Long COVID and gluten sensitivity

Posted by ansimp231 @ansimp231, Aug 13, 2022

So we got COVID twice within just about 5 months. The first time was bad. The second we were mostly asymptomatic. Since the second infection my 8 year old has gotten terrible stomach cramps every time she ate. Finally got her pulled off gluten, and since then only a few issues, and they were with heavy lactose foods, which we went ahead and cut as well. All fine since then.
Has anyone else had the same issue? Are you still going through it? Have your symptoms lessened at all? We're still waiting to see GI, the waiting time is so long. And her Dr has been helping as much as she can, but we just don't know what to expect anymore. This has been going on since January 22 for reference on time.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

I felt that I had Covid in the spring of 2020, tho my symptoms were mostly extreme tiredness, muscle weakness and no ability to eat much. In the months after that I too developed a gluten sensitivity. It took me a while to realize what was causing the bloating, gas, sudden bowel movements etc. When I stopped eating gluten, the problem disappeared. I have tried twice since then to go back to eating bread at least once a day, but can't. They problem comes back. I am 79 and have had lactose intolerance since my forties. Now I feel fine but can't seem to gain weight.

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I’ve had long covid since July 2022. I’ve had chronic widespread pain and chronic constipation since then (among other symptoms). I’ve recently found that completely overhauling my diet has made a huge difference in lowering my pain. Prior to getting covid I could eat anything I wanted, not anymore. I’ve cut out all gluten, dairy (except goat cheese), sugar (which is the toughest one because it’s added to nearly everything), caffeine, and alcohol, and I’ve upped my protein intake, and I have been mostly pain free for almost 2 months now.

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That’s more or less what I have done too. I have divertulosis and ibs and had covid twice. After the first bout a few weeks later I got severe stomach problems and anxiety panic attacks. I got better then got covid again and it all came back again. I lost about 8kgs. I am getting better again but taking time. I have to be careful what I eat and eat much less now

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I am now 68. Got COVID March 2020. Other than the fever and exhaustion I had several weeks of taste/smell issues and brain fog. Over the next year I developed a severe Gluten Intolerance issue. Feb 2021 I had temperature regulation issues and the vascular workup was Raynaud's. Then in March 2021 it progressed to Gluten Neuropathy with severe leg pain, weakness and instability. All lab tests including IgG, IgM and IgE were normal. My doctor though I was just getting old, but I had been fine a year before. A nutritionist suggested stopping all Gluten for a month. Within two weeks the pain was gone but it took 3 months to get the stability and strength back. Along with this I also have histamine intolerance. Any food with high histamines causes face flushing, anxiety, itching, some hives and temperature regulation issues. Now at two years post COVID, I feel really good as long as I maintain a gluten free and low histamine lifestyle, which means I eat what we would call in the cat rescue business "A limited ingredient diet". Organic dried beans, soaked and pressure cooked, are a daily staple, no cheese, no red meat, no dairy (oat milk instead). Lots of organic blueberries and broccoli. My doctors kept pushing hydration but that wasn't it. I drink 2-2 1/2 liters of water a day. Always have.

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Anyone else have bad symptoms from celiac and covid together? In mid-March I was on a 7-day 350 mile bike tour (I average 120 miles/week biking and am 69 yo). I got glutened at the "gluten free" group dinner on day 5. We found out 2 days later that a fellow cyclist has covid, and a number of us caught it. Symptoms were mild for most, but not for me. I've been negative for a month but still can't bike or walk without a pounding heart. Fatigue is mostly gone, but not the left chest pain. I went to the ER 3 weeks ago due to 190/89 BP, and EKGs were abnormal but troponin was baseline (no heart damage). Four years ago I was told I have a beautiful heart, rather disheartening that it seems to be under attack now.

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@kayabbott

Anyone else have bad symptoms from celiac and covid together? In mid-March I was on a 7-day 350 mile bike tour (I average 120 miles/week biking and am 69 yo). I got glutened at the "gluten free" group dinner on day 5. We found out 2 days later that a fellow cyclist has covid, and a number of us caught it. Symptoms were mild for most, but not for me. I've been negative for a month but still can't bike or walk without a pounding heart. Fatigue is mostly gone, but not the left chest pain. I went to the ER 3 weeks ago due to 190/89 BP, and EKGs were abnormal but troponin was baseline (no heart damage). Four years ago I was told I have a beautiful heart, rather disheartening that it seems to be under attack now.

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My worst gluten attack took 8 months to resolve, but I eventually went to a naturopath who suggested 'live' prebiotic, not the regular bottled kind. These are kept in a fridge, and some pharmacists sell them. These settled my guts so quickly, and I returned to normal.
You seem to have the problem of symptoms overlapping, different problems with some of the same symptoms and unfortunately happening at the same time.
I hope you are continuing to follow-up on these heart / blood pressure issues and get a full understanding of "what is happening to me".
Best wishes to you, my friend!

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@kayabbott

Anyone else have bad symptoms from celiac and covid together? In mid-March I was on a 7-day 350 mile bike tour (I average 120 miles/week biking and am 69 yo). I got glutened at the "gluten free" group dinner on day 5. We found out 2 days later that a fellow cyclist has covid, and a number of us caught it. Symptoms were mild for most, but not for me. I've been negative for a month but still can't bike or walk without a pounding heart. Fatigue is mostly gone, but not the left chest pain. I went to the ER 3 weeks ago due to 190/89 BP, and EKGs were abnormal but troponin was baseline (no heart damage). Four years ago I was told I have a beautiful heart, rather disheartening that it seems to be under attack now.

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@kayabbott, welcome. I hope you saw the helpful post from @thisoldewe. Like you, @elias93 also lives with celiac and caught COVID.

I moved your question about gluten and COVID to this existing discussion so you can more easily connect with others experiencing similar issues:
- Long COVID and gluten sensitivity https://connect.mayoclinic.org/discussion/long-covid-and-gluten-sensitivity/

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@thisoldewe

My worst gluten attack took 8 months to resolve, but I eventually went to a naturopath who suggested 'live' prebiotic, not the regular bottled kind. These are kept in a fridge, and some pharmacists sell them. These settled my guts so quickly, and I returned to normal.
You seem to have the problem of symptoms overlapping, different problems with some of the same symptoms and unfortunately happening at the same time.
I hope you are continuing to follow-up on these heart / blood pressure issues and get a full understanding of "what is happening to me".
Best wishes to you, my friend!

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Thanks for your reply. My gluten symptoms were mostly resolved in a week I suspect that the cytokine storm caused by glutening while getting covid was a double whammy. I've make kombucha for many years (probiotic) and it is also great for GF sourdough starter. Kombucha is very easy to make (tea, water, and sugar) and a SCOBY (symbiotic culture of bacteria and yeast). Those of us with screwed up GI tracts have to keep our gut bacteria happy. It is likely that covid caused some inflammation of my heart muscle, which hopefully will go away but not as quickly as I would like.

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Thanks for the tips... sound good.
All the best for your recovery!

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@colleenyoung

Welcome, @ansimp231. You must be so worried about your young daughter. @jlsn1016 and @smtoia have also mentioned gluten sensitivity and going gluten and dairy free.

Dr. Van, post COVID specialist, Mayo Clinic wrote this blog post and GI issues and COVID:
– A Gut Feeling: Long COVID and GI symptoms https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/a-gut-feeling-long-covid-and-gi-symptoms/

Wait times are long everywhere for every specialty. I hope she gets to see a GI specialist soon!

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I hope all of her symptoms resolve along with the Covid recovery. In the meantime, cutting lactose and gluten out is the way to go.
When you get to the specialist, then you will get confirmation of what it is.
If you are in Canada, the Celiac Association is a great resource.
All the best.

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