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Julia814

Recurrent low grade fever 1 year after going gluten free

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So I was diagnosed with celiac June 2019 and have been gluten free since. Prior to my diagnosis I had intense daily nausea among all the other fun GI symptoms. Right after I was diagnosed I started to get low grade fevers every 2-6 weeks that would last for a night, make me feel like I had the flu, then go away. Despite my blood test results being almost normal now, I still get the fevers. I haven’t noticed any correlation between gluten exposure and when they happen. When Im not having the fevers, I usually experience some mix of nausea, headaches, sore throat (sometimes canker sores), fatigue, dizziness, and hot flashes most days. I’ve also become sensitive to the sun and can’t be in direct sunlight for more than a half hour without feeling the symptoms listed above. 
 

I’ve been getting some other blood tests done to see if there is something else going on, but so far everything has been negative. My doctor tested for lupus, which runs in my family, but that came back negative as well. As you may be able to imagine, it’s a little frustrating to keep being told everything is fine when you feel so unlike yourself. I haven’t been able to hold a job or consistently attend college since I graduated high school (I’m currently 21) due to the nausea and GI symptoms, and I’d really like to start feeling better and get back to life. 

 

my question is, has anyone had a similar experience? I’ve read on other forums that low grade fevers could be related to celiac, but I don’t know for sure. Does anyone else who has low TTG numbers experience any of those symptoms on the daily? Could this be something I will grow out of the longer I am gluten free? 
 

Thank you for reading, I really appreciate your time. Hope everyone is staying safe and healthy during this time!

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What do you mean when you say your blood work is "almost normal"? What is not normal about it?

A number of recent studies have demonstrated that many or most celiacs who believe they are eating gluten free are actually practicing "low gluten" eating because of cross contamination. This is particularly true of those who are still eating out. And gluten contamination can also come from medications and supplements that use wheat starch as a filler.

Have you been tested for vitamin and mineral deficiencies? 

When I read that you have become sensitive to sunlight, the first thing that popped into my mind was lupus. That's a classic symptom of the disease. When I google "What can cause sensitivity to sunlight besides lupus" all that turns up is lupus itself. Though, admittedly, my search was hasty and superficial. I believe that, like many other autoimmune diseases, lupus can be difficult to diagnose. I wouldn't write that one off just yet: https://www.lupus.org/resources/reducing-time-to-diagnosis#:~:text=Lupus is a disease that,to receive an official diagnosis. Fever is another symptom of lupus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5866120/. And it is well-known that people with autoimmune diseases tend to cluster. It is very common for Celiacs to develop other autoimmune diseases.

Because you are experiencing headaches along with nausea, I would also consider that you may be experiencing migraines. 

 

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Julia,

I see this was your first post. Sorry, I neglected to say, "Welcome"!

You should also look at the possibility of having developed allergies to non gluten food items. Last year I experienced several periods of intractable vomiting and diarrhea. I began to look at the patterns of my eating at those times and came to realize I had developed allergies/intolerances to chia, hemp and avocados. Chia was a new addition to my diet at that time but the other two I had historically been able to consume without issue. I also have an issue with saponins (the natural chemical defense chemicals present in seed coats) found in some grains such as quinoa. I can eat them if they are washed and cooked thoroughly but not raw. So, what I am saying is that Celiac disease is part, and maybe part and parcel, of a dysfunctional immune system. 

You would do well to start a food diary and see if there are patterns between what you eat and these episodes of vomiting, fever and headaches.

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