Extreme Fatigue Advice

[Brett92]

(27 year old male)

Hello everyone, 

I am seeking some advice or seeing if anyone has had or still has a similar experience regarding extreme fatigue post diagnosis and conducting a gluten free diet.

Basically November last year I travelled to South East Asia and got viral gastro over there which resulted in extreme fatigue and brain fog ( for me its like being drunk and semi out of it) which never went away.

Originally my doctor assumed i was just recovering from possible post viral fatigue, however, after 8 months of blood tests, fecal tests and urine tests (with nothing remarkable showing up) i finally had a positive gluten intolerance blood test followed by a confirmed endoscopy diagnosis of ceoliac disease.

I am now 4 months gluten free and have no improvement of fatigue. (I had minor gastro symptoms that did reslove). 

I am very strictly following a gluten free diet and also follow a very strict elimination diet which pretty much consists of whole foods ( meat, fruit and veg). 

I also take every vitamin i could find on these forums (B12, multi, fish oil, C, D, magnesium, cq10, nadh , calcium ... plus a couple more) i have also had a sleep study which did show minor sleep apnea ( i use a cpap machine.. even though I was instructed it probably wouldn't change anything since my apnea was so mild) 

I am also taking lexapro... for depression and anxiety. ( been on for 3 years)

My biggest issue is I am CONSTANTLY fatigued... and any amount of exercise absolutely exhausts me and leaves me almost bed ridden for a few days. I am a little over weight but since eating healthy have dropped a few kgs but I could lose 5-10 more. 

I used to be extremely fit and run marathons but I just cannot exercise without needing to sleep after. (During exercise im fine).

Please help... is this common with ceoliac disease?or is there something more going on?

Any input would be appreciated. 

P.s my regular gp has told me my stomach probably needs time to heal... but the gastro specialist who diagnosed me has said its probably my depression... which I honestly just don't think it is because my motivation is incredibly high... but I can't rule it out.

 

[GFinDC]

Doctors like to blame many symptoms on depression IMHO.  And they are right to a certain extent.  But depression can also be a symptom of physical illness.  Fatigue can be caused by malnutrition.  There is also a possibility of parasitic infection causing fatigue and weakness.  Your doctor can check for that.

Sometimes a short juice only fast of a day or 2 can give our systems a rest and maybe reset the GI system.  So that might be something to try.  If you feel better fasting then it would be wise to re-examine everything in your diet including pills and supplements.  Some supplements include barley or wheat and those are of course problems for people with celiac.  Even some teas contain barley malt for flavor.

Some people experience dramatic improvement of symptoms in 6 months.  But full recovery can take 18 months or more.

Edited December 26, 2020 by GFinDC

[Scott Adams]

I think you should continue to get regular exercise if possible because it will help you stay healthy, reduce depression, and maybe even help you recover faster from celiac disease, etc. 

It’s possible you have additional food intolerance and/or food allergy issues, so you may want to explore this possibility.

[Ivana]

Hi, I feel silly replying because I am sure your doctor thought of everything by now, but still: I suppose you checked your ferritin levels, not just Fe and hemoglobin? Also, maybe it is time to change your AD? Maybe they stopped working, or started having new/different side effects. I hope you find the cause and feel better soon!

[Brett92]

A few months ago I did try a carnivore diet for a couple of weeks as I heard it can be beneficial for people with autoimmune issues. During this time I did have the highest energy levels I have had in a long time however by the end of the 2 weeks the thought of eating meat was nauseating. I think I might retry this diet just to see if it was just a random week of energy or if maybe there are more food intolerances impacting me. The exercise is definitely something I want to do as it used to be one of my favourite hobbies. Its just every time i try to get back into it I feel so exhausted and my brain feels like its running at 10%. But I'm going to start up again and push through the fatigue... at least for several weeks to see if there is any improvement.  Also my ferritin levels are within normal range I just rechecked my results. I am wanting to cut out the Lexapro completely as I was thinking maybe my body isn't reacting well to it anymore... and of course I will run this by my doctor.

Thanks so much for the replies. 😃

[NNowak]

23 minutes ago, Brett92 said:

A few months ago I did try a carnivore diet for a couple of weeks as I heard it can be beneficial for people with autoimmune issues. During this time I did have the highest energy levels I have had in a long time however by the end of the 2 weeks the thought of eating meat was nauseating. I think I might retry this diet just to see if it was just a random week of energy or if maybe there are more food intolerances impacting me. The exercise is definitely something I want to do as it used to be one of my favourite hobbies. Its just every time i try to get back into it I feel so exhausted and my brain feels like its running at 10%. But I'm going to start up again and push through the fatigue... at least for several weeks to see if there is any improvement.  Also my ferritin levels are within normal range I just rechecked my results. I am wanting to cut out the Lexapro completely as I was thinking maybe my body isn't reacting well to it anymore... and of course I will run this by my doctor.

Thanks so much for the replies. 😃

A functional medicine doctor will evaluate your GI function, as well as your other systems to see where you need assistance with your healing. I strongly recommend you look at a functional medicine professional to form a relationship with as you navigate through this chapter in your life. Microbiome, MTHFR, mitochondria, COMT, Vit D receptors, hormones and many other factors play a role in fatigue - functional medicine looks at these areas. It could be a simple case of your body needing an elimination diet to heal a bit more, or a bit more tweaking to your diet. Functional medicine deals with all of that. 

In health. 

[Kate333]

Doctors like to blame many symptoms on depression IMHO.  And they are right to a certain extent.  But depression can also be a symptom of physical illness. 

Yes.  But extreme depression/anxiety can also CAUSE (or manifest in) many physical symptoms, including constant, severe fatigue.  Or it could be a mix of both gut issues AND depression/anxiety.  That's certainly been the case for me, esp. since this pandemic and celiac disease diagnosis.

I agree with Ivana...it's worthwhile to ask your doc about adjusting the Lexapro dose (or trying a different AD).   Perhaps it's no longer as well absorbed since you had your acute gut virus back in Asia last year.  Also, serotonin, a major hormone affecting mood, energy levels resides mostly (90%) in the gut.  Any associated gut damage could have likely disrupted or limited your gut's ability to continue to produce serotonin, so you may likely need a a little extra help from a good AD, at least for the short term while your gut heals.  Once you have a follow-up endoscopy to confirm gut healing, ask your doc if you can wean off the AD. 

Also, I suggest taking a good hard look at your daily routine and sleep habits.  When you aren't exercising, do you spend a lot of time glued to your phone/computer/social media, esp. before bedtime?  Or do you find yourself "doom-scrolling" (either news or health conditions/symptoms...lol)?  If you have any or all of these habits, try a new one:  unplugging EVERYTHING a few hours before crawling into bed and make sure you aim for at least 8 hours a night.  

Another thought is to get a thyroid blood test.  Hypothyroid disease also causes severe fatigue and brain fog.  

Best of luck on your healing journey!

 

 

 

 

[DJFL77I]

4 months isn't long enough....  

Was your ANA factor tested?   could be another autoimmune issue..   healthy people often have positive ANA factor too though..

I would get off any depression drugs..   and treating it naturally through exercise etc..

[Brett92]

Yeah I think it is time to enlist the help of a functional medicine doctor the problem is I'm very sceptical in nature but at this point i'm willing to try anything. 

I am a bit of a screen addict so that could play some factor. Although in the past I have attempted very strict anti phone/ strict bed time routines but I only did that for a couple of weeks. Might be time to reattempt for longer. 

I don't recall having a ANA factor test so ill look into it.

I am going to my DR in the new year and i plan on asking him to test for a whole range of things... more so than what has been tested in the past. My last set of testing revealed the gluten intolerance so it does make me think maybe something else obscure has been missed or deemed too unlikely. I want to put forward testing for other autoimmune conditions and thoroughly checking my thyroid and vitamin/mineral levels.

Thanks all. 

[Posterboy]

On 12/26/2020 at 3:04 AM, Brett92 said:

I am also taking lexapro... for depression and anxiety. ( been on for 3 years)

My biggest issue is I am CONSTANTLY fatigued

On 12/26/2020 at 7:32 PM, Brett92 said:

I am wanting to cut out the Lexapro completely as I was thinking maybe my body isn't reacting well

Brett92,

I think you are having a reaction to your Lexapro......SSRI are know to affect REM sleep and could be leading to your constant fatigue....

Here is a nice overview of Antidepressants affects on people's sleep.

https://www.psychiatrictimes.com/view/effects-antidepressants-sleep

Here also is how malnutrition can affect our mental health entitled "Understanding nutrition, depression and mental illnesses"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738337/

And here  is an older thread that might help you.

I hope this is helpful but it is not medical advice.

Posterboy,

[Wheatwacked]

Symptoms of Pantothenic acid (vitamin B5) deficiency may include: Headache, Fatigue, Irritability, restlessness, Disturbed sleep, Nausea, vomiting, stomach cramps, Numbness or burning sensation in hands or feet, Muscle cramps.

[Beverage]

Search for KnittyKitty posts about B1 thiamine deficiency!  It helped me TREMENDOUSLY!

[NNowak]

It’s not probable that the human body has a single deficiency of one B vitamin. The methylation process and how the body uses/recycles/stores our B vitamins is the likely cause of any B deficiency. That said, it’s more likely a collective deficiency of several B’s due to an autoimmune condition preventing absorption of B12, MTHFR, inflammation of the small intestine or digestive dysfunction. Long term use (more than 6 weeks) of PPIs also cause  increased risk of vitamin B deficiency. Best to use a high quality methylated B Complex vitamin if you suspect you may be low in any Bs. 

[Scott Adams]

Most celiacs should probably be on a high quality B complex, as well as supplement vitamin D. Many need to take magnesium citrate and zinc as well.

[NNowak]

Zinc is essential to healing the gut lining, as well as vitamin A. Magnesium can be tricky as some celiacs are constipated, and should take it in citrate form. Those that aren’t constipated should take magnesium theorate - as well as those that struggle with depression or anxiety. This is the only form of magnesium that crosses the blood brain barrier. Most Americans are deficient in magnesium, and it’s essential to good sleep and basic brain function. 
 

Vitamin D3 is actually a hormone that your body makes from direct exposure to sunlight. Our aversion to sun, sedentary lifestyle and overuse of sunscreens have depleted our D3 levels. Most Americans are deficient in D3 as well. Those with levels under 50 have been linked to poorer health outcomes. Functional medicine states optimal levels are above 70. I usually recommend a blood test prior to supplementation. 
 

Vitamin C is always a good idea during the winter months. Other supplements to research, resveratrol, quercetin, coQ10 and food sources of omega 3. 
 

Orthomolecular is always a safe brand and easy to find. 

[Posterboy]

On 1/6/2021 at 1:22 PM, Scott Adams said:

Most celiacs should probably be on a high quality B complex, as well as supplement vitamin D. Many need to take magnesium citrate and zinc as well.

Scott,

Thank you for that short and concise sentence that takes me two or three pages to explain!

I couldn't of said it better myself!  I always try and over explain things.

There is "No Formula" for Celiac disease but that is a good place to start.  So common in most Celiac's I heartly recommend to start there.

The only thing that might be better is start with an Enzymic B-Vitamin or possibly add a Fat Soluble B-1 to a B-Complex.  And be sure to take it with meals.

Here is the research that shows most B-complex's have the form of B1 (Mononitrate or ThiamineHCL) that is only 5 percent absorbing...

https://www.naturalmedicinejournal.com/journal/2018-11/thiamine-deficiency-and-diabetic-polyneuropathy

quoting from the article...

"Thiamine is water-soluble.26 Absorption from the gut takes place mainly from the proximal small intestine primarily via an energy-dependent active transport system.28 Only about 5% of ingested thiamine is absorbed.29"

And now see how much higher the absorption rate is for the Fat Soluble forms...like Benfotamine found in the diabetic section of most health food stores...

"The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32"

And is why often when people take a Vitamin B-1....it doesn't seem to do any good....because only 5 percent is available to the body.

But when they take a Fat Soluble B-1 like Benfotiamine, Allithiamne or Lipothiamine they FEEL much better and their energy levels go UP!

I hope this is helpful but it is not medical advice.

Posterboy,

[Wheatwacked]

On 12/26/2020 at 4:04 AM, Brett92 said:

(27 year old male)

Hello everyone, 

I am seeking some advice or seeing if anyone has had or still has a similar experience regarding extreme fatigue post diagnosis and conducting a gluten free diet.

Try Joel Fuhrman, MD Six Week Plan, from his book Eat to Live. I start my day with 6 oz. strawberries and 6 oz. (170 grams) of blueberries.

Simple version: Breakfast: Fresh Fruit (4 daily)
Lunch: Salad, beans (one cup daily) on top, fruit
Dinner: Salad, two cooked vegetables(1 pound), fruit
Include raw vegetables such as snow peas, red bell peppers, carrots, raw peas, tomatoes, cucumbers, and sprouts (goal 1 pound daily).