Why Do I Have Symptoms From Activity?

[CaliSparrow]

My health started sputtering 10 years ago. The last eight years, my health really suffered. Every year, there was some health issue to overcome. I went through a lot like many of you here.

I am eight months down the road being gluten-free and many things have improved. Last weekend, I started a sailing class in honor of my dad's birthday and my husband drove me to a friend's house an hour away for a chat on Wednesday (they end up doing all the talking and I can see my friend without being wrung out by the end of it). I see my mom in assisted living a few times during the week and on Sundays. That's pretty much it. The sailing is exhausting me. It's just on Saturday. I don't have any plans with friends this week and am glad about it. I hang on to the words someone here said that their first year gluten-free was harder than their sick years before diagnosis.

I am really struggling with this and am very depressed. I know I haven't been glutened by food in a month now but then, we have exposed drywall in our bathroom and although I use gluten-free shampoo, my other hair products haven't been checked. The fatigue seems to correlate with my activity level but I wonder if I should be more critical about hair gel, etc. It's not like I'm trying to climb Mt. Kilimanjaro. Just a few activities a week and I'm exhausted.

All the times I was sick before, I had more fight in me than I do now. I don't get it.

[AlwaysLearning]

I'd definitely go get my hormone levels checked and get tested for vitamin deficiencies. They are both common in those with celiac and are easy to test for with just a blood draw.

Get the actual numbers of the test results so you can do some of your research into the "normal" ranges. Though your doctor may say everything is okay, just being too far in one direction or the other can still cause symptoms even if the health insurance agencies don't want to pay for treatments. (No, I'm not jaded. lol)

If those are all fine, I'm not sure what I'd try next, but you are in good company here. Fatigue seems to be the most common complaint of those who have been gluten free for a while but still have lingering symptoms.

[CaliSparrow]

I'd definitely go get my hormone levels checked and get tested for vitamin deficiencies. They are both common in those with celiac and are easy to test for with just a blood draw.

Get the actual numbers of the test results so you can do some of your research into the "normal" ranges. Though your doctor may say everything is okay, just being too far in one direction or the other can still cause symptoms even if the health insurance agencies don't want to pay for treatments. (No, I'm not jaded. lol)

If those are all fine, I'm not sure what I'd try next, but you are in good company here. Fatigue seems to be the most common complaint of those who have been gluten free for a while but still have lingering symptoms.

Always Learning - Thank you for that. I had stopped taking my vitamins before having some testing done and then put that off due to being glutened. Your response got me back on track. I submitted the tests and began taking vitamins again which helped.

The tests revealed leaky gut (low sIgA?), adrenal fatigue, high mercury levels, ferritin, Vit D & B6 deficiencies & multiple food intolerances. I'm now on bioidentical hormones and support for all of the above. The doctor also put me on a rotational diet. It's going to take time but believe it's good these things have been identified and am, hopefully(!), on the road to better health.

Rome wasn't built in a day... (Repeat)

Thanks for your help!

[nvsmom]

I tend to have autoimmune flare-ups when I get worn out or stressed. Many of the symptoms are celiac symptoms, some I attribute to my thyroid, and others just feel fluish and yucky. I've been gluten-free for almost a year and a half yet I still get issues even when not glutened...

 

I agree, Rome wasn't built in a day... Or rebuilt in our case.   Hang in there.

[CaliSparrow]

Thanks for the reminder about stress. I am under a lot of stress.

[1desperateladysaved]

Sometimes, I think, that ones body is working so hard on the recovery that it doesn't have much left for other things. 

D

[answerseeker]

Fall is a bad time of year for me with allergies. My immune system is working overtime fighting through nutritional deficiencies and allergies. I'm completely wiped out. maybe allergies?

[CaliSparrow]

I tend to have autoimmune flare-ups when I get worn out or stressed. Many of the symptoms are celiac symptoms, some I attribute to my thyroid, and others just feel fluish and yucky. I've been gluten-free for almost a year and a half yet I still get issues even when not glutened...

Yep. That's what's happening to me now. *ugh!*. Thanks for this NVS.

[nvsmom]

Hang in there.

[FruitEnthusiast]

Sometimes, I think, that ones body is working so hard on the recovery that it doesn't have much left for other things. 

D

 

This is also my theory about why I get so worn out. I like to find comfort in that actually - I'm tired because my body is healing. I find I need LOTS of sleep and when I get too tired I get depressed or anxious. At that point I try to take a nap, sometimes I sleep or other times just being in bed without any TV or music, just being in bed in a quiet dark room for an hour helps too. It's hard sometimes because just like a kid, I would rather do something than take a nap! I never regret getting the rest though. Whenever I feel overwhelmed or down it's generally time for rest. Easy does it has become my motto. If I go out for too long or try to do too much I crash.

[Azenka]

I feel worse when I overdo the exersise, and when I say overdo don't mean pushing myself at the gym. A full day's work of not-hard physical labor will make my peripheral neuropathy worse (biggest indicator of gluten ingestions) and of course make my overall feel like I've got the flu.

Also pretty sure I've been glutened by dry wall compound, but then again I was applying it and got it all over my hands because I didn't wear gloves.

 

If you suspect you're getting glutened, it's time to look into what from.

[GottaSki]

Ummm...

 

For me the dreaded flares have no exact rhyme or reason -- for many years people would tell me that I am doing too much, not processing stress, not eating right (lmao), not getting enough sleep, etc, etc, etc.  Sorry, but that is strikingly similar to the words doctors used to dismiss me for decades.

 

Sometimes a flare is simply a flare -- celiac is an autoimmune disease -- our bodies literally attack themselves for what every reason....this can be triggered by all of the above or encountering a cold bug or for no reason what so ever.

 

The important thing is to acknowledge you simply cannot do something right now and that doesn't mean you won't be able to do it another day -- took me over 40 years to get there

 

edited to clarify:  Celiac is an AI that can be managed very well when completely gluten-free -- but when folks go un-diagnosed for many years, some of the AI mechanisms don't shut down easily...just saying -- it isn't always gluten sneaking in.

[CaliSparrow]

Everyone has made some very good points. Having several viewpoints to consider is quite helpful. We are made up of a set of systems and having sensitivities can make it rather tricky.

I put doctors on a different level than regular folks. They spend many years learning and honing their craft. If you are sick, your lab numbers show multiple deficiencies, you get shingles twice in two months, and you have years of ongoing complaints, it's not because you want attention or that you just need to relax. Not that I don't need to relax, ha, but yeah, I do expect more from someone who makes a career out of deciphering someone's health situation. If a random person tells me to relax, I consider it because it is a stand alone observation and know that it may not be the whole picture, whereas when a doctor says it without explaining the anomalies or offering a way to correct them (especially knowing what severe Vitamin D deficiency can do to the immune system and nervous system), then I believe I've been relegated to the "hysteria" category. There are good doctors out there. Some of the other ones need a tune up. Anyway, hopefully my doctor misadventures are OVER.

As far as the wall dust goes, there could be many things in there to cause symptoms to a sensitive person, and in some cases, it could be wheat paste. I wiped down surfaces and a lot of my itching went away and have had a few other symptoms calm down. Maybe I worked out some nervous energy. Maybe having a clean house lowers stress or maybe I rid the areas of something that was bothering me.

I also took a Himalayan pink salt soak and that helped me a lot. My eyes still have the AI look but I am feeling better and clearer than before, mostly just tired and stiff. I've asked the people around me to ease up on bringing me their stress issues. It's time to acknowledge the myriad of life-altering situations I'm currently in and to build the boundaries required to care for myself. I think that'll go a long way too.

At this juncture, I think stress (physical or mental) plays a role in how my body reacts to things with which it's sensitive. It just stands to reason that if I'm stressed, my body goes into reactive mode and if I try dairy or whatnot while in that state of stress, it's going to be more on guard and ready to fight than if I'd spent a month in Kauai. It's like owning a Ferrari and wishing it had the maintenance of a Toyota. I have to care more about my vehicle. It's not a bad vehicle, it just requires more care and I am going to begin acknowleging the benefits I get from taking care of it properly. Sometimes there will be times when it won't cooperate and I do believe that random flares for no particular reason may occur. You can remind me of this the next time I'm confused and suffering though I will be determined to find the culprit. Sometimes I'll find one. Sometimes I won't.

I am feeling better and am focusing on what is in my control. Working on letting go of what's not...

Thank you for your support everybody.

[FruitEnthusiast]

Well, it's so different for all of us. For some going gluten free solves the problem, and for others, like myself as well, it's more like a puzzle with many pieces. My energy level is still not good either. I am still trying to unravel what the sources of my problem are and then a new one pops up. It's complicated and frustrating. I know how hard it is.

 

I can say that I have improved a great deal over time, sometimes it seems at a snail's pace, but it does happen. I start to feel better in little ways. Sometimes I have to look back and remember where I was before to realize how far I've come. It's true too that it did get worse before it got better.

 

Sometimes at the worst times I have to remind myself that "it's always darkest before the dawn", and that helps me. The dawn comes and the sun does come out again, it always does. Know that you are not alone in your struggle. Many of us are in the same boat here, and I continue to learn so much on this site, time and time again.

 

I can really relate to what you are going through. I have to keep re-framing the way I look at my life right now. I don't have much control over my life and that's hard. Sometimes the hardest part for me is to try and accept that I can't change my situation fast enough to satisfy me. Acceptance is something I work at every single day. I'm not where I want to be yet, but I know that things will continue to change for better because I've already seen it happen