Hellooo again!

Just thought I'd post a quick update on what's going on!

After getting IVIG in July, I saw an gastointestinal immunologist who felt he needed to get me off the ivig for a couple of months (to avoid false positives) and re-test for celiac because of all the malabsorption issues.

So for what has to be the thousandth time now, I got tested for celiac in September. He tested anti-gliadin IgA and IgG that both came back negative and anti-tTG IgA which also came back negative. But, and this is a big but, the IgG anti-tTG test came back highly positive for the first time ever! The normal range in the lab was under 5.99 U/ml and my result was 78.6 U/ml!!! A couple of weeks later the test was re-done and was still positive. So I've stopped eating gluten (with a few set backs along the way involving bread and pasta) and after getting the celiac tests over and done with I re-started the IVIG for the CVID. I did four iv doses in September and October, 25 grams total each month (every two weeks), and because of the pretty severe side-effects the iv version was causing I was switched to sub-q infusions right after my first October IVIG infusion. I am now on Subcuvia 35 grams a month and although my experience with it has not been side-effect free by any measure; it most definitely has fewer and less aggressive side effects than IVIG for me.

On a different note I'm still on 5000 IU D3 a day and am still wildly iron deficient (my last ferritin level was 2 after months of supplementation) but other nutrient/vitamin/mineral levels have started normalising and I'm no longer anemic! To wit my calcium level is on the high end of normal (10.8 with the limit being 11) but hasn't gone off the charts again since July, my b6 and b9 levels are normal, b12 is 340 so it still needs some help but we're getting there (I'm on daily methylcobalamin supplements for that, 1000 μg) and magnesium levels are getting close to normal after months of supplements! Zinc levels are also pretty close to normal now!

My calprotectin levels were also off the charts during the summer, but are within the normal range now. On the other hand a lactulose/mannitol challenge done just a couple of weeks ago was indicative of nutrient malabsorption still there, but I think the GI tract may need a little more time to recover...

Serum potassium and bicarbonate levels are still low, but I'm only mildly neutropenic (3000 WBC) with a normal platelet count (finally!) and CRP within the normal range.

The most recent amino acid analysis (after months of protein shakes!) was very encouraging with only levels of lysine, valine, β-alanine, alanine, cystine, glutamine, glycine, tyrosine, β-Aminoisobutyric Acid, cystathionine, ethanolamine, phosphoethanolamine, ammonia and urea being deficient. I know that may sound like a lot of things are deficient but compared to the first amino acid analysis done in June it's an incredible improvement!

Ooooooof! So that's my news!

Ziggy