• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Gfresh404

Still Have Chronic Fatigue - Please Help

Rate this topic

Recommended Posts

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.

Share this post


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


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 :)

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.

Share this post


Link to post
Share on other sites

Sleep apnea? Do you exercise?

richard

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.

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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

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!

  • Upvote 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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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

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?

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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.

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!

Share this post


Link to post
Share on other sites

Also, have you had a sleep study done?

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
      108,432
    • Total Posts
      941,232
  • Member Statistics

    • Total Members
      66,360
    • Most Online
      3,093

    Newest Member
    Jen1104
    Joined
  • Popular Now

  • Topics

  • Posts

    • Turkey, vacuum pack it, you can use it later for soups, stews, sandwiches, omelettes etc. Will keep for months in the freezer

      Dressing,
      You can use it in various ways my fun thing to do with it is moisten it back up a bit and load it into a waffle maker these can then be frozen or eaten when ever, dressing and sausage flavored waffles are AWESOME.
      Other leftovers can be put in a icecube tray and froze these cubes can be kept in a bag in the freezer, they are perfect for just putting a few in a bowl and zapping in the microwave later for quick meal, I love stir frying them in with eggs.

      Gravy, Gravy can be frozen in icecube trays, and kept in bags, you can then put these over bread, mash, etc and melt them over them later in the microwave or use in a soup like a stock to add flavor.

      Most Desserts can be frozen but around here I have hardly ever had any last the next week.

      Mashed potatoes, again these can be loaded into icecube trays frozen and kept in bags for quick reheat and use meals. Goes great in soups later to thicken them up. Green beans, after thanksgiving....you might want a new flavor thankfully the green beans can be incorporated into another cuisines using spices, in a soup or stir fried Asian style in coconut secret teriyaki sauces.
      Casserole dishes honestly freeze quite well in may cases, I have not had many survive the next week but often you can top them other other cuisine spices or sauces and fry them up in a skillet or reheat in a bowl for something different.  
    • Appreciate the thorough responses.    The stomach issues have been dreadful the past few weeks and brought hurrendous awakenings.the worst I have slept in a long time. I have had a few gluten foods in all honest. Maybe a mcdonalds twice in 2 months. Which isnt ideal. But I dont seem to feel anything afterwards (terrible excuse I know)  My biggest worries were my memory and cognitive behaviour! I was in London Bridge station and forgot where I was heading for 15 minutes. My memory is terrible, as is the concentration. So its a bit of a battle at the minute and I am flunking in my new job. I feel like as you said, neurologically I have deteriorated. Wit and brain function out the window. Considering I was a pretty switched on person. Balance and diziness at points. (all this on a gluten free diet after 4 months triggered me too my mcdonalds binge) ha ha.  I think the memory was the worst.    As you said about the brit medical side being useless. I think you are correct. I understand its the NHS and free etc. But this is just not considered a worry. Ive considered pulling myself into A and E this past few weeks because of the pain and I know this is the only way anyone will give me a thorough look over. I was also sent for a bone scan ( no reasoning as to why) But from research it seems to be for searching the nutrients in the bone?    Neurological side has been really i think what has been the toughest. My job requires an awful lot of high concentration and memory. Which when I fail at, causes stress, and then I am caught in the vicious cycle! Thanks for the help guys. Nice to meet some fellow people who can relate. I just feel like celiacs seem to know more then the doctors, which shows primitive practice in order to solve it. Once again, I would never know the NHS or doctors. I understand free health care is health care. But how low on the list this is, is a worry.    
    • I get vomiting with large amounts of gluten, and motion control loss, followed by either Diarrhea or constipation for a week was back in June 2016 when I decided to eat at a new place, I was on my floor unable to move vomiting so hard there was blood in it.
      NOW trace amounts I have gotten sense then and confirmed via Nima Gluten sensor then following lab testing have show that for me I get constipation, gas, bloat, and nerve issues with fog and peripherally neuropathy. The vomiting was missing from stuff confirmed at 6ppm, but obvious other nerve and fog issues were apparent (I kept dropping stuff and walking into things, mind kept on wondering and having those what was I doing moments, topped with backed up to hell with painful gas)
      Everyone is a little different and symptoms seem to change and evolve with time and type/form of exposure. I used to get a angry Mr, Hyde rage mode, and weeks of constipation and I used to not have the motor loss issues just brain fog and looping thoughts. It changes

      The cause is mostly due to your antibodies going up and your immune system attacking your own body, where it attacks, how, and to what degree greatly varies and after a exposure it can take weeks to wind down off the response and for the antibodies to go down. Just giving a basic idea here.

      Once you get exposed all you can do is treat the symptoms and wait it out, up supplementation of b vitamins, magnesium etc. Take pepto, or Imodium depending on what you have, teas and bone broths and try to eat easy to digest foods for the next week, Mushed up, blended, purreed, stewed/steamed super soft foods.
    • Hi everyone,  Once again I am here looking for your help. I was diagnosed with Celiac less than a year ago. It took quite a while to find out because I didn't experience any particular symptoms after eating gluten. I was always tired, had memory problems and was frequently ill; sometimes I had gastrointestinal issues, but they came and went.  Last night I went out for dinner, to a Thai place I trust(ed). Later, I could hardly sleep, I had horrible nightmares, those where you can hardly tell apart when you are awake or not. I expected to have high fever but nothing!  Today all my body aches, I am very tired and was nauseated all day. A little bit gasy and bloated as well.. Was I glutened?? Did I already clean my body enough that I now start to react in this fashion? If so, why does that happen?  There is also gastroenteritis going around, that would be the alternative explanation. I thought I excaped it. I also didn't vomit or have diahrrea like the rest.  What do you think?
    • With a positive EMA and a positive tTg, that is a slam dunk for Celiac Disease.  If you read about testing results, the odds are 99% that you have it. You also had very high numbers on your testing so that adds to the diagnosis.  At this point, the biopsy, if you have it done, is to check for the amount of damage, and is not needed for a diagnosis. I declined the biopsy as I was very sick at diagnosis.  The doctor who ran my blood panel said there was no doubt I had it due to the high numbers on my blood work.  I have been gluten-free for 12 years and every single doctor I have ever seen since then, who whined about me not having the biopsy, shut up about it once they saw my initial blood work.  The difference in my health since going gluten free was nothing short of amazing. I am sure you will have the same results, once you go gluten free.
  • Upcoming Events