How Long Do Waves Of Fatigue Continue?

[hopefulinmybody]

Hi Everyone,

I'm starting to feel concerned and thought I would reach out to this great community for a perspective.

I got my biopsy dx of moderate to severe damage (celiac sprue) 12 weeks ago and have been gluten-free since.

I also went gluten-free for two months after testing positive on my blood tests, and that time I felt pretty good after three weeks and my energy was consistent.

This time (after the five-week gluten challenge and biopsy) I am still not able to exercise and every week or ten days I have about three days where I am exhausted and even typing (like now) feels tiring. I feel so tired I just want to stay on the couch. My muscles ache. I thought this was normal celiac recovery and then I went to a tango lesson today (couldn't cancel at late notice) and explained I was low energy. After hearing me describe my fatigue the teacher asked if I had been tested for lupus--then I freaked out thinking, I don't want to have something else on top of celiac. Flares of fatigue seem to be a chief symptom of lupus.

So my question is, Is this normal during the healing process of celiac to have these "flares of fatigue"? I would say that generally I feel at about 70% of my normal, pre-celiac energy then I have these flare days that are two-three days in a row when I am at 30%. I can still do the basics of daily living but don't want to do much else.

I am going to do a blood test tomorrow to check my IGG/IGA antibodies to determine whether I am still eating gluten and have an appt. set up with my primary care doctor Monday to ask about testing for other things. Is this common (or not uncommon) to feel so tired 2-3 days in a row during recovery?

[domesticactivist]

I wonder if you are still getting cross-contaminated? You mention waves of fatigue which makes me think maybe you are periodically getting glutened. I made a post on how to really go gluten-free. Maybe it'll be helpful in getting you thinking of potential sources of cross-contamination.

[cahill]

Have you had your thyroid tested??

When I had ANA testing done I came back moderately positive but negotiate for lupus. My hashimoto antibodys were thur the roof.(998.75 with a range of <10.10 being normal )

[hopefulinmybody]

Hi! Thanks for these ideas.

As far as cross-contamination goes, it's possible and I hope that I will find out as as a result of the blood test this morning. I am *so* careful already. I can only wonder, is it the cheaper possibly gluten-containing Whole Foods conditioner I bought so I didn't spend $10 on a gluten-free version? Beans and rice from a 99% gluten-free raw foods restaurant? It's hard to imagine. I moved into my own place a month ago so the kitchen was bare but maybe I didn't clean it thoroughly enough? I will take everything out to clean it again.

The Hashimoto idea I will mention to my doctor when I see him Monday. Any other ideas appreciated, I will present him with a list of things to test drawing on the wisdom of the celiac crowd.

[Skylark]

Have you had your thyroid tested??

When I had ANA testing done I came back moderately positive but negotiate for lupus. My hashimoto antibodys were thur the roof.(998.75 with a range of <10.10 being normal )

This. You sound hypothyroid, hopeful. It is extremely common in celiacs. Hypothyroid can cause abnormal response to exercise and fatigue. Are you cold, skin dry, hair dry or even falling out, mind foggy or forgetful? Those are other symptoms.

...and before you posted I thought my 432 Hashi's antibodies was through the roof. Turns out I'm only halfway up the elevator!

[Kim69]

I am really tired too. And have ruled out thyroid problems. I too am thinking of lupus and want to get ANA test done I got it done 1 yr ago which was 1:80 speckled. It wasnt followed up and apparently with lupus it can fluctuate. Will let you know how I go over the next few weeks - I am getting tested for SIBO and candida (for gas and diarrhea). My Coeliac blood tests are normal and so are hormones, iron, zinc but vit d is a tiny bit low but I suspect that it wouldn't cause problems. Am trying to cover many bases!

[maximoo]

have your iron and vit D levels chkd if you already haven't.

[hopefulinmybody]

have your iron and vit D levels chkd if you already haven't.

Thanks for these additional ideas. I am still not sure what is going on . . . Since I posted I have seen my doctor and had some good days and then bad days again for the last four days.

I got my gluten antibody results. My IGG is 1.04 with a standard range being less than .9 and my IGA is 2.04 with a standard range being less than .9. Initially (when I first tested positive before going gluten-free) my IGA antibodies were 6x the normal range. And now they are 2x. And the IGG was initially 2x and is now almost normal. My gastroenterologist said this is an excellent result and that most celiacs do not return to the normal antibody range for whatever reason. I hadn't heard that before. Has anyone else heard this? When I saw the results I thought they indicated I was still getting gluten, but according to him I am doing well.

My primary care doctor said I don't have lupus. Or fibromyalgia or CFS. He says my thyroid is normal but I am looking and seeing that he only tested for TSH in November, and not T3 and T4. I am wondering if drilling down is necessary to understand if I am hypothyroid, as someone suggested. I get the sense that he is annoyed with me and he acts like I am wasting his time. Somehow the ideas is that once Western medicine provided an answer for why I was feeling so bad (celiac) but that doesn't mean it always will. His recommendation was to wait a month and then see how I feel (it has been three months gluten-free now) and then check in. No one really has an explanation for why I feel so tired half the time and my only bottomline steps now are the following:

--reduce the amount I am doing and rest more

--throw out the old mesh wire colander and get a new one (I realized this may be a source of CC)

--get gluten-free conditioner (I lapsed on that one and bought a cheaper kind, but hey, I'll try anything now)

--get a new doctor (I moved and am thinking to get a new one is closer who seems more open to talking this through and figuring out what is going on. . . )

--write down asbolutely everything I consume now in a phone-based journal along with my symptoms

I am hopeful and also quite tired by this--it is hard to be so vigilant and keep working on all of this when the condition is making you tired to begin with. I really want to just feel great. When I went for two months gluten-free in Argentina I actually did feel good consistently and I just want to feel that way again!!!

MUCH MUCH THANKS! This community is quite stellar.

--

[hopefulinmybody]

I decided after writing this post to try once more with my current doctor by writing him an email listing the things I would like to be tested for. I'm going to research this but also thought I would ask if anyone else has any other ideas. I know for starters that although my TSH is good years ago either T3 or T4 was way low, so I will mention this for one. Thanks!

[dilettantesteph]

It's possible that you are a super sensitive celiac. You could try cutting out the processed foods for a couple of weeks to see if that makes a difference. Eat just produce and meat. Skip anything processed, even oil and spices, don't eat in restaurants, and see what happens. If it works, then add things back one per week and see what is causing your reactions.

[Lori2]

I am hopeful and also quite tired by this--it is hard to be so vigilant and keep working on all of this when the condition is making you tired to begin with. I really want to just feel great. When I went for two months gluten-free in Argentina I actually did feel good consistently and I just want to feel that way again!!!

It seems like I have been working on this for months and the progress is slow. However, I have had a few GOOD days--really good--enough to know what it feels like. I WANT MORE and I won't quit until I get it.

[bartfull]

"Waves of fatigue" is exactly how I described it to a friend the other day. She suggested I load up on protein early in the day, and don't eat anything sweet (including fruit and carrots) until after supper. I tried it and it works! It seems every time I would eat something sweet, my sugar would spike, then fall rapidly, leaving me so tired I needed to go lie down. Since she told me that though, I have much more energy. And on top of that, about twenty minutes after I eat something sweet, I can go to bed and get a good night's sleep - no small feat for someone who has suffered from insomnia for years!

[hopefulinmybody]

Interesting. I will look into elimination diets and doing just meet and veggies (or almost only, whatever I can manage). I did feel better when I was eating more broccoli. I also have the intuition that I need red meat and chicken. I relate so much to the others who are dealing with the ups and downs of energy. I asked God today in the kitchen to jut let me feel well again. It's so hard to feel like a broken record in your head thinking about all this. I told God I will take advantage of every opportunity to enjoy life and help others if I can feel consistent normal energy again!