Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help ,Possible Celiacs?


Vixxy

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,373
    • Most Online (within 30 mins)
      7,748

    Alexis Parker
    Newest Member
    Alexis Parker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.