A gut feeling

A concern from my endocrinologist during my appointment at the beginning of the summer sent me on a wild medical goose chase that ultimately sent me to clues from more than 20 years ago, but I think I am finally nearing a resolution.

Earlier this summer, during his VERY thorough exam, the doctor noticed what he believed was a problem with my thyroid. He scheduled an appointment for an ultrasound and ordered more lab work than I think I’ve ever seen in my life.

The ultrasound did not show anything emergent. According to my lab work, my thyroid is normal and I do not have celiac disease. At the same time all of this medical testing was happening, I went to Friends for Life. I only made it to one session (other than my own) because of You Can Do This Project responsibilities, but I heard a lot about the sessions with Dr. Fasano (the celiac expert) where he also talked about allergies and gut issues.

little meThose conversations around the pool eventually inspired the flashback. When I was little, I had what they called “prize fighter eyes.” I was congested all the time and my eyes looked like I had gone a few rounds in the kindergarten boxing ring. After traditional treatments, the doctor told my mom that she could try to exclude wheat from my diet to see if that would help.

I don’t remember much from that time – I know I was younger than 6 – but I do remember a lot of rice cakes. A lot of rice cakes. Eventually, we incorporated wheat and gluten back into my diet. It was significantly more difficult to avoid gluten in the late 1980s than it is now (especially for a extremely picky child).

For the past month I have been gluten free. I feel healthier. Again, I don’t have celiac disease but I think the signs have been there for quite some time that there is some sort of allergic/immune trigger occurring in my body. It will be interesting to hear what the endocrinologist thinks about my decision at my next appointment in a few months.

I am thankful for the people in the diabetes online community who are gluten free who have let me pester them with questions and text them photos of confusing nutritional labels. I am also thankful for all the options out there today that are not rice cakes.


  • Similar to you, I have always had “signs” of something going on. I didn’t have the fighter eyes, but I always had purple circles. When I did go gluten-free, they went away. Granted, I am no where near GF now, but I probably should be. Have you been tested for IgG and IgA responses?
    Good job for making it this long in the gluten-free world!!

  • Sara, I know it’s not easy, but if anyone can do gluten free, it’s probably you. I tried it earlier this year (for a week), and didn’t feel like I was missing out on too much. I’d like to go back to it at some point, just for healthy reasons. Thanks for sharing.

  • There is so much talk about gluten these days, it’s hard to know what is actually true. I myself, do not consider myself knowledgeable about the topic at all! But it sounds like you did your homework and I’m glad that you are seeing positive results. For that reason I’m sure it will be a decision your endo will be pleased with!

  • Congratulations, Sarah, for the attention you pay to your body as well as your memory! It is becoming obvious that there are two distinctions: food sensitivities and food allergies. The doctors don’t tend to check for sensitivities; in fact, there may be no actual test for these. Many are caught simply by symptomology. Congratulations on being aware of your own. And may your life be more comfortable and healthier because of it!

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