Blood results

[Jennywren7]

Hi all, my dr recently suggested I have a coeliac test because my iron level has been dropping for the past couple of years, I had put this down to fibroids - now being treated as a separate issue - and it is now starting to go up again.

Anyway, long story short I was (am) convinced that I was tested for coeliac at the end of the 90s and it came back no problem. Dr says this doesn't appear on my medical records and wanted to redo it. I eat very little gluten as I have many issues with many foods that strongly disagree with me (wheat, oats, rye, eggs, dairy, soya etc). In the run up to the test I did eat slightly more but nowhere near the recommended amount - I know you're supposed to but I have enough health problems and pain and suffering without making it worse on purpose. (I know some people will strongly disagree with my decision and I am ok with that)

Results are back today. T-Transglutaminse IgA level of 3.67 on a scale of 0.8-2.80, so only slightly over the upper level but I would assume that's because I'm 95% gluten free already, and if I did fully eat gluten it would be a lot higher. I'm assuming that you don't have raised antibodies if you're not coeliac and so at this point I can fairly safely assume its a yes?

I have to say I feel gutted. Probably a very common feeling. I already have such massive restrictions on what I can eat, adding a whole new level of restriction and strictness onto it and getting rid of that last 5% just feels like a mountain I don't want to climb.

I do now wonder whether I dreamed the original test from the 90s and maybe I've been coeliac all these years?? Is it something you always have or can it just suddenly start? I've had CFS for 25 years but generally (after I cut out wheat in 2000) at a fairly stable level, till 2015 when I went into a massive decline that I'm still not back from. I wonder if I've always had it, or maybe it started in 2015 and caused this decline phase.

I feel like I have a lot to get my head around....

[dobido]

I think I had been coeliac for years but I used to drink a lot of lager and put my stomach problems down to that as I was social drinking nearly everyday it wasn,t till I decided to lose abit of weight and cut out bread and lager that it improved so mentioned it to doctor but I did not have it 15yrs earlier so I think it can just come on, at the moment mine is bad again as I have a carer for my other health problem and he prepares food for me and cross contaminants without realizing he,s done it till its to late

[Cooper27]

You'll always have had the gene for coeliac disease, but it can activate at any point in your life - usually triggered by illness or a very stressful event (e.g. death of a loved one). It's possible you were activated in the 90s, but it could have come on at any point since then.

It is possible to have elevated antibodies and not have coeliac disease though. I'm not sure what the false positive rate is, but it's high, which is why they confirm with a gut biopsy.

[Hidden]

Although I completely understand that it's a lot to get your head around, this might be great news for your CFS symptoms. I was permanently exhausted for decades and now (in my 50s) have more energy than I ever have thanks to the CD diagnosis. I don't know much about CFS (so apologies, in a bit of a rush and didn't want to read and run) and how it's diagnosed, but it is possible that a lot of your extreme fatigue could be much worsened by CD and therefore improve hugely once you are completely GF and your gut lining starts to improve and work again? Hoping so. Good luck with it all

[lovejesus7]

First of all sorry you had to go through that again.Seond I tolly understand not wanting to put yourself in pain and going on another diet

I have IBSC and am on 3 different diets

GF,DF,and the low-fod map.