Can't stop the itching!!!

[crissy92]

Hello all... keep in mind that as I type this, I'm rubbing my back on the back of the couch slowly, intermittently stopping to itch an annoying spot above my knee and on my wrist. I had a blood test for Celiac and common food allergies such as wheat, egg, nuts, etc... , but it came back negative. Of course, I had already been gluten-free for about 2 weeks by then. 

At first, in beginning of December, I had hives and itching that started on my back (shoulder blades and in-between, and lower back). Then it joined with my elbows and knees. Then my hips. Always symmetrical. Went on 2 rounds of steroids, which I finally got done with about a week ago. Some days the itching is worse than others. But equally as annoying. Sometimes I feel as if I'm going to scratch a hole in my own skin. Probably wouldn't help!!!! The only relief I can get is if I put a cold washcloth on the area, but it goes somewhere else. Maybe I should move to Antarctica... lol

I have an appointment with a food allergist for a pick test on January 12th. Should be interesting. I'm still gluten-free. I know that the hives have calmed down significantly. And I know I definitely feel better gluten-free. Even if it's not Celiac or a food allergy, I will continue to eat gluten-free. But has anyone here had this happen to them? I've read a few posts from people that have had an annoying itch for months or years after being diagnosed and going gluten-free, but they're no longer on here. 

Any input would be greatly appreciated. Just knowing someone is in my shoes, as well. 

Thanks, 

Crissy

 

[squirmingitch]

Go read threads in the dh section.

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

Sorry I can't spend more time explaining. I have some crises going on in the house right now.

[captaincrab55]

Have you seen a Dermatologist??      I suffered for over 50 years, before I was diagnosed by the 4th Dermatologist in 30 years.      They need to do a biopsy next to your break out.    A simple iodine test will usually indicate that you have DH or an iodine allergy, maybe both.    Pt iodine on the bandage part of a band aid and apply it to your skin for several hours.     DH will usually cause a rash.

 

[Celiac Nutritionist]

Sorry to hear about all your itching!   Your body sounds like it may be having a histamine response to something(hives etc.)....   The histamine response can be increased / much more irritating if you are even slightly dehydrated.

So drink up!  (2-3 litres a day- and see if anything changes!)

When you first went gluten free was the itching the only reason, or what led you to taking gluten out of your diet before diagnosis?

 

[crissy92]

17 hours ago, squirmingitch said:

Go read threads in the dh section.

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

Sorry I can't spend more time explaining. I have some crises going on in the house right now.

Thank you for the info, Squirming! I hope all is better today!

[crissy92]

15 hours ago, captaincrab55 said:

Have you seen a Dermatologist??      I suffered for over 50 years, before I was diagnosed by the 4th Dermatologist in 30 years.      They need to do a biopsy next to your break out.    A simple iodine test will usually indicate that you have DH or an iodine allergy, maybe both.    Pt iodine on the bandage part of a band aid and apply it to your skin for several hours.     DH will usually cause a rash.

 

No dermatologist. Yet. I do have an appt with an allergist on the 12th to do the pick test, so we'll see how that goes. Uggghhh... 50 years? That's horrible! I'm so sorry to hear that!

[crissy92]

11 hours ago, Celiac Nutritionist said:

Sorry to hear about all your itching!   Your body sounds like it may be having a histamine response to something(hives etc.)....   The histamine response can be increased / much more irritating if you are even slightly dehydrated.

So drink up!  (2-3 litres a day- and see if anything changes!)

When you first went gluten free was the itching the only reason, or what led you to taking gluten out of your diet before diagnosis?

 

Thank you for your info! I first started eating clean and then ate something that was not one day, apparently. That started the hives and itching, itchy throat, slightly tight feeling in my throat, upset stomach. I couldn't take the itching and went to the ER. They gave me prednisone and sent me on my way after confirming it wasn's Scarlet Fever by doing a throat swab for strep. Negative. Went on second round of steroids when the first round was finished because the rash came back with a vengeance. Reg dr did celiac panel and common food allergies blood work, along with liver, heart, etc... panels which were all negative. My eosinophils were high, though, which she told me means I'm allergic or sensitive to something. Now the question is what? I told her I remember when I was little, I'd always have itchy bumps on my elbows and knees that eventually went away as I got older. Now they're back. With a vengeance. And all over my body except my face, neck, and scalp. (Thank God!) My 9-year old son used to get the same bumps as me in the same areas, but ironically, they just finally went away as I got mine back! How weird is that? But now I'm wondering what they're from, especially since I'm still itchy!!!!!

[CherylS]

I have an itchy rash too.  I also tested negative on celiac testing, but positive on genetic.  I've read it's somewhat common for people with DH to test negative to celiac testing.  I just got biopsies and will hopefully know something next week.

 

[crissy92]

3 hours ago, CherylS said:

I have an itchy rash too.  I also tested negative on celiac testing, but positive on genetic.  I've read it's somewhat common for people with DH to test negative to celiac testing.  I just got biopsies and will hopefully know something next week.

 

Cheryl, does your itch come and go for "no apparent reason?" For instance, this afternoon, when I came home from work, I couldn't stop itching the back of my knee and hip on one side and my side on the other side. A few hours later, like now, and I'm not itchy, just a little "tingly" here and there. It's so weird. Although, yesterday I ate supposed gluten-free banana cake (packaged) and a gluten-free choc chip cookie (single package). I'm starting to doubt it's "non-gluteness." lol About 24 hours later and I feel a little better. Before I ate those yesterday, I was still itchy here and there, but nothing like lastnight up until this evening!

[CherylS]

Usually when I itch, it doesn't go away.  I usually get the itch and bumps on my abdomen and shins, sometimes fingers and toes. The best way I can describe it is if fire ants were biting me and someone wrapped saran wrap around it.  It's a burning itch and scratching makes them sting, especially if they open up and are exposed to air. It's a no win.   I may not even have celiac so who knows.

 

[Celiac Nutritionist]

Crissy,  are the bumps like little blisters?  Have you had a chance to read about some DH?       

Although common for DH patients to test negatively on Celiac tests, they should still avoid gluten entirely.

Just to clarify then, you have not been diagnosed with Celiac then?   (referring to the ER dr. running tests - or have you previously been diagnosed?)

Try cutting out all grains (even gluten-free) and processed foods for 7-10 days (or if you can handle it, a few weeks!) and see if you notice a difference.  When you re-introduce the grains, record what you eat so you can look back to see if anything particularly "triggered" it.  

[ravenwoodglass]

Not sure when you were tested in relation to the steriods but steriods may give you a false negative on testing.

It you are celiac you may show up positive to a lot of stuff on the allergy testing that may resolve on the diet. I tested positive to 98 out of 99 things I was prick tested for by my allergist. He later explained that my immune system was in 'hyperdrive' because of the celiac and that once I healed I would likely loose many of the allergies. He was right as all but two allergies resolved.

I had both DH and hives.  The hives were large bumps that would fade in a relatively short time. DH presents with small blisters and symetrically. I also found cold cloths to be the best defense for the itching. Also if they are hives benydryl (sp?) should give some relief. The name brand last I checked was gluten free. 

I hope you get some relief soon.

 

[GFinDC]

Hi Crissy,

DH( dermatitis herpetiformis) is a skin rash associated with celiac disease.  They test for it by taking a biopsy sample of the skin next to a blister.  The condition causes itching when IgA deposits are in the skin.  Like Squirmy said, the regular blood tests for celiac disease sometimes don't catch DH.  Maybe because the immune cells are found in the skin instead of the blood.

Iodine is problem in DH reactions.  So you may react to foods that are gluten-free but have iodine in them.

 

[crissy92]

On 1/9/2016 at 5:45 AM, ravenwoodglass said:

Not sure when you were tested in relation to the steriods but steriods may give you a false negative on testing.

It you are celiac you may show up positive to a lot of stuff on the allergy testing that may resolve on the diet. I tested positive to 98 out of 99 things I was prick tested for by my allergist. He later explained that my immune system was in 'hyperdrive' because of the celiac and that once I healed I would likely loose many of the allergies. He was right as all but two allergies resolved.

I had both DH and hives.  The hives were large bumps that would fade in a relatively short time. DH presents with small blisters and symetrically. I also found cold cloths to be the best defense for the itching. Also if they are hives benydryl (sp?) should give some relief. The name brand last I checked was gluten free. 

I hope you get some relief soon.

 

Hi Raven, I actually WAS on steroids at the time I had the blood test for celiac and other food allergies. And I did read that a couple different places on the internet, but my dr said it didn't matter. But she's my family doc. Not a specialist. (But I still like her... lol).

I've been gluten-free for about 6 weeks now. My stomach has decreased in size and I don't feel so bloated all the time in that area. Besides my hives that have come and gone, my skin is a little different, as well. The backs of my arms, ankles and calves, and buttocks are smoother now instead of dry and bumpy. My son has the same type of skin on the backs of his arms, like "chicken skin."

My hives are the same, although today and yesterday, I'm not really itchy at all! Yay! But I haven't eaten anything PACKAGED, either, except a Kind bar both days. The other night, I ate a whole bag of microwave popcorn while at work, and also had a gluten-free packaged banana cake and a gluten-free cookie. That night and next day until the evening, I was soooooooo incredibly itchy! I'm starting to think one or all of those were the culprits. Who knows. Until I have the allergy test done, it's a guessing game right now. And I haven't been able to take any type of antihistamine for 7 days prior to my allergy test, which is on Tuesday. Grrrrrrrrr..... 

[GFinDC]

How's it going Crissy?  Did you have your allergy testing?  Gluten intolerance is not really an allergy, but it is good to be tested for allergies also.  Lots of people have allergies after all.  It sounds like you have started an elimination diet of sorts.  And it is possibly helping.  An elimination diet is a good tool to identify food reactions that doctors can't identify.   There's various ways of doing elimination diets, some are faster than others.  One thing to keep in mind is that our bodies can react to more than one food.  So it is good to keep doing on an elimination diet for quite a while, and not stop after the first positive result.  Because there could be other foods that cause reactions also.  IF you stop too soon, you may have to start over when you react to something you didn't identify the first time around.

I am sure your doctor will explain all of this though...not!

 

 

[AK Mike]

Crissy, I agree with the nutritionist, drink water. Also have you picked the brain of the allergist to see if they are comfortable working with celiacs? If so, ask for the DQ2 and DQ8 marker blood test. Cheers. M