Two types of reactions: one is fatigue and crippling pain, the other is chills and flu like aches--could both be to gluten? Is one a secondary problem?

[Erg]

So, for me, semi bed bound pain and fatigue for 3-6 days are the usual result of accidental exposure to gluten. I've been gluten free for a long time, but my sensitivity recently changed, and I still sometimes accidentally ingest something that reads "processed on equipment that also processes wheat" ☠️

 

What confuses me is when I get another reaction. The chills and general aches, and generally feel bad, like the flu.. for two days only. these symptoms also CAN also be from gluten..  but the two sets of symptoms only occasionally occur together. So far from my food journal I know that exercising too intensely seems to brings on the flu-ey feelings. (Too much inflammation in my poor system?) I really hope I can heal and be able to be a beast at the gym again but that's beside the point.

 

But I didn't exercise this week and I got flu-ey again.  I DID go to the hair salon (first time in forever), didnt take any precautions about gluten in products  / air (although I do at home) but if trace gluten usually causes me fatigue and joint/all over pain.. why would it sometimes cause flu like symptoms and sometimes cause fatigue and debilitating pain?

 

Okay, I'll state my huge fear here, is that I have Lyme's disease. It's a long shot, maybe, but I'm freaked out about it. 

 

Anybody have a similar experience? I'm food journalling with dedication but I appreciate any ideas to speed up my "aha!" Moment!!! ? Thanks everyone!!

 

PS this forum had been a lifeline for me for years but I'm finally making my first post! ?

[apprehensiveengineer]

If you suspect you have lyme disease you should get tested for it. You don't necessarily need to have the classic "bull's eye" tic bite reaction. I've not had it, but know people who have and it can be quite devastating if left too long before treatment. The symptoms of lyme disease and celiac disease overlap quite a bit, so difficult to tell unless you test. You could of course, have some other random bacterial/viral infection (mono?). So maybe run it by a doctor.

That said "flu-like symptoms" could be related to gluten ingestion. Aching joints, headaches, and lethargy are common. I've never seen chills/sweating as an official symptom, but I do get that personally (especially at night). I think I've seen other people say that on this forum as well.

I noticed that you said you felt worse when exercising/wanted to get back to the gym. I was a collegiate track athlete/still pursue the sport and have found this to be particularly challenging. I think that when you are still symptomatic, the best you can do is to take it day by day, and be conservative.

It took me about 2 years of being gluten-free to be able to train consistently and not feel like I was always holding my self back. Some of this was the learning curve with the diet, but I also think that I was still recovering from the previous years of hard training in a depleted/sick state. Even though I am much better now, there are still random days where I feel terrible. If I have a hard session scheduled, I'll change it or move it back a day or two. I'll probably still exercise, but keep it light and stop if I feel myself breaking down.

[plumbago]

11 hours ago, Erg said:

So, for me, semi bed bound pain and fatigue for 3-6 days are the usual result of accidental exposure to gluten. I've been gluten free for a long time, but my sensitivity recently changed, and I still sometimes accidentally ingest something that reads "processed on equipment that also processes wheat" ☠️

 

What confuses me is when I get another reaction. The chills and general aches, and generally feel bad, like the flu.. for two days only. these symptoms also CAN also be from gluten..  but the two sets of symptoms only occasionally occur together. So far from my food journal I know that exercising too intensely seems to brings on the flu-ey feelings. (Too much inflammation in my poor system?) I really hope I can heal and be able to be a beast at the gym again but that's beside the point.

 

But I didn't exercise this week and I got flu-ey again.  I DID go to the hair salon (first time in forever), didnt take any precautions about gluten in products  / air (although I do at home) but if trace gluten usually causes me fatigue and joint/all over pain.. why would it sometimes cause flu like symptoms and sometimes cause fatigue and debilitating pain?

 

Okay, I'll state my huge fear here, is that I have Lyme's disease. It's a long shot, maybe, but I'm freaked out about it. 

 

Anybody have a similar experience? I'm food journalling with dedication but I appreciate any ideas to speed up my "aha!" Moment!!! ? Thanks everyone!!

 

PS this forum had been a lifeline for me for years but I'm finally making my first post! ?

"The chills and general aches, and generally feel bad, like the flu.. for two days only." Two days is a long time to be feeling bad!

I have only been able to link a flu-like/inflammatory reaction to something I ate that likely had gluten in it a couple of times. But yes, the reaction was a warm feeling like you have when just getting sick, general malaise, some myalgia - usually it was all relieved upon going to the bathroom. What's your temperature during an episode?

I'm not sure I understand this sentence you wrote: "if trace gluten usually causes me fatigue and joint/all over pain.. why would it sometimes cause flu like symptoms and sometimes cause fatigue and debilitating pain?" Are those not all symptoms of the flu? Or are you saying the fatigue and pain are not the usual flu symptoms? In either case, I can't explain it, I'm sorry. Others may be able to. I suspect there may not be a textbook answer as all of our guts are different.

I second the suggestion above to get tested for Lyme if you suspect you might have it. At that time, hopefully they'll run the standard tests including a complete blood count.

Plumbago

[Lakergirl7491]

I thought I had Lyme Disease about three years ago before I was diagnosed with Celiac Disease. I had and still have very similar symptoms as you.   It was a terribly frustrating process. I just wanted to say that Lyme Disease testing is very inaccurate and you need to make sure you find a lab that specializes in it (Igenix is the one I used).   But many doctors do not understand or agree with the older stage (Stage 2) of Lyme Disease and will not diagnose you with it.  My GP at the time was not comfortable using Igenix Labs so I had to find someone else to sign the lab forms.  Finally, I found a Lyme Literate doctor and saw him for 2 years while undergoing a very long-term course of different antibiotics. After two years I really wasn't any better which lead me to find a Functional Medicine Doctor.  My lab worked showed I had Lyme Disease (stage 2) but in thinking back on it, I think I had contracted it 10 years before that and recovered.  I know many research articles say that Lyme Disease can come back for various reasons, but since I didn't recover after 2 years of treatment, I'm not sure that was the problem entirely.  My Functional Medicine doctor doesn't really seem to care if I had it or not. His thoughts are that your body should be able to heal itself after a while and if it doesn't then you need to get to the source of the problems.  I found out that I had sleep apnea, mitochondrial cell dysfunction, Celiac Disease and my hypothyroidism was not controlled at all. I'm still very sick but many things have improved somewhat and my doctor is saying that it may take 3 years to heal.  I wanted to share all of this with you as you start off of this journey.  I'm not sure at all that you don't have Lyme Disease but I wanted to make sure that you kept an open mind about what may be causing your flu-like symptoms. I think the most important thing to find a doctor that handles chronic illnesses and is knowledgeable about all aspects of the body.   I recommend that you seek out the services of a Functional Medicine doctor.  I googled Functional Medicine to find my doctor.  Some Functional Medicine doctors are very expensive but I looked around and found one that is very aware of the expense and tries hard to keep the costs down. Best of luck to you.