• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Still Have Chronic Fatigue - Please Help
0

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Sleep apnea? Do you exercise?

richard

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Also, have you had a sleep study done?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,452
    • Total Posts
      930,631
  • Member Statistics

    • Total Members
      63,875
    • Most Online
      3,093

    Newest Member
    CJmommy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement.  Hang in there. 
    • Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks 🍻🍞😩
    • I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc. 
    • I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use!  Matt ---   Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI:  Presentation slides from Dr Volta's visit to Coeliac UK  - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children:    NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo  
    • I was just diagnosed in March and I totally feel you. I'm having a hard enough time with determining which lip glosses are safe, let alone all my face products etc. I feel like this 'grey area' is the biggest annoyance with Celiac. So many foods/cosmetics I thought were safe after reading the ingredient list are actually not safe at all! One website says it's safe, one says its not. All these unfamiliar ingredients and even after googling term after term still so many grey areas!! I'm sure in time it gets easier and second nature and you learn by trial and error but holy this constant uncertainty is super annoying haha.
  • Upcoming Events