Feeling better being GF but still not 100%...

[crunchy_mommy]

I've been GF for 3 months now & have noticed a huge improvement in my severe fatigue. I also notice that the few times I (intentionally or inadvertently) consume gluten, I feel kind of 'drugged' about an hour later... the feeling wears off by morning. Weirdly though, I don't notice the same effect when I take the Eucharist at church (so I'm only 99% GF technically), which is a pretty small amount but still, you'd think I would either always notice symptoms or never notice them. Sometimes I wonder if feeling good when GF is all in my head...

I'm also taking a few supplements (i.e. mag, B12, iron, D) that seem to be necessary in maintaining the positive effects of being GF.

But I still feel not quite right. I feel like there's something else going on too... but I have no clue what. I still get bouts of fatigue, and I still have ongoing digestive issues & abdominal pain, as well as lots of headaches and 'wandering pains'... And my energy takes a huge dip around the second week of my cycle until I ovulate.

Last night I had a tiny tiny amount of soy sauce (second time, first time I had a larger amount of soy sauce, no issues afterwards) and was fine but I'm wondering if today's symptoms are related to that small amount of wheat or to getting closer to ovulation or to neither...

I woke up in a lot of pain -- very very tender joints especially my elbows. And I had a headache that didn't go away for an hour or so. Now I'm pretty pain-free but incredibly exhausted -- that same drugged feeling. The morning pain + headache + drugged is very common for me (though in varying combinations).

I don't know if anything I'm saying here is making sense, I'm just trying to put all the pieces together to see if it's possible to ever feel closer to 100%. Before going GF I was at about 15%, and now I'd say I'm at 65%. Maybe I just need to give my body more time to heal? Or be stricter about staying GF? (Aside from communion, I only have minuscule slip-ups, trace amounts, once every week or two). Or maybe there's something else going on? FWIW, I am dairy-free as well, have been for years, & I tried corn-free with no noticeable difference & soy-free I'm not sure about, I seem to tolerate SOME but not too much???

[mamafish9]

Congratulations on finding something that's making a big difference!

I'd definitely work on 100% gluten free. You might even be one of those people who has x-con issues with kitchen pans that used to contain gluten, stuff like that - is there gluten in your house?

[flightgoddess]

You might be an all or nothing type of person. You may have to sacrifice the eucarist. I haven't taken it since going 100% GF, and my preist understood, and just gives me a blessing. It is a hard choice, but even that 1% is hindering your healing. And buy gluten free tamari, tastes just like soy sauce. Or get La Choy brand, it is made with soy and corn instead.

[nicky85]

My husband has rheumatoid arthritis and tried going gluten free, dairy free and both. He only saw improvements for a short time. Cutting out tomatoes, corn and potatoes and doing green smoothies and a 60-80% raw vegan diet is what seemed to make the biggest difference for him. Have you noticed your symptoms happening when you eat other foods? Good luck!

[crunchy_mommy]

It's all so confusing to me. Our house is 90% GF but there are still some remnants (that bottle of soy sauce, and I was starving so I ate what DH had prepared with it even though I knew I shouldn't have) & some bread that DH & DS eat (though they don't double-dip knives in PB, or at least they say they don't). I am soooo worked up over giving up communion, I'm an Extraordinary Eucharistic Minister and it's vital to me, although I could take just the wine and will consider it if I can't find another cause of the continued problems. I am thinking of getting tested for celiac, maybe a genetic test (which I know isn't 100% conclusive but in combination with my symptom improvement, it might be enough for me)... though I feel like it will be harder for me to remain GF if I test negative.

My diet is 100% vegan & has been for years. I do think soy could be a problem (the soy sauce the other night was on tofu!) but sometimes I seem to eat it without problem... maybe I'm having a delayed reaction to it? I don't eat tomatoes or potatoes often enough to suspect them, and I went corn-free when I went GF and that didn't seem to make a difference so I'm back to eating corn. I just started reading a book on celiac though & now I'm really thinking that could be my issue... and from what I'm reading, it takes months to completely heal... ughh it's just really hard being so strict with GF because I keep doubting myself, thinking 'just a little trace amount won't matter' etc.

[mamafish9]

If they use the same toaster, wash dishes in the same dishwasher, use the same cutting boards with their gluten bread, that's enough to cause issues for many people with celiac or gluten intolerance.

I think the only way to know for sure is to go 100% GF for a few months, let yourself heal more, see if you hit true baseline for you. Then you can try a little at communion (with no other factors to complicate things) and see what reaction you get and if the trade-off seems worth it.

For communion, there are GF alternatives (my church just offers rice crackers) - is something like that an option? You many not be the only person in your church that would appreciate a GF choice.

[crunchy_mommy]

Well we are Catholic & there are strict regulations including that the wafers HAVE to contain at least a little gluten, though I hear there are very very low-gluten wafers out there so that is an option to look into. I was having nightmares about this last night.

I will have to talk to DH about what he does with his gluten bread, I don't use the toaster but for sure we wash all our dishes in the same dishwasher. I'm having such a hard time grasping all this, it just doesn't seem like such a trace amount could do much damage but I probably just need to be hit over the head a few times before I believe it. I think the erratic nature of my symptoms throws me off too. How come one day I'm fine eating a communion wafer or something and another day just sitting in Panera Bread for an hour sets me off????

[mamafish9]

Sounds like those very low gluten wafers work for some and not others:

http://www.celiac.com/articles/22314...ity/Page1.html

Yup, trace contamination just doesn't make rational sense some days. And it can be a bucket thing, or related to how many times in a row it happens, or whatever. But it sounds to me like small exposures may be an issue for you, so given your initial post, I'd try being really strict and see how that makes you feel.

[rhesp1212]

Just wanted to add that you can do the genetic test for celiac while being GF, but the other tests you have to be eating gluten for the test to be accurate.

Also, I am catholic too and avoided communion when I was GF too. You can still be a eucharistic minister and not consume the host. You're not saying you don't believe in the eucharist, you are not consuming it for health reasons. I don't think you would be wrong continuing to serve in that way even though you don't consume it. I'm sure there are others in your church that are GF, celiac, etc. and they probably just get a blessing as well. As long as your pastor is okay with giving you a blessing and having you continue to serve as a eucharistic minister I wouldn't it a second thought!!

[crunchy_mommy]

Thank you, I think I'll talk to our pastor about it when I get a chance... It's kind of a spiritually painful thing for me to contemplate giving up communion. I feel like it might be easier if I had conclusive evidence that I *NEED* to avoid it 100% (i.e. a diagnosis)... And I feel it would be easier to be 100% GF if I knew I had celiac otherwise I keep telling myself it's all in my head. But then again, I could just be gluten-sensitive, not celiac... I know you have to eat gluten for all but the genetic test so I'm not sure if it's worth doing a gluten trial to do the tests. Also this affects DS too because it seems like when I'm eating gluten I get severe oversupply and it makes DS sick so I'm reluctant to do that but maybe I can prevent it somehow since I'm finally aware of the issue. I'm kind of terrified to go back on gluten but it seems it would make more sense to do it now since I've only been GF for a couple months & probably would only need a few weeks eating gluten to have relatively conclusive tests... *sigh* This stresses me out so much.

[mamafish9]

For a definitive diagnosis, you usually need to eat gluten for weeks, and then go through a scope. The genetic test won't say if you have celiac, just if you have genes that increase that possibility.

Given that you're largely off gluten now, it seems like you'd have your best information from looking at your health. If you feel at 65% now, how do you feel completely off gluten? If the answer is 90%, then you've likely found your culprit. And then you can try communion, or trace gluten, and see what it does to your health, and decide if the health impact is important enough to stay 100% off gluten or not. For some people, trace contamination is huge, for others, it is not a big deal.

[crunchy_mommy]

I guess the thing is that this is my third time on a GF diet. Even though I feel so much better on it, I keep giving up on it. I know that is *dumb* and makes no sense, but I've lost a lot of faith in myself since having some really negative doctor experiences. I went GF before I got pregnant (and FINALLY conceived after a year of trying, who knows if that was coincidence or what) but I was starving so started eating wheat during my 2nd tri. Then I tried again a few months after DS was born but I was just a post-partum mess still. So I'm trying to figure out how to make myself stick to it & not just decide a couple months down the line that I'm 'all better' or it was 'all in my head'. I am curious to see how I'll feel 110% GF.