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I've been gluten free for over a year now. While I've definitely noticed improvement, I can't seem to sustain it. I'll feel better for a while, and then slip back to feeling super fatigued. I've gone through elimination diets and cut out things that bothered me. Helped for a while, then started to backslide again. Am now pretty much following the whole 30 diet, though I seem to have trouble eating enough to maintain energy that way, so am having to alter it slightly. Even with that, I just can't get to feeling better. I don't have the stomach problems and headaches I did prior to dropping gluten, and am mentally/emotionally in a much better place. But my energy level is awful. I want to get my thyroid checked, especially since my hair continues to fall out, but am wondering if there are other things I should check on as well. My doctor will prescribe whatever tests I ask for-- I just need to know what to ask for.

Any suggestions?

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I suggest:

Thyroid tests: TSH, Thyroid antibodies, Free T3 and Free T4

B-12 levels

Iron (RBC)

hematocrit

ferritin storage levels

FOLATE level

Vitamin D level

These are the ones linked to fatigue, energy and hair loss.

(the Folate anemia is the one that really messed me up)

But others may have more suggestions.

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-Zinc and Magnesium may also be low

Are you taking any vitamins? I got more energy even while eating gluten after taking B12 and iron for a couple of months. I don't know what the '30' diet is. Do you much eat meat?

-If you get short of breath also get them to examine your lungs and heart.

-You may have sleep apnea. Do you snore? Wake up with a sore throat? Does anyone else in your family have it? Has anyone else you've slept around ever noticed weird breathing at night? Hypothyroidism can affect sleep apnea too.

-Should probably get liver enzymes and kidneys checked

-Diabetes can make you tired

-Anything unsual about how often you pee?

-Are your periods usual?

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-Zinc and Magnesium may also be low

Are you taking any vitamins? I got more energy even while eating gluten after taking B12 and iron for a couple of months. I don't know what the '30' diet is. Do you much eat meat?

-If you get short of breath also get them to examine your lungs and heart.

-You may have sleep apnea. Do you snore? Wake up with a sore throat? Does anyone else in your family have it? Has anyone else you've slept around ever noticed weird breathing at night? Hypothyroidism can affect sleep apnea too.

-Should probably get liver enzymes and kidneys checked

-Diabetes can make you tired

-Anything unsual about how often you pee?

-Are your periods usual?

Whole 30 is similar to paleo, so yes on the meat. I don't eat red meat because until last fall I had been vegetarian for about 15 years, and hadn't eaten red meat for years before that. Worried about how my body would react to it, and really don't like meat so far, so can only take on so much. I do think eating more protein has been helpful, but again has made no lasting difference. Pretty sure I don't have sleep apnea, but I do have two small children, so I do get woken up sometimes. Pretty sure that alone doesn't account for all of my fatigue, though. When I've had bloodwork done, my blood sugar has always tested fine, and I have no other reasons to suspect Diabetes. My periods are regular and annoyingly painful.

Thanks for the suggestions. I really appreciate all thoughts. Generally everything comes back completely normal when I get any testing done, so I'm trying to make sure there isn't some less commonly tested thing that I'm missing.

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They always forget to check the Folate level.

I had blood panels done over and over and that was not on it.

The B-12 level was tanked and so, I was supplemented, but I still felt like hell.

It kept me weak, fatigued and dragging for a while after DX.

When I read that it is often affected in celiac, I asked for the

test, and there it was. Very low. I supplemented with prescription strength folic acid for a few months and that bone-tired fatigue stopped.

Vegetarians sometimes are B-12 deficient.

These two anemias could be the problem.

IMHO

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I had to look up Whole 30. I tend to get a little tired completely off starches and I feel better with maybe 1/2 sweet potato, a small serving of white rice, or some sprouted buckwheat crackers daily.

With the hair falling out, I bet it's thyroid.

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Yes, I have had to be careful about that, Skylark. I have totally bottomed out on energy a few times, so I'm trying to be very conscious about carbs. Planning to try adding some rice or other grains back in carefully to see what my reaction is, because I need to have a few other options. I lost weight before figuring out the gluten thing, and I have yet to gain anything back despite noble efforts, so I'm trying to be on the least restrictive diet possible, while still avoiding things that make me sick. My normal range had been 125-135, but I seem to be stuck around 116. The hair loss totally makes me think thyroid (though I think my tests have generally been fine), but wouldn't difficulty gaining weight be a counter-indication? Obviously, I'm going to have them check it, because I don't think anyone ever ran all of the tests for it. I did test mildly hypo as a teen, but it seemed to normalize after a bit.

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I've been gluten free for over a year now. While I've definitely noticed improvement, I can't seem to sustain it. I'll feel better for a while, and then slip back to feeling super fatigued. I've gone through elimination diets and cut out things that bothered me. Helped for a while, then started to backslide again. Am now pretty much following the whole 30 diet, though I seem to have trouble eating enough to maintain energy that way, so am having to alter it slightly. Even with that, I just can't get to feeling better. I don't have the stomach problems and headaches I did prior to dropping gluten, and am mentally/emotionally in a much better place. But my energy level is awful. I want to get my thyroid checked, especially since my hair continues to fall out, but am wondering if there are other things I should check on as well. My doctor will prescribe whatever tests I ask for-- I just need to know what to ask for.

Any suggestions?

I'm not going to ask your age ;) but another thought about hair falling out...you might want to get all your hormone levels checked, female hormones can cause hair loss when they are out of balance. If you are into your 40s, you might be considered perimenomausal and your hormones ARE beginning to shift. Whether at that age or not, Estrogen, estrone, progesterone, FSH/LH, testosterone, DHT all can figure into hair issues.

Are you taking any medications for which hair loss might be a side effect?

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I'm not going to ask your age ;) but another thought about hair falling out...you might want to get all your hormone levels checked, female hormones can cause hair loss when they are out of balance. If you are into your 40s, you might be considered perimenomausal and your hormones ARE beginning to shift. Whether at that age or not, Estrogen, estrone, progesterone, FSH/LH, testosterone, DHT all can figure into hair issues.

Are you taking any medications for which hair loss might be a side effect?

I'll be 35 in a week. Hopefully not perimenopausal yet, but hormones probably worth checking. I'm only taking vitamins/supplements now, including biotin, which is supposed to HELP with this. The only trace of prescription left is the antidepressant I'm weaning from to finish eliminating corn.

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Yes, I have had to be careful about that, Skylark. I have totally bottomed out on energy a few times, so I'm trying to be very conscious about carbs. Planning to try adding some rice or other grains back in carefully to see what my reaction is, because I need to have a few other options. I lost weight before figuring out the gluten thing, and I have yet to gain anything back despite noble efforts, so I'm trying to be on the least restrictive diet possible, while still avoiding things that make me sick. My normal range had been 125-135, but I seem to be stuck around 116. The hair loss totally makes me think thyroid (though I think my tests have generally been fine), but wouldn't difficulty gaining weight be a counter-indication? Obviously, I'm going to have them check it, because I don't think anyone ever ran all of the tests for it. I did test mildly hypo as a teen, but it seemed to normalize after a bit.

Hyperthyroidism can cause weight loss, hair loss, and fatigue. Perhaps you've gone the other direction.

I find that white rice is easier on my system than brown, becasue it is very low in grain lectins. Sweet potato is great because it's not even a nightshade.

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I'll be 35 in a week. Hopefully not perimenopausal yet, but hormones probably worth checking. I'm only taking vitamins/supplements now, including biotin, which is supposed to HELP with this. The only trace of prescription left is the antidepressant I'm weaning from to finish eliminating corn.

you are on the low end, but perimenapause is not out of the question.

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I'm totally confused now. As I expected, everything came back normal. Before I got the results though, I started experimenting with b12, and it made a huge difference. I felt human again, and had energy despite the fact that we were traveling and I should have been exhausted. I figured I must have been on the low end of normal and continued taking it until I got back home. Yesterday I picked up a copy of my results, and it turns out my b12 was actually too high before starting the supplement. 1370 where top of the range is 946. If my levels were too high to begin with, why would taking it have made such a difference for me? Is it possible that my body can't process what's there and was getting something from the sublingual that it can't create from what's already there? (the sublingual was the methyl form where I'm sure the b complex I took until a year or so ago was the cyano-whatever) Or am I just crazy?

My thyroid, btw, seems to be fine. TSH 1.35 (.45-4.5 range), Free T4 1.25 (.82-1.77 range), Free T3 1.88 (1.81-4.06 range). T3 is on the low end of the range, but I don't know what, if anything, that means.

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With a low FT3 it is possible you are not converting your T4 to T3. T3 is the active hormone picked up and used by your cells, T4 is sort of a "storage" form, and the body converts it to T3 as needed. If your FT3 is too low, you can feel hypothyroid even with normal T4 levels.

Are you by chance taking any thyroid medication?

Just went back to re-read original post...guess not!

Edited by beachbirdie

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