I'm guessing
@Athene* that during the development of celiac disease prior to going gluten free, when the antibodies for celiac were high, that they cross-reacted with other tissues, attacking your thyroid and adrenals and possibly BBB. Then when gluten free for long enough to lower antibodies, the effects on other parts of the body didn't reverse but neither will antibodies necessarily be left high in your system.
Thanks again
@snowman! I don't know, but I never did have high antibodies for coeliac (they were 'very low' according to doc, but I guess an antibody is an antibody...). They weren't present when I became ill, or anytime during the next 15yrs. This coeliac result/diagnosis was found about 15 years after first becoming ill (i.e. with thyroid and ovary results swinging from high to low: FSH, TSH, oestrogen, Free t4). I was hoping at the time it was autoimmune (just to get a firm diagnosis).
So, when this fluctuating ovary and thyroid function happened, every antibody under the sun was checked for, because I was keen to become pregnant, and I was keen to get answers. No antibodies were found, including coeliac, and many many others including (thankfully) neural antibodies. So then they claimed it wasn't autoimmune, and washed their hands off me, but a young endocrinologist did suggested a possible hypothalamic issue. He left the country and never went any further with me and I forgot all about that.
Then later, with more aches and pains and fatigue etc, and no benefit whatsoever from any form of thyroid treatment, a different endocrinologist kindly suggested b12 injections might help; and even though he said strictly speaking there shouldn't be a need for them, he wrote 'pernicious anaemia' on a letter to the GP (my doctor, general practitioner). His diagnosis was based on low serum b12, and symptoms, but no evidence on testing of parietal cell etc antibodies, or other antibodies. Maybe, like you say, they weren't high enough. Who knows?
As luck would have it, the letter to the GP got lost. I only found it on my file with his other notes years later.
After it went missing, things went rapidly downhill.
Eventually, no endocrinologist would get involved, saying 'not my area' etc. and just told me to take the Levothyroxine and go away. They said my b12 serum was 'very high' (which mystified me, given the earlier low b12 finding, by that endocrinologist as well as a separate b12 test by a gynaecologist), and said I didn't need injections at all, and would certainly not prescribe them.
Thankfully, my GP is fairly relaxed and open, and agreed to test MMA, (and Active B12 tested privately), showing it was low at cellular level, so she gave me scripts for b12, which did help with many symptoms, but not all. So I added some sublingual b12 plus small amount of methylfolate, after reading it could help. It helped more than b12 only, but again, not enough.
So on to 'Phoenix Rising' and now I'm at this point where for the first time in my life, since the last few weeks i.e. since I began the high-dose methylcobalamin and high-dose methylfolate, I'm tapering off the hydrocortisone (was on it for about 18months, at 15-20mg daily for the majority of that time). I'm sticking to a small dose of NDT with my t3-only dose and things have improved greatly from t3-only. It seems I really needed that bit of t4. Thanks for suggesting the small dose of t4, by the way (I seem to remember it was you). I'm absolutely thrilled. It helped to get rid of some awful IBS symptoms that needed tons of folate to get rid of (now I need less folate).
I don't expect to get my thyroid function back (I expect the tissue has atrophied from so many years of Levothyroxine? I'm not sure. I never had a thyroid scan, only an adrenal one, but I don't mind taking the thyroid meds as long as my health continues to be this good).
I might need to take some iron though (doc is re-testing) - my transferrin saturation % was slightly low last time and my ferritin, which is what led me to post on that earlier thread. Could this indicate a need for b2, do you think, or just the dreaded iron supplements (have had them before)? Am I right in saying b2 can raise iron (or storage iron?)
