Fatigue and possibly celiac disease

[sae0693]

Hi,

I suffered for depressive symptoms, anxiety, fatigue, ptosis, bloating and other symptoms for ten years now. It started with around 16 years old, I’m 26 now. 
 

A few weeks ago I tried removing gluten from my diet and a lot of things got better. I don’t feel bloated anymore, my anxiety is a lot better and I feel way less depressed. Even my ptosis (drooping eyelid) is better. As soon as I eat gluten, all of my symptoms and even the drooping eyelid is back until I quit gluten for a few days. 
 

I did not get testet for celiac disease and I really don’t want to go back on gluten to get tested. I believe that I have celiac disease or my body just doesn’t tolerate gluten. 
 

What didn’t go away is the fatigue. I hate it. I need like 10 to 12 hours sleep to feel somewhat rested. I’m already taking a multivitamin as well as vitamin b. My thyroid is fine. 
 

Do you have any suggestions how to improve my fatigue?

[trents]

Vitamin b? Which one? I would recommend a high potency B-complex. Are you taking a separate D3 supplement? If not, you should be. try 5000IU daily. A magnesium supplement would be wise as well. Make sure all your vitamins, meds and supplements are gluten free.

Have you been checked for anemia?

[sae0693]

2 minutes ago, trents said:

Vitamin b? Which one? I would recommend a high potency B-complex. Are you taking a separate D3 supplement? If not, you should be. try 5000IU daily. A magnesium supplement would be wise as well. Make sure all your vitamins, meds and supplements are gluten free.

Have you been checked for anemia?

I take a vitamin b complex. Currently this one: https://www.amazon.de/dp/B07H7SWFWS/ref=cm_sw_r_cp_api_i_JHDG4R7AVR5YJGK0VVT4?_encoding=UTF8&psc=1

As well as 5000 IU vitamin d3, 600mg Magnesium and some random, cheap multivitamin. 
 

I haven’t been checked for anemia recently. I have been a few times in the last 10 years though and iron was a bit low but it’s in my multivitamin. 

[trents]

I would get checked for anemia again. You may not be assimilating B12 well due to lack of "intrinsic factor and this is necessary, in turn, for assimilating iron well . Look up "pernicious anemia".

[Scott Adams]

If your symptoms are gluten-related, which it sounds like you've already determined, then it is possible you have celiac disease. If so, healing will take time, and you need to be sure your diet is 100% gluten-free:

 

[marcel g]

10 hours ago, Scott Adams said:

If your symptoms are gluten-related, which it sounds like you've already determined, then it is possible you have celiac disease. If so, healing will take time, and you need to be sure your diet is 100% gluten-free:

 

Hi, I have a very similar question to the OP. I've been struggling with a fatigue issue for a couple of years, (and maybe even before that)

How long does it take for the fatigue to go away after stopping gluten?

Context:

My fatigue and other symptoms were pretty bad in 2020, and I had diarrhea, weight loss, brain fog, anxiety, dizziness and fatigue (severe at times) among other symptoms. None of the standard tests turned up anything, and I gradually recovered into 2021. I thought I had ME/CFS, but I've never had the intense muscle pain and orthostatic intolerance that most cases of that have. Then in January, I had another fatigue crash that hasn't really let up since. A new symptom that popped up recently is a tingling sensation over my body, especially in my legs and hands. And involuntary muscle twitching, mostly in my calves.

I've started another round of blood tests with my doctor, which so far have turned up nothing abnormal. B12 and blood count numbers are normal. No parasites or E. coli either. 

Then I realized a few days ago that an oat cereal I've been eating regularly and a granola snack I started eating around New Year's both have wheat ingredients in them. I also realized that the oat meal I was eating when I was recovering was all gluten free, but since about a year ago it hasn't been.

I stopped eating the oatmeal and the cereal a few days ago, and feel quite a bit better. The fatigue isn't 100% gone though.

[Wheatwacked]

 

5 hours ago, marcel g said:

I've started another round of blood tests with my doctor, which so far have turned up nothing abnormal.

Vitamin D plasma and homocysteine tests would be helpful. The 30 ng/ml for vitamin D is just a cruel joke and higher than normal homocysteine might indicate insufficient Choline.

Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study
 

Quote

 

"Results: Ten patients out of twelve showed complete regression of fatigue, while the remaining two patients showed nearly complete regression of fatigue compared to the chronic fatigue syndrome scale scores before therapy.

Conclusions: The absence of blood thiamine deficiency and the efficacy of high-dose thiamine in our patients suggest that fatigue is the manifestation of a thiamine deficiency, likely due to a dysfunction of the active transport of thiamine inside the cells, or due to structural enzymatic abnormalities. The administration of large quantities of thiamine increases the concentration in the blood to levels in which the passive transport restores the normal glucose metabolism in all cells and leads to a complete regression of fatigue."

 

 

18 hours ago, sae0693 said:

my anxiety is a lot better and I feel way less depressed.

Try doubling the vitamin D to 10,000 IU a day for a while. It made a big difference for me.

Vitamin D and Depression: Where is all the Sunshine?

[marcel g]

17 hours ago, Wheatwacked said:

 

Vitamin D plasma and homocysteine tests would be helpful. The 30 ng/ml for vitamin D is just a cruel joke and higher than normal homocysteine might indicate insufficient Choline.

Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study
 

 

Try doubling the vitamin D to 10,000 IU a day for a while. It made a big difference for me.

Vitamin D and Depression: Where is all the Sunshine?

Thanks @Wheatwacked - they checked my Hydroxy Vitamin D about 20 months ago during the first period when my symptoms really showed up. It was at 79 nmol/L, where sufficiency is listed at 75-250 nmol/L. (this was in Canada) I have been taking an extra D3 tablet regularly the whole time, on top of what's in the multi-vitamin, but I suppose it could've dropped for some reason recently during my recent worsening of symptoms that started in January. (fatigue, tingling and numbness and muscle twitching)

I was checked for B12 last week and it was fine, is it possible to be deficient in some B vitamins but not B12? Is it worth it to do a homocysteine test?

I'm still waiting on my gluten antibody test, which will take another 3 weeks to come back, since I'm currently in Indonesia and the test is done in the US. So I don't know if I'm celiac, or non-celiac gluten senstive, or I have a bad case of leaky gut. For a long time I thought I had some form of ME/CFS, but now I'm thinking that my symptoms align better with celiac disease.

I've recently added an extra B complex vitamin to get more thiamine, and will consider adding more vitamin D.

[Wheatwacked]

79 nmole/L is equal to 32 ng/ml. The best benefits seem to be around 200 nmole/L (80 ng/ml). Because greater than 75 nmole/L (29 ng/ml) is deemed sufficient to prevent Rickets and osteomalacia and the committee that sets the RDA maintain that there is not enough evidence that vitamin D has any other function, you will be told you are good to go. You are not. There are two ways of measuring the same thing, nmole/L and ng/ml, choice depending on the lab doing the test. Because the ranges overlap in number, combined with brain fog, it is easy to get confused. There is lots of fearmongering of hypervitaminosis, yet hypervitaminosis D is rare. Vitamin D Is Not as Toxic as Was Once Thought

Vitamin D: convert nmole/L to ng/ml

[trents]

4 hours ago, marcel g said:

Thanks @Wheatwacked - they checked my Hydroxy Vitamin D about 20 months ago during the first period when my symptoms really showed up. It was at 79 nmol/L, where sufficiency is listed at 75-250 nmol/L. (this was in Canada) I have been taking an extra D3 tablet regularly the whole time, on top of what's in the multi-vitamin, but I suppose it could've dropped for some reason recently during my recent worsening of symptoms that started in January. (fatigue, tingling and numbness and muscle twitching)

I was checked for B12 last week and it was fine, is it possible to be deficient in some B vitamins but not B12? Is it worth it to do a homocysteine test?

I'm still waiting on my gluten antibody test, which will take another 3 weeks to come back, since I'm currently in Indonesia and the test is done in the US. So I don't know if I'm celiac, or non-celiac gluten senstive, or I have a bad case of leaky gut. For a long time I thought I had some form of ME/CFS, but now I'm thinking that my symptoms align better with celiac disease.

I've recently added an extra B complex vitamin to get more thiamine, and will consider adding more vitamin D.

It is seldom the case where you have deficiency in just one B vitamin. The exception to that might be something like pernicious anemia. Folate supplementation can mask B12 deficiency.

[Wheatwacked]

This is my interpretation. Homocysteine is considered an independent indicator of vascular inflammation ie., cardiovascular disease. The nutrients most involved in its metabolism are B6, B12, Folate and Choline, all susceptible to malabsorption syndrome caused by Celiac Disease and 

5 hours ago, trents said:

It is seldom the case where you have deficiency in just one B vitamin.

Low folate, B6 and B12 have been addressed in the US population by fortification in wheat flour (which you do not get on a gluten free diet). Choline is ignored. A homocysteine blood test will give you a baseline as to how well that system is working.

I come from a family with hyperlipidemia. Two grandfathers had heart attacks, maternal grandfather dropped dead at 39 years old; my father survived a massive attack, father and mother survived 20 years on combined pacemaker/defibrillator. Maternal grandmother was laid up in a nursing home (seven years) paralyzed on one side by a stroke; older brother had a combination surgery: triple bypass and one lung removed for lung cancer. So, when my current doctor did a homocysteine test last September, we were surprised to see I am in the normal range. I get folate from small red beans, chickpeas and pinto beans several times a week, B6 and B12 guaranteed by supplements and choline by 3 or 4 eggs a day (when I am not being anorexic) and phosphatidyl choline supplement. I just had fasting labs taken today so I'll know next week how that's going.  BP meds were ineffective and caused bad side effects, Amlodipine dried my eyes and woke me up every two hours to pee which was disturbing because on GFD my prostate hypertrophy, diagnosed at 21 years old, had finally resolved. Lisinopril's persistent cough gave me an inguinal hernia. Eating the DV of potassium (4700 mg/day) after two years has brought my BP down. Some BP meds can cause hyperkalemia, but other than that there is no RDA upper limit to potassium from food, while potassium deficiency is a worldwide concern.

 

[knitty kitty]

@marcel g

Your Vitamin B12 test may have shown up normal because B12 is in your multivitamin or your recently added B Complex.

Blood tests are not accurate measurement of vitamins within the cells where they are used.  Blood tests can reflect vitamins consumed from vitamin supplements or the diet in the previous twenty-four to forty-eight hours.  B12 deficiency can occur before there's any changes in the blood.

Keep us posted on your results.

[marcel g]

On 4/22/2022 at 5:15 AM, knitty kitty said:

@marcel g

Your Vitamin B12 test may have shown up normal because B12 is in your multivitamin or your recently added B Complex.

Blood tests are not accurate measurement of vitamins within the cells where they are used.  Blood tests can reflect vitamins consumed from vitamin supplements or the diet in the previous twenty-four to forty-eight hours.  B12 deficiency can occur before there's any changes in the blood.

Keep us posted on your results.

Thanks @knitty kitty - That makes sense. I checked my multivitamin (Centrum 50+, which I started around December) and it has 4000% DRV of B12, but only ~120% of the other B vitamins. The second one I only started a few days ago, only after I took the test, and it also has 100mcg of B12, but it has ~300% of DRV of the others, so maybe this second one will help more.

I've also restarted taking an omega supplement with borage oil, and n-acetyl glucosamine. Along with the L-glutamine and probiotics hopefully my gut will start to heal up.

I feel like the fatigue and brain fog aren't quite as bad anymore since cutting out the inadvertent gluten, although that could still be a placebo effect. The tingling and muscle twitching is still going though.

Yesterday I went to the driving range, which was the first significant exercise I've done in 3.5 months. I've been too fatigued and too worried about triggering a CFS PEM event to do anything except occasional short walks. I actually feel ok today, besides normal muscle soreness. I'm feeling more and more that my issues have to do with my intestine and not ME/CFS, or MS, and probably go back a lot farther than the first severe fatigue episodes in 2020.

I guess it would be nice to get a diagnosis of celiac or leaky gut, so I could finally stop wondering about those other illnesses.

 

cheers,

marcel

[marcel g]

On 4/22/2022 at 4:21 AM, Wheatwacked said:

This is my interpretation. Homocysteine is considered an independent indicator of vascular inflammation ie., cardiovascular disease. The nutrients most involved in its metabolism are B6, B12, Folate and Choline, all susceptible to malabsorption syndrome caused by Celiac Disease and 

Low folate, B6 and B12 have been addressed in the US population by fortification in wheat flour (which you do not get on a gluten free diet). Choline is ignored. A homocysteine blood test will give you a baseline as to how well that system is working.

I come from a family with hyperlipidemia. Two grandfathers had heart attacks, maternal grandfather dropped dead at 39 years old; my father survived a massive attack, father and mother survived 20 years on combined pacemaker/defibrillator. Maternal grandmother was laid up in a nursing home (seven years) paralyzed on one side by a stroke; older brother had a combination surgery: triple bypass and one lung removed for lung cancer. So, when my current doctor did a homocysteine test last September, we were surprised to see I am in the normal range. I get folate from small red beans, chickpeas and pinto beans several times a week, B6 and B12 guaranteed by supplements and choline by 3 or 4 eggs a day (when I am not being anorexic) and phosphatidyl choline supplement. I just had fasting labs taken today so I'll know next week how that's going.  BP meds were ineffective and caused bad side effects, Amlodipine dried my eyes and woke me up every two hours to pee which was disturbing because on GFD my prostate hypertrophy, diagnosed at 21 years old, had finally resolved. Lisinopril's persistent cough gave me an inguinal hernia. Eating the DV of potassium (4700 mg/day) after two years has brought my BP down. Some BP meds can cause hyperkalemia, but other than that there is no RDA upper limit to potassium from food, while potassium deficiency is a worldwide concern.

 

Thanks @Wheatwacked, do you think would it be worth it to stop taking my B supplements for a few days and then retake the B12 and homocysteine tests? Would my vitamin levels drop to my baseline in a few days, making the results more accurate to my situation? Or are the B vitamins stored for longer than that?

[marcel g]

On 4/22/2022 at 5:15 AM, knitty kitty said:

@marcel g

Your Vitamin B12 test may have shown up normal because B12 is in your multivitamin or your recently added B Complex.

Blood tests are not accurate measurement of vitamins within the cells where they are used.  Blood tests can reflect vitamins consumed from vitamin supplements or the diet in the previous twenty-four to forty-eight hours.  B12 deficiency can occur before there's any changes in the blood.

Keep us posted on your results.

Oh yeah, I'll keep you posted. I might start another thread since I have a bunch more questions.

My original quesiton here was how long does it take for someone in their 50s for their intestine to heal after stopping gluten, and for the fatigue and tingling/ peripheral neuropathy to go away?

[trents]

marcel g, leaky gut syndrome is inevitably found with celiac disease. If you have celiac disease you will have leaky gut.

[Wheatwacked]

4 hours ago, marcel g said:

do you think would it be worth it to stop taking my B supplements for a few days and then retake

I waffle on that very question. On the one hand I want to know what my levels are with the supplement and don't care what they are without if they are good with because I take them to make up for what I don't eat enough of.  On the other the B's store about a week's worth so to be accurate as to what I get from diet alone I would have to stop for 10 days and 10 days without them I start to feel the lack.  So, for my fasting blood labs Thursday I treated them as food and did not take them the day before.  Results due next week. I spoke with my brother yesterday and he is going to see what his homocysteine is. He has foot neuropathy and says Tart Cherry Juice is helping. Tart Cherry Juice has a ton more vitamin A and beta-carotene and polyphenols than do Strawberries.  I found this study that kind of supports what he feels.  Effects of Tart Cherry Juice on Biomarkers of Inflammation and Oxidative Stress in Older Adults. He is on blood pressure and cholesterol drugs, I am not.

[trents]

I believe you need to be off supplements for three weeks before getting vitamin levels checked.

[RedFacedJock]

The weakness you're experiencing may be a mild form of Anaemia. It's not uncommon for Celiac's to have an Iron deficiency due to the leaky gut caused by Gluten consumption. Iron plays a vital role in the quality of red blood cells in the body for carrying oxygen to the organs. Most multi-vitamins only offer a fraction of the RDA of Iron in them. So it may be worth getting a stand alone Iron Supplement. Or better yet, get more seafood, leafy greens and dried fruit in your diet. Salmon, Spinach, Raisins... etc are all Iron rich and may help to lift the fatigue.

[knitty kitty]

I've learned that one is supposed to take six to eight weeks off vitamin supplements before testing for deficiencies.  Most B vitamins can be stored for that long, however, in thiamine deficiency, your thiamine stores can be depleted in as little as nine days.  So, no wonder @Wheatwacked starts to feel sick without them by day 10.

Blood tests can reflect how much of a vitamin you've consumed in the previous twenty-four to forty-eight hours.

 

 

[knitty kitty]

@sae0693,

Ptosis can be a symptom of Thiamine deficiency, as well as fatigue, depression and anxiety.  I've experienced all this myself.

The bloating can be caused by Small Intestinal Bacterial Overgrowth.  Thiamine usually keeps these carbohydrate-loving bacteria in check, but without plenty of Thiamine, the nasty buggers spread into the small intestine.  They're supposed to stay in the large intestine.  

When Thiamine becomes deficient, the special doorways (transporters) into the cells made for thiamine become locked.  To get the thiamine transporters to open and function properly, large doses of thiamine are needed to storm the doors and get inside the cells.  So I took high dose Thiamine (minimum of 300-500 to 1500 mg of thiamine hydrochloride a day).  Improvements occurred within hours for me and continued for months.  I still take a maintenance dose of Thiamine daily.  I've found different forms of Thiamine, Allithiamine and Benfotiamine, bring additional benefits.  Benfotiamine helps repair the intestines.  Allithiamine crosses the blood brain barrier and helps with the anxiety, brain fog, depression and the ptosis.  

Thiamine is nontoxic and safe in high doses.  Doctors use high dose Thiamine to help CoVid patients.  Patients with higher amounts of Thiamine in their blood have lighter CoVid symptoms.

The World Health Organization (WHO) has a field test for thiamine insufficiency or deficiency.  If you have difficulty or cannot rise at all from a squat, you probably have thiamine deficiency.  Thiamine is given and if improvement is seen, thiamine deficiency is diagnosed.  

Have you thought about a genetic test for the most common Celiac genes?  You don't have to consume gluten to get a genetic test.  Some doctors will make a diagnosis of Celiac Disease if you have Celiac genes and health improvement is seen on a gluten free diet.  

Hope you feel better!  Keep us posted on your progress!

[marcel g]

On 4/24/2022 at 1:14 AM, RedFacedJock said:

The weakness you're experiencing may be a mild form of Anaemia. It's not uncommon for Celiac's to have an Iron deficiency due to the leaky gut caused by Gluten consumption. Iron plays a vital role in the quality of red blood cells in the body for carrying oxygen to the organs. Most multi-vitamins only offer a fraction of the RDA of Iron in them. So it may be worth getting a stand alone Iron Supplement. Or better yet, get more seafood, leafy greens and dried fruit in your diet. Salmon, Spinach, Raisins... etc are all Iron rich and may help to lift the fatigue.

Can it be a mild form of anemia if my blood tests for iron and ferritin and red blood cell counts have all been normal?

[marcel g]

On 4/24/2022 at 3:20 AM, knitty kitty said:

@sae0693,

Ptosis can be a symptom of Thiamine deficiency, as well as fatigue, depression and anxiety.  I've experienced all this myself.

The bloating can be caused by Small Intestinal Bacterial Overgrowth.  Thiamine usually keeps these carbohydrate-loving bacteria in check, but without plenty of Thiamine, the nasty buggers spread into the small intestine.  They're supposed to stay in the large intestine.  

When Thiamine becomes deficient, the special doorways (transporters) into the cells made for thiamine become locked.  To get the thiamine transporters to open and function properly, large doses of thiamine are needed to storm the doors and get inside the cells.  So I took high dose Thiamine (minimum of 300-500 to 1500 mg of thiamine hydrochloride a day).  Improvements occurred within hours for me and continued for months.  I still take a maintenance dose of Thiamine daily.  I've found different forms of Thiamine, Allithiamine and Benfotiamine, bring additional benefits.  Benfotiamine helps repair the intestines.  Allithiamine crosses the blood brain barrier and helps with the anxiety, brain fog, depression and the ptosis.  

Thiamine is nontoxic and safe in high doses.  Doctors use high dose Thiamine to help CoVid patients.  Patients with higher amounts of Thiamine in their blood have lighter CoVid symptoms.

The World Health Organization (WHO) has a field test for thiamine insufficiency or deficiency.  If you have difficulty or cannot rise at all from a squat, you probably have thiamine deficiency.  Thiamine is given and if improvement is seen, thiamine deficiency is diagnosed.  

Have you thought about a genetic test for the most common Celiac genes?  You don't have to consume gluten to get a genetic test.  Some doctors will make a diagnosis of Celiac Disease if you have Celiac genes and health improvement is seen on a gluten free diet.  

Hope you feel better!  Keep us posted on your progress!

based on this I've just purchased some thiamine tablets, although I still haven't checked with my doctor. I have had no difficulty with getting up from a squat since the fatigue really started, but I've been doing squats and lunges and played a lot of hockey up then, so my legs were fairly strong to begin with.

I'm going to start with 300mg / day and work my way up to higher amounts.

I'm travelling back to Canada during the school break, so I'm going to try to get the Celiac gene test when I'm there.

I am feeling better since removing the inadvertent gluten from my diet about 18 days ago, mainly I feel less foggy, and my BMs have also improved a lot. (the probiotics might be helping with the last one too, but it's the best they've ever been.) 
The fatigue has improved, but is still there. I still need multiple naps to get through a day.  Maybe a 10-20% improvement.

The tingling and pins and needles and muscle twitching is still the same, or the changes have been small enough that I can't say either way.
Thanks for all the responses.

 

[trents]

8 hours ago, marcel g said:

Can it be a mild form of anemia if my blood tests for iron and ferritin and red blood cell counts have all been normal?

Anemia per se has would seem to have been ruled out by those tests.

[knitty kitty]

@marcel g,

You may want to add a magnesium citrate supplement.  Thiamine and magnesium work together.  Magnesium may help your pins and needles and muscle twitches.