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Please Help ,Possible Celiacs?


Vixxy

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Vixxy Newbie

I was diagnosed with Psoriasis on my scalp at 15, also diagnosed at that time with juvenile arthritis and at 17 IBS. I have Selective Iga (no trace of levels) and severe anaemia (I get one IV every months as I cannot tolerate Iron orally), I am also low in Vitamin B12 so am being supplemented. In recent years I have experienced so much muscle weakness and being uncomfortable with my body/joints/muscles that the Drs were sure I had Lupus but the tests came back negative. They know I have not got fibromyalgia but cannot explain my symptoms and can


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passionfruit877 Apprentice

I was diagnosed with Psoriasis on my scalp at 15, also diagnosed at that time with juvenile arthritis and at 17 IBS. I have Selective Iga (no trace of levels) and severe anaemia (I get one IV every months as I cannot tolerate Iron orally), I am also low in Vitamin B12 so am being supplemented. In recent years I have experienced so much muscle weakness and being uncomfortable with my body/joints/muscles that the Drs were sure I had Lupus but the tests came back negative. They know I have not got fibromyalgia but cannot explain my symptoms and can

elye Community Regular

Welcome, Vixxy!

If you haven't already, check the lengthy list on this website of symptoms of gluten trouble - - almost every single complaint you have listed is there. For this reason, I would suggest that you tell your doctor you would like the complete celiac blood panel run:

tTg - IgA or tissue transglutaminiase IgA

AGA - IgG or Antigliadin IgG

AGA - IgA or Antigliadin IGA

Total IGA

(Think I got all the caps correct!) :rolleyes: I have met two celiac people in the last year who had their life-long skin rashes misdiagnosed as psoriasis, when it was really dermatitis herpetiformis - - the skin presentation of gluten intolerance/celiac disease. Another reason I would give you to be tested!

There can be false negatives, even if you are eating gluten when tested. If I were you and I got a negative, I would still try the gluten-free diet for a month at least and see what happens. Nothing to lose!

Good luck! :)

Beccels Rookie

Hi Vixxy,

I am in a slightly similar boat to you ...

Here is me:

Anaemia (although ok now on oral supplements)

Vitamin deficiency B12 (ok now on oral supplements)

Selective Iga (Im not sure about this one but mine measures at 2, normal range being 0 - 20.

Sleep Problems (Its currently 3.30am! Need I say more! ha!)

Muscle Weakness (Sometimes it hard just to walk up the stairs)

Tiredness (I wake up feeling like I haven't slept)

Hairloss (I think I loose a lot of hair when I wash it)

Anxiety/Not Leaving home Much, depression, anger/irritable, cries easily (tick, tick and tick. Add agoraphobia)

Pale Skin (with big dark bags under my eyes)

Constant Feeling of no Energy (always thinking about my bed!)

Hard to Breathe Sometimes (Rearly, but I know what you are talking about)

Then just add migraine variants, and magnesium deficiency.

My Dr has stuck with me for years, and the whole gluten thing is a totally new investigation for us. We found I have one of the genes.

The only advise I can give you, is just stick with it. Just keep on searching and searching until you find a Dr who listens to you.

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    • trents
      @Ben Cohen, make sure you ask your physician to order a test called "Immunoglobulin A (IgA)" (aka, "total IGA"), which tests for IGA deficiency, along with the tTG-IgA. The tTG-IgA is the primary test used these days to check for celiac disease but if you are IGA deficient, the tTG-IgA will not be accurate. Some physicians neglect to check for IGA deficiency, operating on the outdated assumption that it only occurs in young children. Here is an article outlining the various antibody tests that can be ordered to detect celiac disease: Another thing to keep in mind is that, as Dr. Gunn indicated, if the antibody testing is positive, your physician will likely want to confirm those results with a biopsy which would require you to remain on the gluten challenge.
    • Dr. Gunn
      Before putting yourself through the disruption of a gluten challenge, you might want to check and see if you carry the celiac risk genes DQ2 and/or DQ8. If you don't carry the genes your celiac disease risk is below 1%. If you do have the genes, a gluten challenge followed by antibody testing would be the next steps for a proper medical diagnosis. 
    • trents
    • jenniber
      yes, i told my brother that, but he’s fine with never getting an official diagnosis he says! he doesn’t often take my advice LOL
    • Tobo
      I'm 63 and was diagnosed in 2010. Prior to diagnosis I was suspected of having to strokes and medicated according each time. A neurologist called me in to discuss my scan. From that discussion I had a camera down and celiac disease was confirmed. I suffered continued pain and numbness down my left side and was offered amitriptyline, and antidepressants that was also diagnosed for nerve pain. I said no as I didn't want the stigma of being on antidepressants. Seven years later I begged my GP to prescribe them and my life was changed almost immediately. If I'm glutened accidentally whilst eating out then my nerves pain/symptoms get worse but it's nothing compared to taking the medication and feeling a little drowsy every now and then.  The best of luck for the future.
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