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Still Have Chronic Fatigue - Please Help
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19 posts in this topic

Been gluten-free for almost 4 years - consider myself pretty well educated on celiac disease and NCGS. But I'm close to giving up - I feel like I've tried everything.

I have tried and/or still take:

a food-based multi-vitamin almost every day

digestive enzymes

probiotics

glutamine

sublingual b12

fish oil

a supplement call GI Revive which contains a bunch of awesome things for the gut

They have all helped a lot with the brain fog - but I'm still constantly fatigued and rarely feel like doing anything.

I've been tested for nutritional deficiencies, over/under active thyroid, and mono. I also gave up dairy and soy for about 6 months.

I'm willing to try anything at this point.

If you guys have ANY ideas - I'd appreciate the input.

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In my case it was a B1 deficiancy and screwy thyroid numbers. Have they checkes you for blood sugar issues?

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I don't know the answer to the fatigue part, but I feel your pain. I'm only 2 months in and this past weekend was difficult to get through for fatigue. I had so much I wanted to accomplish, but I prioritized them just to get the most important first before I ran out of steam. It's frustrating, but you can't give up. Have you tried to boost levels of water soluble vitamins since they are difficult to over supplement? Vitamin B complex only lasts hours in the body (18 or fewer I think). There are some heavy B vitamins that have all the B's in them in large doses at places like GNC, Vitamin Shoppe, etc. And if it's at all muscular, it may not hurt to try magnesium or potassium (at low levels since you can over-do them). D3 is another you can't really over-do with something like 5,000 IU. But I've read that D3 absorption is improved with K, but that's a fat soluble and probably not good to supplement unless medically necessary.

Supplements are tough and may not even be the answer, but there is little risk to trying within the water soluble ones. Worst case you're just wasting money and your urine will be more yellow :)

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My fatigue is from the hypothyroidism, and since it's so common, I'll ask about that. :) What thyroid tests did you have? If it was just TSH, I'd check again unless it was about a 1. My doctor just used TSH for years when I would ask for my thyroid to be checked. I was uneducated about thyroid health at the time and accepted that as a good test... Boy was I wrong! LOL My TSH was mostly normal but a "tad" high for the last 15 years of my hypo symptoms. I am confident that if they had checked my free T4's, Free T3's, and TPO Ab's I would have been diagnosed much earlier and my 20's and 30's would have been much healthier.

If the doctor didn't run the above tests, I would request them.

I would look into the other AI disorders too. Most of them cause fatigue. Make a list of all your symptoms and check out Dr Google... it's how I have figured out most of my health problems... and then I go to the doctor for confirmation and treatment. LOL

Best wishes.

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Sleep apnea? Do you exercise?

richard

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I've discovered I also have to avoid sulfites (and msg), and one of the things some of the items on the sulfite 'avoid' list do to me is make me very tired, along with brain fog. I'm basically not taking any supplements except liquid iodine drops that only have purified water as another ingredient. I sometimes take a magnesium supplement, and I have a couple of multivitamins to test again sometime soon.

However, the supplement ingredients I avoid are: gelatin capsule and maltodextrin or any starches. They may be gluten-free, but they make me tired. So my suggestion would be to ditch all supplements for a few days to a week, then test them 1 at a time, about 2 days apart to note any reactions.

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Be sure to get good fats as these give energy. Check for other food intolerances. Absorb your food! I hope you will feel better soon. I am 7 months grain free (I can recommend it) and just found out I have many other food intolerances and probably haven't been absorbing well either.

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In my case it was a B1 deficiancy and screwy thyroid numbers. Have they checkes you for blood sugar issues?

Eating doesn't seem to affect this kind of fatigue and all my Vitamins levels were normal when they were checked. I am assuming B1 was one of those. I also did have my Insulin levels checked and they were right on the border of the low side.

I don't know the answer to the fatigue part, but I feel your pain. I'm only 2 months in and this past weekend was difficult to get through for fatigue. I had so much I wanted to accomplish, but I prioritized them just to get the most important first before I ran out of steam. It's frustrating, but you can't give up. Have you tried to boost levels of water soluble vitamins since they are difficult to over supplement? Vitamin B complex only lasts hours in the body (18 or fewer I think). There are some heavy B vitamins that have all the B's in them in large doses at places like GNC, Vitamin Shoppe, etc. And if it's at all muscular, it may not hurt to try magnesium or potassium (at low levels since you can over-do them). D3 is another you can't really over-do with something like 5,000 IU. But I've read that D3 absorption is improved with K, but that's a fat soluble and probably not good to supplement unless medically necessary.

Supplements are tough and may not even be the answer, but there is little risk to trying within the water soluble ones. Worst case you're just wasting money and your urine will be more yellow :)

I try to take a B-Vitamin complex when I can but they all seem to upset my stomach. I am thinking that it's a combination of the B-Vitamins and the my Digestive Enzymes that aren't mixing well.

My fatigue is from the hypothyroidism, and since it's so common, I'll ask about that. :) What thyroid tests did you have? If it was just TSH, I'd check again unless it was about a 1. My doctor just used TSH for years when I would ask for my thyroid to be checked. I was uneducated about thyroid health at the time and accepted that as a good test... Boy was I wrong! LOL My TSH was mostly normal but a "tad" high for the last 15 years of my hypo symptoms. I am confident that if they had checked my free T4's, Free T3's, and TPO Ab's I would have been diagnosed much earlier and my 20's and 30's would have been much healthier.

If the doctor didn't run the above tests, I would request them.

I would look into the other AI disorders too. Most of them cause fatigue. Make a list of all your symptoms and check out Dr Google... it's how I have figured out most of my health problems... and then I go to the doctor for confirmation and treatment. LOL

Best wishes.

I'm pretty sure I had my TSH, T4, and, Free T3 levels all looked at and they were all normal. I'll see if I can find the test results but I am pretty sure I had ruled Thyroid issues. Someone else previously mentioned you have to make sure you look at other things besides just TSH

Sleep apnea? Do you exercise?

richard

Fairly certain I don't have sleep apnea. And I don't go to the gym and exercise but I do ride my bike probably a couple miles a day (to and from class).

I've discovered I also have to avoid sulfites (and msg), and one of the things some of the items on the sulfite 'avoid' list do to me is make me very tired, along with brain fog. I'm basically not taking any supplements except liquid iodine drops that only have purified water as another ingredient. I sometimes take a magnesium supplement, and I have a couple of multivitamins to test again sometime soon.

However, the supplement ingredients I avoid are: gelatin capsule and maltodextrin or any starches. They may be gluten-free, but they make me tired. So my suggestion would be to ditch all supplements for a few days to a week, then test them 1 at a time, about 2 days apart to note any reactions.

I've tried going off ALL supplements for a couple of days but I just felt worse.

Be sure to get good fats as these give energy. Check for other food intolerances. Absorb your food! I hope you will feel better soon. I am 7 months grain free (I can recommend it) and just found out I have many other food intolerances and probably haven't been absorbing well either.

Just had a stool analysis done and results said I was absorbing food a lot better than I thought I was - so I don't think that's an issue. The grain-free thing might be something to consider.

At this point I believe all signs point to some kind of Yeast/Fungi overgrowth. But who knows

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I know this journey can be frustrating & exhausting!

One other thought...have you ever tried juicing? It's just one more idea...you can read about the benefits of juicing online. I bought a juicer about a month and half ago...I also have had ongoing issues...I am a year post-diagnosis. I read an article from a gentleman with Celiac that started juicing & it really helped him...so, I thought I would give it a try. I feel like my energy has increased some, but it is really too early to tell. I juice about 28 ounces a day of carrots, cucumber, celery, apple, spinach, beets...or whatever else I want to throw in.

Just a thought...hang in there!

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Eating doesn't seem to affect this kind of fatigue and all my Vitamins levels were normal when they were checked. I am assuming B1 was one of those. I also did have my Insulin levels checked and they were right on the border of the low side.

I try to take a B-Vitamin complex when I can but they all seem to upset my stomach. I am thinking that it's a combination of the B-Vitamins and the my Digestive Enzymes that aren't mixing well.

I'm pretty sure I had my TSH, T4, and, Free T3 levels all looked at and they were all normal. I'll see if I can find the test results but I am pretty sure I had ruled Thyroid issues. Someone else previously mentioned you have to make sure you look at other things besides just TSH

Fairly certain I don't have sleep apnea. And I don't go to the gym and exercise but I do ride my bike probably a couple miles a day (to and from class).

I've tried going off ALL supplements for a couple of days but I just felt worse.

Just had a stool analysis done and results said I was absorbing food a lot better than I thought I was - so I don't think that's an issue. The grain-free thing might be something to consider.

At this point I believe all signs point to some kind of Yeast/Fungi overgrowth. But who knows

Maybe you could consider wether you may have had too much of some nutrients. It just happened to me.

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Maybe you could consider wether you may have had too much of some nutrients. It just happened to me.

Appreciate the input but I'm not taking any large doses of fat soluble (or any vitamins for that matter) vitamins. Even my multi only has about %100 of the daily for everything.

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I know this journey can be frustrating & exhausting!

One other thought...have you ever tried juicing? It's just one more idea...you can read about the benefits of juicing online. I bought a juicer about a month and half ago...I also have had ongoing issues...I am a year post-diagnosis. I read an article from a gentleman with Celiac that started juicing & it really helped him...so, I thought I would give it a try. I feel like my energy has increased some, but it is really too early to tell. I juice about 28 ounces a day of carrots, cucumber, celery, apple, spinach, beets...or whatever else I want to throw in.

Just a thought...hang in there!

Yeah I might have to try that - my mom just started juicing a ton recently and she's been pushing that on me

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I delt with this for a long time, and now its finaly nearly gone. I found i wasn't exercising enough. Now i live on my uni's campus and its about a 25 minute walk to there from the apartments. I can walk a mile in about 15 minutes or so. So i estimate somewhere between 1-3 miles in total. This is up and down hill too.

How many hours are you getting at night?

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Do you drink Cafinene? I found that I actually had more energy once I cut it out.

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I delt with this for a long time, and now its finaly nearly gone. I found i wasn't exercising enough. Now i live on my uni's campus and its about a 25 minute walk to there from the apartments. I can walk a mile in about 15 minutes or so. So i estimate somewhere between 1-3 miles in total. This is up and down hill too.

How many hours are you getting at night?

I wish mine was like yours but I seem to of plateaued in terms of energy about a year ago.

At least 7 a night - if it's any less I nap during the day since I am only taking two classes.

Do you drink Cafinene? I found that I actually had more energy once I cut it out.

I do not - the only caffeine I consume is from dark chocolate and that's really not that often.

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What about other food intolerances? Have you tried an elimination diet? I found that corn was a huge culprit and that I felt as bad eating that as I did gluten... Perhaps there is something else in your diet that's causing your fatigue.

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You may be super sensitive. You could try a diet of only fruits, veggies, and meat for a week to see what happens.

As stated above, it could be an additional food intolerance in which case it helps to keep a food/symptom journal. Only add one new thing per week so that you can tell what is causing your problems.

Four years is a long time to wait to get better. I hope that you can find a way.

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Been gluten-free for almost 4 years - consider myself pretty well educated on celiac disease and NCGS. But I'm close to giving up - I feel like I've tried everything.

I have tried and/or still take:

a food-based multi-vitamin almost every day

digestive enzymes

probiotics

glutamine

sublingual b12

fish oil

a supplement call GI Revive which contains a bunch of awesome things for the gut

They have all helped a lot with the brain fog - but I'm still constantly fatigued and rarely feel like doing anything.

I've been tested for nutritional deficiencies, over/under active thyroid, and mono. I also gave up dairy and soy for about 6 months.

I'm willing to try anything at this point.

If you guys have ANY ideas - I'd appreciate the input.

I see you are a male.....have they tested your testosterone levels? If that is low, it can cause fatigue. Just a thought!

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Also, have you had a sleep study done?

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    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

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    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
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