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Itching, But Not Eczema, Or Dh, Or Shingles,....
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36 posts in this topic

Very interesting article Lisa. Thanks for posting that.

And our OP said she was going to the doc on Wednesday. Today's Thursday. Any news OP? How are you doing?

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Okay, I saw the nurse practitioner, but by that time, with legs itching also, it was showing up as a serious rash and it is eczema.... but it had to manifest the rash-like red areas for that to be apparent. at first it was just a mild rash on my belly, but that cleared up as the legs (mostly below the knee on the back of the calf) began to itch.

The only medications I take are asthma meds. I have no other conditions that require prescription medicine.

I take a variety of vitamin supplements, all labelled as gluten-free.

I have an appointment to see a dermatologist in a couple of weeks.

The nurse practitioner prescribed (a corticosteroid) mometasone furoate cream, which (naturally) has a positively horrifying list of adverse reactions, not to mention ingredients that give me pause.... but I am giving it a try, having applied the second dose (one application a day). My legs still itch, but I have discovered that gently rubbing them makes them feel better for a few minutes at a time.

But I am trying to not touch the affected area too much.

I have found all of your replies interesting and somewhat helpful.... thank you all. I will return with more information as the condition changes.

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A few things:

1. Well, you already saw someone and a rash has developed, but if you feel bad otherwise, getting your liver checked out isn't a bad idea.

2. I don't have any DH per se, but I get itchy mildly skin especially during the winter. So far this year (first year being gluten-free), it's much better. I do get occasional itchy bumps on my forearms, but only ever 1 at a time, and happens maybe once a month. That has developed over the past few years.

3. My sister has had serious eczema most of her life. She knows a few things that have pretty immediate effects on it; yellow food dies (tartrazine for sure, maybe others) and oats are things which come to mind. You may have other food allergies/intolerances causing it.

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I was given a prescription of Mometasone Furoate Cream 0.1%. That helped a great deal. After 2 weeks the skin in the affected areas is still pinker than the surrounding skin, but no more itch after the second day's application. I was also advised to take an antihistamine, and have been doing that also.

I have an appointment with a dermatologist, later in January.

This started as severe itching on my stomach, above the belly button. Then it switched to the lower legs, not exactly 'symmetrical', but my lower legs are where the red 'rash' appeared and both legs are still very pink, but not itching at all at this time.

The only medications I take are for asthma, I am not on any kind of cholesterol meds, no thyroid problems at all (ever), no diabetes, the only conditions I am aware of as of this writing are the asthma and the celiac disease.

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I use the mometasone furoate for my psoriasis. It works wonders!

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i haven't been officially diagnosed with celiac, in process of getting test results. but i do have this one spot on my back that itches and it is the same exact spot all the time and i have no rash either. it's unexplained. but then again i get hive breakouts if i do not take my zyrtec, but that one spot itches even if i do take my zyrtec. my hives were a mystery from the allergy dr, but i saw my primary yesterday and he said it could be related to celiac. however i did forget to mention that one annoying spot on my back that constantly itches.

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It is possible to have shingles without the rash. Just the intense burning/itching. It's called zoster sine herpete.

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In years past I have had horrible itching primarily on my legs. There was never anything to see, no rash, nothing. The doctors were always kind of puzzled. They would say "dry skin" --but upon examination it was not dry skin either. There never seemed to be an answer.

I did a lot of hunting for reasons, looked up a lot of things on the Internet, looking for clues or hints of what to do.

Once I found out that itching is one of many symptoms that can be related to hypo-glycemia. That led to me learning that I was ingesting an awful lot of sugar from many sources in my diet. I immediately cut back on anything with sugar listed as an ingredient. I did not use much sugar other than whatever sugar was an ingredient in some food item. Initially cutting back on sugar really did help with the itching. I got through an entire winter with less itching as a result. However this did not carry on into the next winter --despite decreased sugar intake the itching was back.

I struggled with the itching for a few more years and then decided that maybe it had something to do with wheat. I no longer recall what kind of article or website I read that led me to this decision. Anyway, what I did next was to try a 'rotation diet' --I cut out all breads and pastas for 3 or 4 days in a row --the itching went away after about 3 days. So, at that time I thought a rotation style diet was the answer and that worked for me for a couple of years.

Then I had the colonoscopy (and endoscopy) and they took the biopsy. I got the call from the gastroenterologists office about 5 days later telling me that I had sprue and then that it meant celiac disease. It was what I was afraid of and at the same time I was not at all surprised --because of that rotation diet!

Anyway, after over 20 years of rather obvious symptoms I had nearly diagnosed myself.

All that time I was afraid of having something like celiac disease, but all that time I was gradually modifying my diet too. That I why I have said that going gluten-free was not so bad. It was not that difficult for me, because I had already eliminated so many things from my diet --things that made me not feel good. But I also look at the diagnosis as a kind of a "gift" because I had a lifelong love of pasta and now I can eat rice pasta and corn pasta, and I have eaten more pasta (both rice and corn) since going gluten free than I had eaten in the 4 or 5 years before being diagnosed. (I am gluten free since January 1, 2012, by the way.)

So, that is one part of my story of my journey to the diagnosis and to a more gluten-free lifestyle and to feeling so much better.

There's a lot more --other parts of the story for me, going back at least 33 years and maybe an entire lifetime.

(I had the colonoscopy because I had reached that age when they recommend having it done -50).

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interesting story, jean. i've had hives off and on for maybe 35 or 40 years - i used to take Atarax but it knocked me out cold. i've taken all the usual antihistamines for them. haven't had them now in maybe 5 years, and am just 2 months gluten-free.

the things that i know make me itch like mad include

1) citric acid. it's the worst! check out your lotions, soap (especially if you use any liquid soap), shampoo, and food. any food fruit-flavored usually has it - all jams, fruit candies, tons of foods have it as a preservative, even spaghetti sauce, rice mixes, cereals, chips, and tomato sauce. i get a rash like poison oak from it - the shampoo is really bad and it's in most regular commercial shampoos. Finesse doesn't have it. i can also break out other places than where it actually touched. my face shows it if i ate any.

2) something in some laundry detergents. i don't know what ingredient it is, but i stick to Tide, Wisk and Arm & Hammer and I'm ok.

3) nitrates, paprika, smoke flavoring - i started breaking out from bacon when i was 9. smokehouse almonds make my face turn red in a matter of minutes. all peppers & their products do that too.

4) i had 5 years of evil reactions to Becanase, which is a nasal allergy spray, before i figured out that was the culprit. i mention that because of your asthma. Who would think that an allergy treatment could make you sick? I get angio-edema from it - hives in the tissues under your skin. my tongue used to swell up all the way down into my throat, but only one side. i would wake up with it swollen - thought i might die from that! my hands and feet would swell up so much that the skin felt like it was going to break open. i couldn't walk or wear shoes. it would last for a couple of hours and then go down, but then my skin was all stretched out and hurt like anything.

because of that, i would check your asthma meds - read all the fine print on the package insert for the side effects and see if itching is listed. i found angio-edema listed as a "rare" side effect, meaning one person in 1,000 would have it (YAY!) and when i saw that, i contacted the pharmacy to find out when i started taking the antihistamine prescription for it. that was 3 months after i started using the Becanase. When i took it to the allergy doc, he LAUGHED and said it wasn't possible. good thing i didn't kill hiim then! then he went and called the manufacturer and came back and said it was remotely possible i was reacting to a preservative in it. obviously, i haven't used it since, probably another 5 years, and i haven't had angio-edema a single time since.

i don't know anything about the DH except that the celiac specialist i'm seeing said that she has been gluten-free for 6 years and her legs still itch. she said getting the IgA out of your skin takes longer than from anywhere else in your body. i think it can be anywhere, but the characteristic places are knees, legs and elbows, front and back.

anyway, a few more things for you to consider in solving your mystery itching.

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Well, I finally saw the allergist. After I told him what I like to eat and what I had already known I was allergic to he tested me for things I like to eat. And he also tested me for the things I already knew I was allergic to. (I wonder what that will cost me...)

Apparently I have sensitivity to eggs and nuts. Two things that never seem to have bothered me --ever, at all. So I am more unhappy

now that I know this!

Here I was, happy that I could at least eat eggs and nuts. Now I have to avoid them, at least for a few weeks.

When I see the allergist again I am going to ask about this. The sensitivity to eggs and nuts was at the 'low' end of their scale for sensitivity, so I want more information! I have always (ALWAYS) gotten a flu shot, every year since I was 18 and now I am suddenly sensitive to eggs! what is up with that!

Meanwhile, I still itch, but there are not any breakouts, no hives, nothing to see. Just some burning itching.... of course it is worse because I had to stop taking the antihistamine because I have a bad head cold and I really need drainage to happen.

So, I am stuck between a rock and a hard place, rubbing instead of scratching, and trying not to lose my mind... trapped indoors all winter long.....

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itching again..... winter, so predictable....  this time I think it has to do with perhaps one of the following:

sugar

corn products

dairy (I sure hope not)

tea? caffiene?

 

this morning I have had my supplements, things I have taken daily for year and years with no symptoms that I am aware of.

I have had water.  I was hungry, so I ate some sweet potato "pancakes" with butter and brown sugar.  

 

It appears that the itching is dissipating after 72 hours of suffering.....  so now I am not sure how to proceed.....  I will drink more water throughout the day, and see if the itching continues to go away.....   My current plan is to probably have some ground sirloin and rice for dinner, maybe with some cheese....

 

Please, God, please let the itching go away. please.

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    • I had quite a few of the medical problems that you have before I figured out that gluten was the problem. I can’t do basic math or writing when I eat gluten also I get depressed, irritable, low energy, etc. The best route to go is to do an elimination diet and monitor how certain foods affect you. I eliminated MSG (Monosodium Glutamate), Nitrite, and oat based on the reactions that I get once I consume them. You must be disciplined on a gluten free diet, there is not such a thing as –It is just one cookie! If you can manage to go 100% gluten-free for three weeks and you see those problems going away, you will have a good idea if that is the cause of your problems. The blood test I did after being gluten-free for two years came back negative so the doctor just make me feel that I was crazy and making things up. I have a stool test done which came back with elevated igA also a gene test indicating I have two genes that code for gluten sensitivity. My lactose intolerance went away too, eating a lot of cheese now. Rash in arms? gone, Brown spots in teeth? Gone, Intestinal noises? Gone, Lack of bladder control? Gone, Constipation? Gone, and a lot others.   
    • Oh you're most welcome!  Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
    • Thank you so much for responding, it's so hard to go on this journey of questions and Drs. I really appreciate the time you took to respond. God bless you 💖
    • Do you have copies of your blood test results? Can you post them? Don't forget to list the reference ranges. Is the TTG the only celiac test they did?  Do you have a copy of your pathology report? Get it if you don't. How many biopsies did they take & from what areas? Were you eating gluten right up until the biopsy?
    • I got them on the back side of my knees too. All the literature points out knees & elbows but doesn't mention the "behind the knee" portion of your leg. I eventually got them ON the knees itself but that was one of the last places to present. I also got them on the inside bend of my arm instead of the elbow and just like the knees, it eventually presented on my elbows. Not to be forgotten; the literature also states it can present anywhere on the body. If you found those links I've posted about how a dh biopsy is done correctly then print them out & take them with you to SHOW them. Any derm should be able to follow the directions or they should turn in their license.  As to them saying herpes, well duhhhhhhhhhhhhhhhhhhhh, dh does have a herpes like presentation. That's why they call it dermatitis herpetiformis! Remember, they work for YOU, not the other way around. Insist. Make sure you're still eating gluten. Let us know how it goes. The best of luck to you!
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