Covid-19 has caused auto immunity food reactions

Posted by dkw @dkw, Sep 15, 2023

I want to share my story in hopes that it will help others. I thought that a reaction to covid had caused gluten intolerance. I now know, beyond doubt, that my 18 months of GI misery, dehydration, and laxative dependence has been cause by multiple intolerances to several different food groups. The main one is a huge intolerance to any and all wheat products. This includes oatmeal, which is technically gluten free, but has prolamins that can very closely cause/ mimic gluten reactivity. The version of wheat intolerance I have developed, at the age of 70, does not show up in the celiac blood test profile. It is there for what is called non celiac Gluten intolerance/reactivity. It is written about, known to the medical establishment, poorly understood, and can only be diagnosed by an M.D. through observation of wheat, use, then stopping use for a period, then reuse, all under M.D. observation. HOWEVER, there is one blood test, practiced by some nutritionists, that is controversial, but in my particular situation was totally accurate in diagnosing my wheat intolerance. It is the MRT, Mediator Release Test. This will save you the hell of an on/off observational M.D. review of watching you suffer the affects of a wheat reaction. The MRT had a wheat reaction of my blood as 3.3, on a scale of 0-3.0. Which is basically an off the charts reaction to wheat. My physical reaction is a big auto-immune response. If I eat wheat, my GI system basically becomes dehydrated, constipated, and my foot/ankle joints swell up the size of grapefruits. The MRT brought other suspected intolerances to my attention. There is no other explanation, other than covid has caused a massive auto immune response that is just about 100% food group related. I have been avoiding the trouble foods from the MRT for about 3 weeks, and it has finally working for me. The MRT flagged the following foods, from my blood test as highly reactive-Wheat,almond,avocado, buckwheat,cashew,chard,corn,garlic,Goat's Milk,grapefruit,green bean,Jalapeno.lemon,lima bean.potassium nitrite, potato,spinach,sunflower, sweet potato,vanilla, brewer's yeast and bakers yeast. I have to the extent possible avoided all of these. My only quibble with the test results would be the low reactivity exhibited by other gluten products, barley, rye, spelt, etc. I did try the barley, with disasterous results, but learned the lesson- ALL WHEAT/Gluten for me is totally off limits. So is any food on MY reactive list. Oatmeal is also reactive more so than the test indicated. But I have to say in general, and I realize, the MRT is contoversial, NOT EMBRACED by the medical industry, but I am convinced it does have a seat at the table when trying to diagnose, and manage the GI issues, which are basically, in my personal case, and maybe numerous other peoples, auto respsonses, based on diet,as my hugely swollen ankle joints(now in remission), would indicate. My wife has observed all mof this for the past 18 months and is in total agreement.

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Boy do I appreciate your thorough posting. I am a retired nurse of 36 years in the field and I can tell you that you need to follow your gut when it comes to doing what you think is right regardless of the unconventional tests out there. The conventional doctors are thee most narrow minded brain washed community I ever delt with and having long covid food intolerances myself, refuse to believe that the vaccine or the virus (who knows which) have anything at all to do with the fact that we lived long lives without issues before getting the virus. At 60 years old and having a gut that could tolerate most anything, I find that I even had trouble with ingesting WATER for many months. So I applaud you for following your heart and staying focused on how your body is talking to you and if there is a test out there that could help anyone get answers regardless of the conventional medical community rolling their eyes....DO IT!

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@laja

Boy do I appreciate your thorough posting. I am a retired nurse of 36 years in the field and I can tell you that you need to follow your gut when it comes to doing what you think is right regardless of the unconventional tests out there. The conventional doctors are thee most narrow minded brain washed community I ever delt with and having long covid food intolerances myself, refuse to believe that the vaccine or the virus (who knows which) have anything at all to do with the fact that we lived long lives without issues before getting the virus. At 60 years old and having a gut that could tolerate most anything, I find that I even had trouble with ingesting WATER for many months. So I applaud you for following your heart and staying focused on how your body is talking to you and if there is a test out there that could help anyone get answers regardless of the conventional medical community rolling their eyes....DO IT!

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Thank you Laja. I think a lot of the Medical Industry runs on a well practiced inertia to protect their business model. I am going to cancel a scheduled Oct.16 endoscopy/colonoscopy that is supposed to determine what is "wrong" with me. I have absolutely no doubt what is "wrong" with me, and I do believe "fixing" myself. I went on two separate rounds of heavy tetracycline during my Covid infection era, for 2 episodes of infected cysts. I can't rule out a role possibly involving those antibiotics in triggering an auto response to so many previously easily digestible foods. I was like you, thinking of water as an allergic response. I switched to bottled spring water for my hydration and I must say it hydrates much better. At my worst, a few months ago, at the height of the constipation, I was walking 3 miles/day, drinking 2 cups of prune juice, and ingesting 5 litres of tap water DAILY!! I was literally killing myself, depleting electrolytes to stay alive and go to the bathroom on an at best somewhat regular basis Thanks again for much appreciated reponse to "My story". I sincerely hope that this will help more people get this figured out on an individual dietary basis. It will not be a "cookie cutter" Big Med solution. Personal diets for every individual covid GI long hauler is probably going to be the difference maker. I also sincerely believe, at minimum your drinking water for hydration must be at least filtered public tap, but ideally bottled spring water of some type.

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I have been with Long Covid for close to 3 years. I have or had all the symptom's on the charts. I've carried most of them all this time, others come and go. We all know all about that, moving forward. I was a healthy mid 50's Gal, doing life, with my kids and hubby. I worked a lot. I loved all of my hats! I had a full time professional career in lending, I was Co-Host & Ex. Producer on a music pod cast, I wrote articles for a music magazine, I wrote reviews for record companies and independent artists reviewing their new music releases and live performances. I worked out. I did a lot of stuff. Now, I don't - do any of those things. I try. Anyway, a few months ago I started have these GI issues. My Doc advised to drink more water. My blood work came back that I was dehydrated. Meanwhile I drink a ton of water so that didn't make sense to us. I drank more water - no change. The Doc ordered more blood tests ( I guess? - I really don't remember all the details here). I have the same problem but its going on, and on, this can't be good for my body. It was the same thing , I'm dehydrated??? - So onto get the fancy water with electrolytes and ph balance and prunes. After more testes to make sure everything else was fine, except that I needed FODMAP guidelines way of tweaking it a bit to modify what to adjust and see what can be reintroduced into my diet. I want to regular again, and if this where it starts I will be happy to mark this one off my hit list of top 25. Countdown 24 I am coming for you!!!
Today is a new day full of possibilities

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@whoesonfirst

I have been with Long Covid for close to 3 years. I have or had all the symptom's on the charts. I've carried most of them all this time, others come and go. We all know all about that, moving forward. I was a healthy mid 50's Gal, doing life, with my kids and hubby. I worked a lot. I loved all of my hats! I had a full time professional career in lending, I was Co-Host & Ex. Producer on a music pod cast, I wrote articles for a music magazine, I wrote reviews for record companies and independent artists reviewing their new music releases and live performances. I worked out. I did a lot of stuff. Now, I don't - do any of those things. I try. Anyway, a few months ago I started have these GI issues. My Doc advised to drink more water. My blood work came back that I was dehydrated. Meanwhile I drink a ton of water so that didn't make sense to us. I drank more water - no change. The Doc ordered more blood tests ( I guess? - I really don't remember all the details here). I have the same problem but its going on, and on, this can't be good for my body. It was the same thing , I'm dehydrated??? - So onto get the fancy water with electrolytes and ph balance and prunes. After more testes to make sure everything else was fine, except that I needed FODMAP guidelines way of tweaking it a bit to modify what to adjust and see what can be reintroduced into my diet. I want to regular again, and if this where it starts I will be happy to mark this one off my hit list of top 25. Countdown 24 I am coming for you!!!
Today is a new day full of possibilities

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Have you been tested for food reactions?

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@dkw

Thank you Laja. I think a lot of the Medical Industry runs on a well practiced inertia to protect their business model. I am going to cancel a scheduled Oct.16 endoscopy/colonoscopy that is supposed to determine what is "wrong" with me. I have absolutely no doubt what is "wrong" with me, and I do believe "fixing" myself. I went on two separate rounds of heavy tetracycline during my Covid infection era, for 2 episodes of infected cysts. I can't rule out a role possibly involving those antibiotics in triggering an auto response to so many previously easily digestible foods. I was like you, thinking of water as an allergic response. I switched to bottled spring water for my hydration and I must say it hydrates much better. At my worst, a few months ago, at the height of the constipation, I was walking 3 miles/day, drinking 2 cups of prune juice, and ingesting 5 litres of tap water DAILY!! I was literally killing myself, depleting electrolytes to stay alive and go to the bathroom on an at best somewhat regular basis Thanks again for much appreciated reponse to "My story". I sincerely hope that this will help more people get this figured out on an individual dietary basis. It will not be a "cookie cutter" Big Med solution. Personal diets for every individual covid GI long hauler is probably going to be the difference maker. I also sincerely believe, at minimum your drinking water for hydration must be at least filtered public tap, but ideally bottled spring water of some type.

Jump to this post

You certainly did not stop short of doing anything to help your bowel issues. My Functional med dr told me that ginger root supplements help with GI motility. I have no issues with motility but I do have nausea that comes and goes, so hence the ginger. Being that you are no stranger to water intake, if you do try ginger caps, make sure to drink plenty of water with it because they can cause heartburn if you don't. Believe me I found out the hard way by trying to take them with 1/2 a glass of water rather than the full 8oz glass. I drink filtered water from our fridge and that so far has been going well. It's when I start to experiment with my diet that runs me in to trouble. My nutritionist said I should see what I can tolerate and what I cannot. I also add LIQUID IV packets to my water per my Dr's recommendations so that my water intake does not deplete my cellular stores by diluting cellular electrolytes. You can get the LIQUID IV packets off AMAZON or even at some supermarkets and drug stores.

REPLY
@whoesonfirst

I have been with Long Covid for close to 3 years. I have or had all the symptom's on the charts. I've carried most of them all this time, others come and go. We all know all about that, moving forward. I was a healthy mid 50's Gal, doing life, with my kids and hubby. I worked a lot. I loved all of my hats! I had a full time professional career in lending, I was Co-Host & Ex. Producer on a music pod cast, I wrote articles for a music magazine, I wrote reviews for record companies and independent artists reviewing their new music releases and live performances. I worked out. I did a lot of stuff. Now, I don't - do any of those things. I try. Anyway, a few months ago I started have these GI issues. My Doc advised to drink more water. My blood work came back that I was dehydrated. Meanwhile I drink a ton of water so that didn't make sense to us. I drank more water - no change. The Doc ordered more blood tests ( I guess? - I really don't remember all the details here). I have the same problem but its going on, and on, this can't be good for my body. It was the same thing , I'm dehydrated??? - So onto get the fancy water with electrolytes and ph balance and prunes. After more testes to make sure everything else was fine, except that I needed FODMAP guidelines way of tweaking it a bit to modify what to adjust and see what can be reintroduced into my diet. I want to regular again, and if this where it starts I will be happy to mark this one off my hit list of top 25. Countdown 24 I am coming for you!!!
Today is a new day full of possibilities

Jump to this post

Holy smokes were you a busy lady. I was too (not as busy as you though, lol) but I had many days during the week of running here and there and loved it. Now I am 90% house bound and understand how frustrating letting go of some of the "hats" can be. Good to read that you are taking electrolyte supplements. My Dr recommended LIQUID IV. Does not taste bad at all. i toodid the FODMAP diet and was switched over to a low histamine diet because of the bloating. My FUNCTIONAL MED Dr said that we have 70% of our MAST CELLS in our gut and they produce histamine. If COVID has caused GI issues then our GI system is responding to the food in our bodies as foreign and releasing histamine just like you were stung by a bee. Its interesting to read up on Mast Cell Activation Disorder. More and more literature is coming out on this as a potential issue with long haulers.

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@laja

You certainly did not stop short of doing anything to help your bowel issues. My Functional med dr told me that ginger root supplements help with GI motility. I have no issues with motility but I do have nausea that comes and goes, so hence the ginger. Being that you are no stranger to water intake, if you do try ginger caps, make sure to drink plenty of water with it because they can cause heartburn if you don't. Believe me I found out the hard way by trying to take them with 1/2 a glass of water rather than the full 8oz glass. I drink filtered water from our fridge and that so far has been going well. It's when I start to experiment with my diet that runs me in to trouble. My nutritionist said I should see what I can tolerate and what I cannot. I also add LIQUID IV packets to my water per my Dr's recommendations so that my water intake does not deplete my cellular stores by diluting cellular electrolytes. You can get the LIQUID IV packets off AMAZON or even at some supermarkets and drug stores.

Jump to this post

The MRT blood test gives good guidance on what foods to avoid and what are well tolerated. It can't test for every food on the planet, but mine showed intolerance to corn, wheat, potatoes, garlic,onions, buckwheat,cinnamon,vanilla, sweet potatoes, trout,avocado, lemon,lime, grapefruit, brewers yeast and bakers yeast. I am avoiding all of these and am functioning better than in the past 15 months. I am doing it through a nutritionist who uses the MRT for guidance.

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I started to notice about a few months after having Covid, (I had it 5 times and it wasn't as bad as other people's stories I heard), that I was having bad GI issues when I ate. For background, I am a healthy eater. Breakfast usually included oatmeal with some fruit on top, egg whites, and some Greek yogurt, Lunch was usually leftovers from the night before, again healthy: grilled chicken and quinoa, etc... Dinner was the same- very healthy. It made no sense to me that I started to have these issues with eating. Bloating and inflammation was the worst because it prevented me to eat. I try to take in at least 2400 calories a day. I also work out 3-5 times a week. Without the extra calories, I was fatigued all the time. Other symptoms included very irregular bowel movements, (I noticed that fat wasn't being digested properly, actually showing up in my BM), achy joints, and insomnia. I went to my GP first, she was useless. She prescribed Ambien for the insomnia, but ignored the rest of the symptoms. Next I went to my gastroenterologist. He did an endoscopy, tested for Celiac's, but I tested negative. He did not suggest a Gluten Intolerance test (rolling my eyes at that...). He basically found nothing, but did notice inflammation during the Endoscopy.
It wasn't until my wife suggested that I start to remove a food group from my diet a week at a time and see if the issues persist. Luckily I started with bread/grains first. The improvement was immediate. She suggested that gluten might be an issue. I started a gluten-free diet and I've only had issues when gluten was introduced accidentally. I eventually called my Gastro and he scheduled a gluten test, which did indicate that I was intolerant.
It's hard to think that Covid had nothing to do with this. I also had some symptoms of long covid- some foods that I used to like made me nauseous by their smell, alone. That has since diminshed. But the GI still persists.

REPLY
@amussara

I started to notice about a few months after having Covid, (I had it 5 times and it wasn't as bad as other people's stories I heard), that I was having bad GI issues when I ate. For background, I am a healthy eater. Breakfast usually included oatmeal with some fruit on top, egg whites, and some Greek yogurt, Lunch was usually leftovers from the night before, again healthy: grilled chicken and quinoa, etc... Dinner was the same- very healthy. It made no sense to me that I started to have these issues with eating. Bloating and inflammation was the worst because it prevented me to eat. I try to take in at least 2400 calories a day. I also work out 3-5 times a week. Without the extra calories, I was fatigued all the time. Other symptoms included very irregular bowel movements, (I noticed that fat wasn't being digested properly, actually showing up in my BM), achy joints, and insomnia. I went to my GP first, she was useless. She prescribed Ambien for the insomnia, but ignored the rest of the symptoms. Next I went to my gastroenterologist. He did an endoscopy, tested for Celiac's, but I tested negative. He did not suggest a Gluten Intolerance test (rolling my eyes at that...). He basically found nothing, but did notice inflammation during the Endoscopy.
It wasn't until my wife suggested that I start to remove a food group from my diet a week at a time and see if the issues persist. Luckily I started with bread/grains first. The improvement was immediate. She suggested that gluten might be an issue. I started a gluten-free diet and I've only had issues when gluten was introduced accidentally. I eventually called my Gastro and he scheduled a gluten test, which did indicate that I was intolerant.
It's hard to think that Covid had nothing to do with this. I also had some symptoms of long covid- some foods that I used to like made me nauseous by their smell, alone. That has since diminshed. But the GI still persists.

Jump to this post

I wonder if COVD didn’t cause my NCGS, I had lost unexplained weight and my drs. couldn’t figure out why. After seeing an integrative practice it was determined I was possibly intolerant to gluten, my prior celiac tests were negative. I haven’t eaten gluten for 4 yrs. and have gained back weight but not fat or muscle. (maybe my age 77 yrs.) I eat healthy, no alcohol, exercise. I didn’t know there was a test for gluten sensitivity, my endoscopy which I had recently for a different issue showed no evidence of gluten damage. I would be very interested in a gluten sensitivity test to know if I am truly sensitive to gluten.

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I also developed several food intolerances with Long COVID. I did the elimination diet for several weeks and found cream gave me painful swollen fingers, eye hemorrhage, and swollen eyes, wheat & gluten & gluten free bread made me constipated with raised red rash on face, mild petechiae on legs and arms, eyes swollen, red and dry, joint pain, and a high tight bloated abdomen, sugar gave me swollen eyes, red cheeks, and much more painful joints, corn gave me red cheeks, dry eyes and increased joint pain), and cheese with mold like blue cheese turned by cheeks bright red and hot.

I have not been able to find a doc who treats mast cell activation but I believe that is what I have.

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