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Itching And Prickles

Karla99

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Karla99 Newbie
Karla99
Posted

I was diagnosed last month (biopsy and blood) and have tried to be VERY careful about what I eat and yet I am still having what I call the "prickle-itches". This travels all over my body and drives me crazy (even keeps me awake at night). Is this something anyone else has gone through? What am I doing wrong??????

Thanks for any help you can give me.

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elisabet Contributor
elisabet
Posted
I was diagnosed last month (biopsy and blood) and have tried to be VERY careful about what I eat and yet I am still having what I call the "prickle-itches".  This travels all over my body and drives me crazy (even keeps me awake at night).  Is this something anyone else has gone through? What am I doing wrong??????

Thanks for any help you can give me.

<{POST_SNAPBACK}>

My son had almost the same problem,we eliminated,diary,soy,and gluten,and all these are gone.

good luck

quantumsugar Apprentice
quantumsugar
Posted

Have you looked into DH? Open Original Shared Link Open Original Shared Link "The symptoms of intense burning, stinging and itching cannot be overemphasized" and "may keep patients awake at night".

Or, on the other hand, I get some kind of itchy ezcema/rash when I get any gluten, dairy, or soy--additional allergies should definitely be checked into, and make sure you've eliminated all gluten in everything, down to cosmetics, condiments, etc.

Rachel--24 Collaborator
Rachel--24
Posted

I know exactly what your talking about...I get that too but its not so bad that it keeps me up at night or anything. It sometimes happens after I eat and it happens alot after I've been glutened. There is no rash involved. Its just a weird feeling.

jpsych Newbie
jpsych
Posted

Your not alone. I was diagnosed over a month ago and had the same problem. My doctor prescribed me a prescription antihistimine that worked but made me tired. I don't have any itching problems now. It could be a detoxing response from getting off of gluten...or not.

Hope you feel better.

Karla99 Newbie
Karla99
Posted
  • Author

Thanks for all the responses....I have no rash just the "problem". I see the doctor on Monday so hopefully he'll have a GREAT answer. I can't tell you how much this forum helps me. You are all the greatest!!!!

julie5914 Contributor
julie5914
Posted

I feel like there's little bugs biting me at night. Is that what it feels like? I am taking magnesium b/c I was low on it last doc visit. Hoping it stops cause it makes me spazz out.

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lorka150 Collaborator
lorka150
Posted

Do you mean, like, inside your body?

Rachel--24 Collaborator
Rachel--24
Posted
I feel like there's little bugs biting me at night. Is that what it feels like? I am taking magnesium b/c I was low on it last doc visit. Hoping it stops cause it makes me spazz out.

<{POST_SNAPBACK}>

Yeah...what is that all about? I get that too...or it feels like bugs are crawling on me. :blink:

Karla99 Newbie
Karla99
Posted
  • Author

I also have the "bugs" crawling on me at night but the prickle/itch is kind of like little needles pokeing you but not to the point of hurting sorta like an itch...really hard to explain but drives a person crazy.

Rusla Enthusiast
Rusla
Posted

All of you who have DH did you get it when you were first gluten free also?

I itch so much I have a back scratcher in my bag at work.

Claire Collaborator
Claire
Posted

First off to repeat myself, I do not have celiac disease. I have not yet been tested for non-celiac gluten sensitivity. I have been tested and diagnosed with Type II, Delayed Food Reactions and LGS.

On the reactive foods list is wheat, barley, rye. among many other things.

Before my diagnosis for DFR and LGS I had constant itching (intense - especially at night) accompanied by fierce cold chills. There was no rash. With the diagnosis (which did not specify gluten) I gave up bread and flour laden foods. Within a week the itching and chills went from nearly intolerable to manageable - i.e. flare ups at times but symptom free a lot of the time. As I didn't know the issue to be gluten I made no attemp to go gluten-free. I now am Gluten-free Casein-free - since August.

Because there may be more than one culprit you will be disappointed if you look for gluten to be responsible for all your symptoms. This leads you to expect everything nasty to go away - and immediately. It doesn't work tht way. Food sensitivities is almost a certainty if you have LGS> If you have celiac you are almost certain to have LGS. Any number of other foods could be causing your problem. I have had episodes of chills and itching when I know I had not been exposed to any grains. It had to be one of those other things. Claire

Noelle126 Apprentice
Noelle126
Posted

I also get the bugs crawling itchy feeling..I always thought I was just weird.,...thankfully I am not the only one! :blink:

jerseyangel Proficient
jerseyangel
Posted

I used to feel the "crawlies", too especially the 2 years before going gluten-free. It was mostly in my legs in bed at night. Sometines, they would also affect my left arm, neck and face. They are mostly gone now :)

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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