchy ear problem too. I was given some real horse like strong antibiotics and it only made me worse. For me these "itchy b%$@#ies" that were driving me crazy is a combination of salicylates and oxalates. Unfortunately here in the States no doctor helped me. I had to figure it out on my own with the help of the Salicylate Sensitivity Forum and a few other sites like Robotgirl's description and listing of the Australian RPAH Failsafe diet.

I also get hives which seems to be more of an amine and oxalate problem. I have yet to figure out the sulfites--which maybe is my next hurdle though I pray that is not yet another culpret. I do well however taking MSM which helps with the sulfation pathways and thus have no problems eating cabbages etc. But Ihavenever done well with packaged foods, which i s a sign sulfites could be a problem.

However, along those (sulfation) lines, I have gotten great relief taking epsom salt baths, as do many with these problems. I also regularly having bentonite clay sprinkled on water and let sit for 4 to 7 hours or more before stirring and drinking, along with freshly made psyllium husks. This is a great detoxifier of bacteria, chemicals, radiation etc.; IMHO it is necessary to have something to help detox your liver since when your skin gets like yours and mine nearly always there is an overtaxed liver in the picture.

Going off or reducing your intake of heavy meats too might be a good idea in this arena too since sometimes it gets clogged up with cholesterol balls trying to capture all the errant stuff that your liver has to deal with as a result of likely leaky gut. Another factor can be chemical or radiation overexposure that can lead to real liver and skin problems. I always thought leafy greens were the answer, but now I realize they need to be the right leafy greens or the greens can actually precipitate skin problems courtesy of salicylates, oxalates etc.

Taking omega 3 fish oil can be very healing (I order Twinlabs cod liver oil from iHerb and immediately pour it into a wide mouth bottle and freeze to avoid the amines). Amines form from any food that is not absolutely fresh...especially meats and fish, not to mention food purposely aged like the worst being sauerkraut and cheeses. Thankfully I now can eat home made yogurt again.

Products like Histame can be very helpful. As can Kirkman Labs Phenol Assist. Probiotics are a must, but difficult if you have amine sensitivity. I found one that works that is casein/lactose and other common allergen-free is Kirkman's lactobacillus duo.

Well I have inundated you with possibilities I know. But better some things to investigate than to feel nothing can be done... Plus these days I don't get on this site that often.

[mikyraso]

I agree--its likely you need to be completely off all trace gluten, at least that is what I have had to do to feel better. A bite of gluten something once a month really is likely too much, honestly. For years I was mostly off gluten, but had no concept that there even was trace gluten out there. But it was messing with me big time, and eventually brought out other problems that greatly exacerbated my skin conditions--not to mention making me catch every bug that came down the road. As it turns out besides celiac I also have extreme intolerance to salicylates, amines, oxalates and now tannins. Slowly I am learning how to deal with this and am making progress. I have gotten some great advice on the Saliyclate Sensitivity Forum.

Like Ciamarie suggested, a food diary could help you immensely.

By the way, I have the flaky itchy ear problem too. I was given some real horse like strong antibiotics and it only made me worse. For me these "itchy b%$@#ies" that were driving me crazy is a combination of salicylates and oxalates. Unfortunately here in the States no doctor helped me. I had to figure it out on my own with the help of the Salicylate Sensitivity Forum and a few other sites like Robotgirl's description and listing of the Australian RPAH Failsafe diet.

I also get hives which seems to be more of an amine and oxalate problem. I have yet to figure out the sulfites--which maybe is my next hurdle though I pray that is not yet another culpret. I do well however taking MSM which helps with the sulfation pathways and thus have no problems eating cabbages etc. But Ihavenever done well with packaged foods, which i s a sign sulfites could be a problem.

However, along those (sulfation) lines, I have gotten great relief taking epsom salt baths, as do many with these problems. I also regularly having bentonite clay sprinkled on water and let sit for 4 to 7 hours or more before stirring and drinking, along with freshly made psyllium husks. This is a great detoxifier of bacteria, chemicals, radiation etc.; IMHO it is necessary to have something to help detox your liver since when your skin gets like yours and mine nearly always there is an overtaxed liver in the picture.

Going off or reducing your intake of heavy meats too might be a good idea in this arena too since sometimes it gets clogged up with cholesterol balls trying to capture all the errant stuff that your liver has to deal with as a result of likely leaky gut. Another factor can be chemical or radiation overexposure that can lead to real liver and skin problems. I always thought leafy greens were the answer, but now I realize they need to be the right leafy greens or the greens can actually precipitate skin problems courtesy of salicylates, oxalates etc.

Taking omega 3 fish oil can be very healing (I order Twinlabs cod liver oil from iHerb and immediately pour it into a wide mouth bottle and freeze to avoid the amines). Amines form from any food that is not absolutely fresh...especially meats and fish, not to mention food purposely aged like the worst being sauerkraut and cheeses. Thankfully I now can eat home made yogurt again.

Products like Histame can be very helpful. As can Kirkman Labs Phenol Assist. Probiotics are a must, but difficult if you have amine sensitivity. I found one that works that is casein/lactose and other common allergen-free is Kirkman's lactobacillus duo.

Well I have inundated you with possibilities I know. But better some things to investigate than to feel nothing can be done... Plus these days I don't get on this site that often.

PHEW!!! That is a lot. But thank you. It is better to have more avenues to explore and then see if they are possible culprits. I like having more info than not having any where to look. Again a big thank you for all the advice. One more question for you. I think you are so right when it comes to having even one bite. I should know better but sometimes I just seem to not be able to control myself. I thought that it was OK but now with all this happening I realize that I can't have a moment of weakness. Thanks for the wake up call.

[mikyraso]

Mikyraso First off, it sounds like you might still be eating too much gluten. Many people with Dermatitus Herpetiformis don't have as bad gastro intestinal symptoms as other coeliacs, so find it easier to control GI problems with reduced gluten. But unless your gluten intake is very near zero, you will continue to have DH. That was my experience.

So getting your gluten intake to zero has to be a priority I think. I quickly noticed the reduction in itching when I did that, but it still took months to get to really tolerable levels. It can be a very long process.

After three years of strictly avoiding gluten the only lesions I have left are on my scalp, so I'm investigating whether shampoos could be a problem. I occasionally have skin contact with wheat since I work in agriculture, and have never noticed an effect. But shampooing involves wet skin, where gluten would likely be absorbed more. So I've switched to a 'gluten free' brand. I can't comment on the brands you use, but others will.

Good luck!

Do you ever eat out? I ask this as now I think I am scared to even try to go out with my family. What brands of shampoo are you using? I have looked at the ingredients, and have looked up on-line gluten-free hair products. The ones I use don't appear to have gluten containing ingredients. I also was concerned with my shampoo and conditioner. but I think what I am using is OK. One of my big concerns is pet foods and treats. I looked at the dog bones my husband bought and oticed the first ingredient is wheat. so now I told him we need to buy gloves so my daughter and I can feed the dog. I don't know if you have pets but if you do ( or anyone who reads this) what brands of pet food and treats do you use?

and don't see

[squirmingitch]

First --- I use Suave Naturals shampoo & conditioner --- gluten free, works great for me & cheap too. I think Dove is also but you would have to check that. You can always call companies & ask them. You can also put shampoo in the search box here on the site & will come up with a gazillion threads on the subject & find choices.

I will not eat out yet. I don't want to take a single chance at this stage of the game. Others have said & it's true --- eating out is always risky. You might be okay with having a whole baked potato but don't let them cut it open --- YOU cut it. Buffets are a humongous red flag!!!!! You could have a salad but you have to make sure no croutons touched it & bring your own gluten-free dressing. If they bring your salad & there are croutons on it they have been known to go back & just pick the croutons off & bring it back to you. That's a NO - NO! So here's what you do to make sure they didn't do that. Either dump dressing all over it so when they bring you one you know it's not the one which had croutons on it OR you can bury a sugar packet under the salad; then when they bring the salad back you can check for the sugar packet --- if it's there; you know they just picked the croutons off. With dh, the tiniest glutening or cc will put new IgA in your skin which can add months to your recovery time.

Dogs, cats & other furbabies: You really should feed them gluten free food, treats & such. IMHO gloves are not enough. Animals lick themselves & you with their gluten mouths & tongues so the only way to prevent contamination is to feed them gluten free. BTW, Dogs are allergic to wheat, corn & soy & especially the gluten in them. My dog was gluten free from the day she arrived at our house --- long before we discovered we had celiac disease. There are gluten free foods on the market out there. You can either go totally grain free with the dog or you can feed a formula such as Lamb & rice etc.... just make sure to read the ingredients & ensure there is no wheat, barley, rye, corn or soy in it. I might add that you will most likely be amazed at how your dogs health improves & how the dog doesn't scratch anymore! There are also grain free treats out there or you can give them rice chex for a "cookie". Even if it's a big dog it will get used to just getting a couple rice chex. For bones -- the real thing is always the best option. Or you can get deer antlers --- dogs love chewing on those. Forget the hooves though (cow or otherwise). You can also put dog food in the search box here & find some threads.

[mikyraso]

It certainly sounds like you have symptoms of celiac especially with your daughter. I remember reading & maybe answering some of your earlier posts but can't remember your history. You just helped with that.

I get the dh in the curves of my ears but have not had it deep inside my ears. I also wear glasses & it drives me insane as the dh gets in my scalp right where the temples of the glasses sit & it also gets on the back sides of my ears. DH is known to frequent pressure points --- guess what glasses do at the temples?

Put off the appt. in Rochester until you can test the theory some???????

My appt. in Rochester is not until the end of Oct so I have time to give the low-iodine diet.I have a question for you. Should I be seeing a derm.or a different specialist? Oh and you mention having DH behind you ears. When I very young, say 5,6, maybe even 7 (i just remember I was in school ), it could have even been earlier . I had something on the back of my ears. I remember it was as if someone took a knife and slit the skin open from the top of my ear to the bottom. I remember it hurt so much. I don't remember at what age the dermatitis (?) when into my ears. but I was probably 12.

I need some advice BOTH my daughters are itching their scalp :1 w/celiac disease one NOT ( she has had a celiac disease blood work.) Both girls see the same GI doc. He did NOT perform the endo the confirmed celiac disease. I don't what to do. What would you do?