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Raised total IgA but doc says its not coeliac :( Anyone ever had a raised IgA?

Posted , 3 users are following.

Jayney84
Jayney84

Hi guys

Has anybody ever had a raised IgA before? I have been tested for coeliac disease. However, all my results have come back as normal (IgA tissue transglutaminase has been reported as negative). But my IgA is always out of range (should be between 0.6-4.50 and mine was 4.79 previously. In view of the abnormal result they tested all my immunoglobulins which were all normal but my total IgA was 5.29 (should be 0.6-4.5).

When i google raised IgA it brings up all scary diseases (myeloma etc). My doc ordered more bloods just to investigate further and they have all come back normal (FBC, ESR, CRP, rheumatoid bloods etc). He said becaome my FBC and serum electrophorosis (whatever that is) is normal he can rule out myeloma (cancer).

Just really worried. Could i have a gluten sensitivity which could cause a raised IgA?? Im having sleepless nights about this thinking ive got some sort of cancer that the doc is missing.

my symptoms are: Weight loss (around 8lb in 10 months), increased wind causing occasional bloating, borderline ferritin, dizziness, headaches, hair shedding, tingling pains in calf. Also not sure if this is of any significance but when i go to the toilet now it always floats (never used to). Im 30 years old and female btw and my only other diagnosis is asthma. Could asthma cause raised IgA?

thank you for reading and if anyone could help i would be so grateful x

1 like, 9 replies

9 Replies

  • jodie11659
    jodie11659 Jayney84

    Posted

    I'm in UK and just tested positive for coeliac, my IGA was >250 and should be 10, so I'm 25 times over what they should be, my endomysial antibodies tested positive as well. It's very scary.
    • Jayney84
      Jayney84 jodie11659

      Posted

      my IgA endomysial antibodies were 4.69 (so just slightly raised) but then when i got the total IgA tested it was 5.29. If you endomysial antobides were positive im assuming you have been diagnosed with coeliac disease?
  • Jayney84
    Jayney84

    Posted

    Also should add i have a constant foggy feeling and wake up everyday with a headache but whenever i ask my doctor, he just says ive got health anxiety sad
    • jodie11659
      jodie11659 Jayney84

      Posted

      I've got to have my endoscopy on Saturday, but it looks like I'm very coeliac. These past four weeks have been the worst. I feel like I'm going mad, I feel sick with really bad bloating within an hour of eating gluten, I've got violent headaches and over the past few days the foggy feeling, my muscles also keep going weak and I've got tingling in my hands. My doctors have been rubbish, like you they put things down to anxiety, yes I maybe a little anxious but that's because I feel so ill and my body is giving me symptoms that I've never had. I had to ask to be tested for coeliac and to be revered to a gastroenterologist , I've being going back and forth for years to the doctors with my tummy to be told it's IBS, I have just found out at according to nice guidelines they must test for coeliac before they can diagnose IBS.
    • jodie11659
      jodie11659

      Posted

      I also have had bad thoughts that their is something nasty going on, it's a horrible scary time and you feel alone.
  • aveline
    aveline Jayney84

    Posted

    Hi, Nicola. Press for the endoscopy with biopsies. You'll rule out CD or confirm it plus it will give the drs a better look at what's going on inside. Blood tests aren't perfect. My GP said my CD blood work was normal but sent me to a GI for endoscopy because I have some vitamin deficiencies and my son has CD. While my GI thinks we'll rule it out looking at my blood work, he also said he won't be surprised if he does find CD.  I've been in limbo for weeks - endoscopy in early May.

    Not sure if asthma elevates IgA, but allergies sure do. Could be seasonal/pollen or even undetected food allergies. And food allergies could be contributing to your symptoms as described...it's something you may also want to look into. I know there could be serious issues, but IMO a lower IgA is worse as it points to immunodeficiency. Autoimmune isn't much fun, either so let's hope you're in the middle somewhere!

    I have a circulation disorder (Raynaud's) and often have some tingling here and there, but it was getting worse and my GP found low B12. It could cause hair loss, I believe (my thyroid is fine - that runs in my family tho) and other symptoms you have. It's sure made my foggy head far worse!!  I know because I had a month of injections that have made me feel soooo much better. Not all the way, and I'm taking sublingual drops now, but I totally know how you feel! 

    How do drs. expect anyone's "Health Anxiety" to get better when we don't have answers and are still symptomatic??  

    Jodie - GL to you this weekend!!

     

    • jodie11659
      jodie11659 aveline

      Posted

      Thank you, I just had a call to say they had cancelled my endoscopy on Saturday, I burst into tears and rang them back and said if I can't have it on Saturday then I'm going to have to be hospitalised because I feel so ill, luckily a very sympathetic lady has moved people around and got me in. I don't think people realise how Ill this disease makes you. My symptoms are getting worse by the day. I can't wait to get my life back 😀
    • aveline
      aveline jodie11659

      Posted

      Oh, sweetie - hang in there!  I'm so happy they did keep the appointment after all. Just a few more days...you can do it!  HUGS to you!
    • Jayney84
      Jayney84 aveline

      Posted

      thank you so much your post really helped smile Interestingly i do have allergies (hayfever pollen, dust, pets etc) so maybe it could be that. And i wonder if the dizziness is just anxiety because lately i feel like im so oversensitive to every little feeling in my body its horrible. When i feel a spot of dizziness, i then feel like im sort of on edge all day just waiting for that next feeling of dizziness if that makes sense and it makes it worse. Trying to ignore it and no focus too much on it and seeing if it helps. Going to my doctor on thursday to discuss the IgA but at the moment the plan is to repeat them in 3 months. Hes not concerned but i obviously let my health anxiety get the better of me.
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