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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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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    • Churley
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