Every time I happen into a casual conversation and tell my story about why I'm gluten free, I find out that my story is a common one. It all started with my thyroid. Funny how so many of us have thyroid problems. I think it's worth sharing our stories. You are your best health advocate and when we talk to each other, we might just pick up on an idea that could help us in our own journey.
This Spring, I went for my annual physical with my primary care physician. I love him. He is so smart and personable and always remembers everything about me and my family. I realize he has it on a chart in front of him too, but he truly remembers "our history" and will call us at home to chat about our care. He's great.
During my exam he said I had a goiter. And nodules that he could actually feel.
Yuck! What the heck is a goiter?!
What he was telling me was that my thyroid gland was enlarged and that he could feel that I had nodules on it. He asked if I had trouble swallowing which, I actually had been having trouble but honestly, I didn't think twice about it. I figured it was allergies and sinus related and paid no attention. He said I needed to have it checked.
The next day, I was laying at the hospital in the ultrasound room having my neck scanned. Fun stuff.
My lymph nodes looked clear. And the nodules did not appear to be "abnormal", meaning they didn't think I had thyroid cancer. My doctor called me at home and said, "You have Hashimoto's. It's a thyroid condition. Yours has quit working.". He wanted me start taking Synthroid which is a medication to help regulate your thyroid.
For years, and I mean since high school, I have complained about having a "sensitive stomach". I have carried Immodium with me in my purse for half my life. I never knew when what I ate would send me running to the bathroom with horrible stomach pains and well...you know. Sorry (too much information?)
I was getting headaches 3-4 days a week for years.
I had been telling my doctor that I have always felt like I had ADD. I could not concentrate and focus to save my life. I used to chalk it up to being "creative" or a "twins mom" but the truth is I've spent my whole life with a lot of noise in my head that is very distracting.
I complained that I always felt bloated to the point that I had pain when I bent over right in the middle of my gut. Like a constant cramp. It was also really sensitive and somewhat painful to the touch.
And I had no energy. I was usually good to go until about 2:30pm each day. That was it. I was cooked after that. I needed a nap and my brain would just completely shut down.
So when my doctor told me I had this thyroid issue and to take medication, I asked him, what happened? Why did my thyroid quit working.
He said it was due to my age (I'm *cough* over 40) and that was just what happens to women my age.
Before I would start to take the medication, I googled everything he had told me. And I found medical journal articles and more that seemed to indicate that GLUTEN could exacerbate a thyroid condition. I found a link for celiac disease. And as I read through the symptoms I thought...THIS. IS. ME.
I have other auto-immune issues. Primarily an auto-immune liver problem that isn't harmful but it just makes my liver enzymes appear that I'm in liver failure when in fact, it's just a weird thing my body does (long story - but I was seen at the Cleveland Clinic and it's all just fine). I also have a severe vitamin D deficiency. My doctor said I barely register any Vitamin D at all. And that sensitive stomach. Headaches...everything. They all were symptoms of celiac disease.
I asked my doctor if I quit eating gluten, would that help. He said no. There was no correlation.
But I pressed on. And I asked if I cut gluten out, maybe it would reduce the amount of medication I needed. He said it wouldn't matter but he agreed we could try and experiment and go gluten free for 6 weeks and then retest my thyroid.
I woke up the next day and started to avoid anything with wheat, barley or rye. After 7 days, my daily headaches were gone (gone by day 4). I had more energy and made it past 2:30 without feeling like I would collapse. And my stomach quit hurting.
I figured it was my imagination. I happened to be at my obstetrician's office for my yearly checkup and told her about it. I told her I figured I was imagining it and she said, no way. She believed there could really be a link.
I called my doctor and asked if it was possible, since I had this symptom relief, and I had these symptoms for most of my life, if I could be celiac. His immediate response was no. But he also agreed to run a celiac panel blood test. That would require me to be actively eating gluten. So I started to eat normally for the next 6 days. During that time, every time I ate something with gluten, I broke out in hives, itchy bumps and rashes, and then would get a horrible stomach ache. My headaches came back and my sinuses got very congested.
My blood test came back negative. No celiac.
But in order to test the theory about the absence of gluten having an effect on my thyroid, I went off the gluten after my celiac panel test for 6 weeks. During that time, each time I accidentally ingested anything with wheat, literally, a crumb, I would break out into a rash, run to the bathroom within 30 minutes followed by 3-5 days worth of dibilatating migraine headaches and sinus congestion. My reactions are always fairly immediate. Sometimes it takes an hour. Usually it's within 20-30 minutes. It's pretty miserable. (and as I write this, I'm regretting eating a bun-less hamburger tonight from a fast food place. My stomach is guessing it was on a bun and removed before given to me. Ugh.)
After 6 weeks gluten free and not yet on any thyroid medication, I went and had my thyroid blood test done again. My doctor called me at home. My thyroid. It was in the normal range. He didn't know why but told me not to take any medication and keep doing whatever it was I was doing.
Last month, I had a ton of medical tests and bloodwork done. One of the things they noted was my liver enzymes. My ALT and AST. They have been off the charts high for roughly 10+ years. They are both normal now.
Does that mean gluten is the problem? I don't know for sure. I know that I feel better when I don't eat it. I know that my thyroid, for now, is normal and so are my whacked out liver enzymes. And I know that when I do eat anything with even a trace of wheat in it, I get sick, really fast.
Is it possible I might have celiac? I think the blood test can be false negative. I had gone off gluten and then only ate it in limited doses before having my blood test. I'm hoping to get gene tested next because you have to have one or two specific genes to even have the potential to have celiac. The other test is a biopsy of your gut but you have to be actively eating gluten to have it done. I don't see how I could possibly do that without making myself extremely sick. Maybe I get sick so easily because it is celiac...because of the skin reactions and rashes and the severity of all of my reactions and because I've spent most of my life with "sensitive stomach" issues. It seems like it was the culprit and was killing my thyroid and maybe had something to do with my liver autoimmune issue. But who knows.
That's why I'm gluten free.
In this space, this is where I plan on sharing good foods I find that I like or different meal ideas that are gluten free. It's been quite the learning curve. It helps a lot to share info because eating gluten free can be expensive. I hate to buy something only to find out it tastes terrible.
And truthfully, this process has been depressing. I haven't gotten back to cooking like I used to before. I feel somewhat defeated. And sad that eating isn't that easy anymore. It requires more time and thought. (for instance, I had to let my church know so that I could still take communion each Sunday. Luckily, they offer individually wrapped corn wafers)
It's not like I would go to Subway everyday to get a sandwich. But I miss it. I miss the taste of sweet, just out of the oven, smooshy breads. And I miss Oreos. And pies. Doughnuts. Not like I ate them often. But I miss them. So, when I find good stuff, I'll try to share it here and if you can't eat wheat or gluten either - hopefully, we can encourage each other to eat, drink and be merry in spite of the whole gluten free thing.
If you have a story to share about your own thyroid or gluten issues or a food suggestion - I'd love to hear about it in the comments.