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I Have Had An Undiagnosed Ithing Since 2007.

January

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January Newbie
January
Posted

I have been itching so badly since 2007. I have seen many kinds of doctors for this annoyance. I finally saw a Dermatologist and he did blood work on me. His report came back that I had a blood disorder called, "Polycythemia Vera, PV. So I went to an Oncologist....scared to death it was cancer. For two weeks he did blood work and it came back negative of PV. My current doctor I have, prescribed Lyrica for the itching and it helps. Tonight, I am out of that medicine and I am suffering to no avail. It will be a sleepless night. I also have problems with my eyes when it gets this bad and my skin burns. I need help. It sounds like it could be Celiac disease. When I put cold water on my skin, it subsides until my skin dries. I have been dieting since January 23rd and I have cut down on a lot of bad foods. I wonder if it's something I'm still eating. Please someone...help me. My husband passed away in 2013 and I am still dealing with his loss and this affliction too. Back in 2007, Celiac wasn't heard of....that I know of.

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cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you are not feeling well. I do not have DH celiac rash) but there are many here that do. I would suggest reading the DH section of this forum and checking out symptoms and photos that may relate to you.

I am so sorry for the loss of your husband too.

nvsmom Community Regular
nvsmom
Posted

I too am sorry for your loss.

 

I think you might as well get tested for celiac disease.  The skin biopsy is a good idea.  These are the rest of the tests:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial antibodies) raerly positive if tTG IgA is negative
  • total serum IgA - control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - these tests are older and less reliable tests which have been replaced by the DGP tests.
  • endoscopic biopsy - 6+ samples taken
  • dh biopsy - those with dh seem to be seronegative more than the average celiac
cyclinglady Grand Master
cyclinglady
Posted

Keep eating gluten until all testing is complete! That is super important!

LauraTX Rising Star
LauraTX
Posted

I am so sorry for your loss.  We are here to help you out and get you the info you need to get tested properly.  One of my symptoms as an undiagnosed Celiac was neuropathy- horrible tingly itchy sensations that sometimes got painful, mostly in my legs.  I went through all kinds of testing for them to just tell me they don't know.  It was frustrating.  I still get it a little bit, but recently I started on Lyrica for my lupus/fibromyalgia and it has greatly helped with the leg sensations.  Lyrica is not a medicine you want to just stop immediately, if you run out and are on a higher dose that can cause adverse affects, so keep a supply on hand.  If your doctor just started you on it and you are on a low dose, they can increase the dose until a good level of relief is found.  The dosing can actually go pretty high but usually that is not needed. 

 

You saying putting water on for relief also sounds like my deal... I will wake up in the middle of the night, and my feet get dry and itchy, so I put on lotion.  So if you don't already, find a good hydrating lotion and keep all of your skin hydrated.  I use a store brand fragrance free lotion.  Drink lots of water, too.

 

So next step is to get to a GI doctor and get testing done.  Keep eating gluten until you get tested!

 

Some of the symptoms with your eyes and skin sound a little bit like Sjögren’s Disease.  You can inquire about getting tested for that, too... basically it drys out all the moist parts of your body.  It can go along with Celiac disease.  Open Original Shared Link

 

Also Lyrica is kind of pricey, but they do have a copay card that can help a little, if you need it and qualify: Open Original Shared Link

 

Lots of hugs to you, I hope we can help you get an answer.  

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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