Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Still Have Chronic Fatigue - Please Help


Gfresh404

Recommended Posts

Gfresh404 Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AandGsmomma Apprentice

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

SMDBill Apprentice

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 :)

nvsmom Community Regular

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.

lovegrov Collaborator

Sleep apnea? Do you exercise?

richard

ciamarie Rookie

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.

1desperateladysaved Proficient

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Gfresh404 Enthusiast

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

mommyof4 Apprentice

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!

1desperateladysaved Proficient

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.

Gfresh404 Enthusiast

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.

Gfresh404 Enthusiast

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

shadowicewolf Proficient

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?

AandGsmomma Apprentice

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

Gfresh404 Enthusiast

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.

  • 3 weeks later...
Aly1 Contributor

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.

dilettantesteph Collaborator

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.

pain*in*my*gut Apprentice

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!

tarnalberry Community Regular

Also, have you had a sleep study done?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.