Celiac – The Second Round

Diagnosed with Celiac again. Yes, again. Two years ago I was diagnosed with Celiac disease. I had a negative blood test but my biopsy showed significant damage, so my GI doctor decided that I had Celiac. A year later I was seeing another GI specialist since I seemed to be having issues still and that doctor said that my Celiac result was negative for both blood and biopsy.  I was confused but he said the damage was from microscopic colitis and not from Celiac. He wanted me to use steroids to help with my gut when I would have a flare up from the colitis, however, this is a no go for me because of the Cushing’s disease.  I am really sensitive to steroids and start to get Cushing’s symptoms immediately no matter how small the dose and even if it supposedly is only absorbed in the gut (which is not true for me and my endocrinologist agrees).

Fast forward another year and my blood test for Celiac came back positive, but my biopsy didn’t show enough damage to be diagnosed with Celiac so my GI doctor said, “well, stay away from gluten if it makes you feel better but you don’t have Celiac so you really don’t have to stay away from gluten if you don’t want to.

 My primary care doctor and endocrinologist both had strong opinions against that and have marked in my record that I definitely have Celiac disease.  Their argument being that my GI is so messed up and I’m severely deficient in ferritin, probably because of intestinal damage making it nearly impossible to absorb vitamins.  Also, I did feel much better that year I was gluten free even though I was having other issues, so they said that’s my answer.  So, as of yesterday I finally resolved myself to having celiac disease and can no longer eat gluten.

This is harder than if I had been told without a doubt that I had Celiac, since there is question.  Who wants to give up bread and pasta if they don’t absolutely have to?  However, I have been feeling awful tummy wise for the last two years and it has been getting worse and been affecting my mood, clarity, etc.  A sane, normal person would give up gluten without a diagnosis just to feel better, but I’m special.  My daughter has been pretty mad at me for “goofing” around with not giving up gluten since she has been diagnosed with Celiac and has been gluten free for two years.  She has iron clad will power and once was told she couldn’t have gluten, she never touched it again.  She is 13 years old and much smarter and more mature that me 😊.

I am still on a quest to find out why I have such a hard time losing weight.  I am not convinced that this is the only thing wrong with me.  I am constantly in fear of my tumor coming back and my latest theory is that it is back or in another place and I have cyclical Cushing’s disease and that is why sometimes my results are abnormal and then they retest me and they are normal.  I also have Hashimoto’s disease and having a thyroid problem does not help with weight issues either. 

Lately I have been able to find other people that have had Cushing’s disease online that have been successful at losing weight.  This is so encouraging to me since in the past I only would find people in remission that have remained at least a bit chunky.  Until this week I had never found anyone online that was skinny or fit.  These people that I did find are about 10 – 15 years younger than me and didn’t have Cushing’s as long as me, but I still remain hopeful.

Stay tuned on my journey.  I am determined to get my gut working without pain and bloat.  I can’t wait to be fit and as healthy as possible.  I am going to get toned and tight, even with leftover Cushing’s issues and thyroid issues and I’m excited for my journey to contine.

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