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Please Help - Glutening

GFreeMO

By GFreeMO
in Coping with Celiac Disease

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GFreeMO Proficient
GFreeMO
Posted

I had been doing so well but unfortunately, something got me.  I am going through the GI stuff, joint pain, etc.  What lingers is the DH and low grade fevers.  I will run one for several weeks after a glutening.  Does anyone else get this and is it because of inflammation or just from having an autoimmune disease?  I have a friend with lupus and one with MS and they both run these fevers.  I asked my gastro and he didn't know.  He just told me to take Tylenol.  Go eat gluten free and take Tylenol.....Boy, do I wish it were that easy!!

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josh052980 Enthusiast
josh052980
Posted

How long have you been gluten-free?? In the early days I'd get a slight fever if I got glutened, but it seems to have stopped. I've been gluten free for a little over 2 years now. I found taking an Advil and a hot shower seemed to knock it back for me. I still get the joint pain part, but the low grade fever thing seems to have stopped a while ago.

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GFreeMO Proficient
GFreeMO
  • Author
Posted

Thanks Josh,  I've only been at this since January.  I was previously gluten free for about a year and a half and then a doc convinced me that it was all IBS.  I ate gluten for a few months all along thinking it was only IBS.  Went to another doc and had high liver enzymes which led me to the gastro and the official diagnosis.  - I guess I just have a lot of healing to do. The fevers just really wipe me out.

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josh052980 Enthusiast
josh052980
Posted

It hits us all different. Just keep at it and don't get discouraged; you're gonna get glutened here and there. You just have to find what gets your through it. For me it's what I told you, with some rest and relaxation thrown in and caffeine to give me the energy to get through it. If you need support, we're all here for you!

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kareng Grand Master
kareng
Posted

Oh MO!  What did you get into, Young Lady!  :wacko:

 

I have no wisdom, just want to say "I hope you feel better soon!"

 

Open Original Shared Link

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gatita Enthusiast
gatita
Posted

Awww, so sorry you have to go through this.....

 

I got glutened recently again too, it's no freaking fun!!! I had the fevers last fall but they seem to have gone after nine months gluten-free. I hope. So hopefully yours will subside soon. Gotta love the 'just take a Tylenol' advice. My GI's is 'just take an Immodium'!

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Ciel121 Apprentice
Ciel121
Posted

   Wow, I thought I was the only one who got the low grade fever. I've been gluten-free for 4 years, but for me it depends on how much gluten I ingest. I once went to a "gluten-free" restaurant--clearly that was a lie. I got the most excruciating pain. The migraine was so bad I wanted to go to the emergency room, pain was unbearable, of course bloating and nausea and the fever. I'm so scared to eat anything now because I know I'll be in so much pain. Sorry to hear that you're going through that. But I'm so amazed that being glutened can cause a fever. I wonder why. How is that connected with Lupus or MS? Hmmm...I have an appointment at the Celiac Center at Columbia University in June. I will be sure to ask these questions and will post when I know.

  Stay safe. Double check ingredients and cross-contamination. :-D

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cavernio Enthusiast
cavernio
Posted

So I've been avoiding grain oils for fear of cc, and I've not been eating chips.  (Actually, not doign great after eating chips is part of the reason I'm doing this.) I found chips that are cooked in avocado oil. Of course I bought them! Afterall, even if they're not labelled gluten-free, they only have salt, potatoes, and avocado, all foods I eat quite a lot of.

Bah, of course I got sleepy and cold. I practically burned myself having a hot shower so long I made myself get out before the water started to get cold...it clicked for me that I had screwed up somehow, could easily be gluten cc on the chips as they also make flavoured ones, or maybe I just don't do well with deep fried things, some by-product of it or something.

 

Anyways, the long, near-scalding showers I go hand-in-hand with the flu-like feeling. Makes sense to me though. When you have a flu or bad cold, your immune system is also acting up. And I know there's been research showing that, for colds at least, the people who seem to have the most symptoms also show a more active immune system for the duration. So the idea is that it's not actually the virus that's making you feel so awful, but your immune system trying to get rid of it.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I have had a fever now and then when "something" was going on.

I've even noticed I get a fever from allergy attacks (before I figure out its allergies, not a flu, during allergy season).

I take a Tylenol, it helps. I eat and drink whatever sounds good (gluten-free, of course).

I also get DH outbreaks when I have a true virus. Ironically, that's how I figure out if it was a virus or allergies. Sad, but true.

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Juanitahoy Rookie
Juanitahoy
Posted

Although I have not monitored it, I also get really cold when I am glutened. I also have an autoimmune condition (or two...). I have fibromyalgia and have been suffering from autoimmune hives since early December. Interesting... Next time I am unfortunate enough to be glutened I will take my temp.

I hope you feel better soon. So tired of "just take a Tylenol" type reactions. With my doc it's "take as much pepto and gas x as you need". Too bad I can't pour it over the DH I get on my face!! Ugh!

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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      Joint swelling when ill even on gluten-free diet

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      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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