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autoimmune and gluten sensitivity frustrations

Tuesday, November 06, 2018

I just had a lot of blood tests done to test for an autoimmune disease. Thyroid autoimmune disease, but I was tested for a couple others as well. Some background: Back in 2006 my gyno. found that I had a goiter. I was pregnant with my youngest son at the time. So, I ignored it and after giving birth, I asked my family doctor about it. She blew me off and said since my thyroid levels were normal, it's fine. (ugh) I didn't know any different so I just said ok, good. Fast forward a few years and the goiter has gotten so large that I cannot even swallow a pill anymore. I had been blown off by my Dr. a few more times. Finally I switched Doctors and they immediately refered me to a surgeon to have it removed. They did an ultrasound of it also and it was a large multi-nodular goiter. My thyroid levels still tested normal. (but they were NOT tested regularly and I felt all kinds of crazy during those years). So, it was removed. My surgeon asked me what caused my thyroid to mess up and I had no answer. He asked me about Hashimotos but that was a foreign term to me and I had no answer. Nobody ever gave me one. After it was removed I felt a ton better though and I still do. BUT, I found out that Graves and Hashimotos are both autoimmune diseases and one or the other has pretty much got to be responsible for my thyroid issues. My thyroid wasn't traumatized physically and I shouldn't have had an iodine deficiency because none of my siblings did, or anyone else in my family. My paternal great grandmother had a large goiter that sounded like mine. But, my Grandma refused to give any information other than "it almost choked her to death". So, ALL of my tests came back normal. No Hashimotos, No graves, no nothing. Which seems like good news but it's freaking frustrating!

I do know that I have gluten sensitivity though. Once I found out Hashimotos and Graves are autoimmune diseases and Gluten is the first thing you need to cut out of your diet, I did. And, OMG I felt so much better. My water retention went away, the puffiness, the brain fog, the fatigue. Then, I ate gluten again and within a half an hour I was congested(which I hadn't even noticed before), itchy(another symptom I wasn't aware was gluten related), and massively TIRED and fatigued. And, could not think clearly. There were some days when I would pick the kids up from school (after having a nice gluten filled lunch) and it took all my concentration to just drive there to get them and back home.

So, at this point I don't know what to do. I still believe that Hashimotos or Graves have to be responsible for my thyroid disease. Maybe I will contact my surgeon and see if the thyroid looked like I had hashimotos when he removed it. I read that you can tell by looking at it. Then, at least I would have an answer! But, in the meantime I am going to remain gluten free. The frustrating thing about this whole thing is that people treat me like I'm a hypocondriac and I'm just going along with a fad. It makes me so mad that I find myself having to justify not eating gluten, to those around me. They get frustrated if I take extra time trying to find a menu item I can eat, when we go out. But, if I had a deathly allergy they would probably be very helpful and HELP me find something to eat safely. Even though I don't die, I bloat, get stomach cramps, congestion, itchiness, brain fog, and feel like I NEED to take a nap. Not super pleasant things. I was hoping for an actual diagnosis so I could say "I have an autoimmune disease" and people would be more respectful of my choice. And, yes, I know that it's really nobodys business what I put into my body and to heck with them. But, ehhh.
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Member Comments About This Blog Post
    398 days ago
  • GINA515
    One thing that works for me is not to mention anything about gluten. I just chose "what I'm in the mood for". That has the added benefit of changing my personal attitude. Instead of avoiding what will make me sick, I choose what makes me healthy.
    399 days ago
  • GINA515
    I understand your frustrations. Part of the problem with conventional medicine is that they can only treat to the numbers. It's a legal liability for them otherwise. You seem to be on the right track. It might be a good idea to look for a naturopath.
    399 days ago
    I think you are handling it well!
    399 days ago
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