Chronic tightness everywhere

[Gamma]

I was diagnosed at 7 or 8 years old I use to have the typical symptoms of diarrhoea waking up in the middle of the night with blasting headaches and fevers. After following the diet I felt better. However after I reached 16 I started to eat small amounts of gluten as I realised I had none of the symptoms anymore and eventually ate gluten like anyone else probably more since I’m a big eater I’ve been doing this for 6 years. Now my problem is 4 years ago I went to the gym and trained very heavy weights did the typical compound lifts deadlift squat bench shoulder press I was using a protein shake that contained wheat as well. The very first session of deadlifting I got pain in my Lowe back and that annoyed me so I pushed through the pain thinking it was normal over time my lower back became very stiff and didn’t like bending eventually the stiffness and pain got so bad I had to stop so I continued to bench press shoulder press and do dips and over time my collar bone experienced excruciating sharp pain and tightness. I then realised like the idiot I am that I was in deep trouble and knew that I couldn’t train anymore and that this pain wasn’t normal since then it has spread all over my body and gotten a lot worse. I have been to so many physios chiropractors and massage therapists and have only gotten worse. Now a few months ago I was in a physio Session with a physio I’d been seeing for a while because he had good credentials and reviews. I remember in the first session when I told him about all my pain and mentioned I’m a ceoliac he looked at me seriously and then continued to write down his notes. When he couldn’t figure out what’s wrong with me he said I think this is all a result of you being an under-managed coeliac and not taking your diet seriously. He’s the only person that has said that so i tried the diet for 2 months not strictly definitely got cross contamination but as a silent coeliac i wouldn’t react to it. after visiting another physio that can’t figure out what’s wrong with me I’ve decided to go back on my diet as I feel it’s the only thing that makes sense with what I’m going through it’s the only thing I haven’t tried. I want to know has this happened to any of you i have searched online about the effects gluten can have on people and some have stated that pain is a major symptom. I can’t explain how bad my pain is as it’s quite literally my whole body in severe tightness I don’t think it’s fibromyalgia as I am a man and I don’t have the main symptoms apart from tightness. But I need to know if I can beat this thing nearly 5 years of my life has been taken away. I know some of you may think this incurable and is unrelated to coeliac but if there’s anyone out there that has experienced this hell and fixed themselves to at least a manageable level please let me know. 

[trents]

Welcome to the forum, Gamma!

First, let me offer this primer on getting a handle on gluten free eating because it's much more involved than most people imagine when they first start out on the gluten-free journey. Most people who think they are eating gluten-free are actually eating a lower gluten diet than the general public but not truly gluten free. Eating out poses the biggest threat. And as you know, CC (cross contamination) needs to be taken seriously. This whole thing is much more of a challenge for silent celiacs like you who don't have obvious GI symptoms to rely on when  getting glutened.

The other thing is addressing the vitamin and mineral deficiencies that invariably accrue when celiac disease goes undiagnosed or unheeded for numbers of years because of the damage done to the villous lining of t he small bowel where the nutrition from our diet is absorbed. B-complex, D3, Magnesium at the minimum. All our vitamins and supplements need to be screened to make sure you are getting gluten in them.

[Gamma]

2 hours ago, trents said:

Welcome to the forum, Gamma!

First, let me offer this primer on getting a handle on gluten free eating because it's much more involved than most people imagine when they first start out on the gluten-free journey. Most people who think they are eating gluten-free are actually eating a lower gluten diet than the general public but not truly gluten free. Eating out poses the biggest threat. And as you know, CC (cross contamination) needs to be taken seriously. This whole thing is much more of a challenge for silent celiacs like you who don't have obvious GI symptoms to rely on when  getting glutened.

The other thing is addressing the vitamin and mineral deficiencies that invariably accrue when celiac disease goes undiagnosed or unheeded for numbers of years because of the damage done to the villous lining of t he small bowel where the nutrition from our diet is absorbed. B-complex, D3, Magnesium at the minimum. All our vitamins and supplements need to be screened to make sure you are getting gluten in them.

Thanks. I understand now that I need to be extra careful with what I eat. I’ve stopped eating out to avoid cc and only eat at home. I know that as a silent celiac it’ll be more difficult as I won’t react to the gluten in the traditional way. I’ve only been strictly gluten free for a week and a half I know that’s not enough time for the villi to recover but I really want to know if this is going to help me physically it seems impossible to me that a diet can fix such severe random pain but it’s the only option I’ve got. I’ve been taking omega 3 but I’ll start taking magnesium vitamin b and vitamin D I’ve had all my levels checked and the doctors said they’re all fine just my vitamin D is a little low but not too bad regardless I’ll take more supplements if it can increase the recovery time. 

[trents]

Celiac disease can result in inflammation in various parts of the body.

Choose only vitamins and supplements that are labeled gluten-free. Choose the glycinate or citrate forms of magnesium. They are more expensive but absorbed better than Magnesium oxide, the most common form you see in the stores. The better the magnesium is absorbed the less likely it is to cause loose stools (think "milk of magnesia"). Even so, start small and titrate up to the point where you start to get a laxative effect then back off a little. Magnesium is important for bone health and some other things. Take at least 5000IU of D3. Don't worry about taking large doses of B vitamins. They are water soluble and so non toxic. You will pee out excess and you will likely notice that your pee is bright yellow from the B2.

Serum vitamin level testing is not always helpful as it doesn't necessarily measure how much is actually getting into the tissues from the blood. That's why it may be helpful to take larger than RMDA levels of these things to compensate for that.

[Gamma]

1 hour ago, trents said:

Celiac disease can result in inflammation in various parts of the body.

Choose only vitamins and supplements that are labeled gluten-free. Choose the glycinate or citrate forms of magnesium. They are more expensive but absorbed better than Magnesium oxide, the most common form you see in the stores. The better the magnesium is absorbed the less likely it is to cause loose stools (think "milk of magnesia"). Even so, start small and titrate up to the point where you start to get a laxative effect then back off a little. Magnesium is important for bone health and some other things. Take at least 5000IU of D3. Don't worry about taking large doses of B vitamins. They are water soluble and so non toxic. You will pee out excess and you will likely notice that your pee is bright yellow from the B2.

Serum vitamin level testing is not always helpful as it doesn't necessarily measure how much is actually getting into the tissues from the blood. That's why it may be helpful to take larger than RMDA levels of these things to compensate for that.

So your saying gluten can cause tightness and inflammation in the areas I overworked in the gym and prevent the muscles from healing? Also is it okay to take these supplements at the same time or should I spread them out through out the day or even take them on different days? Thanks for your help 

[Sherma]

21 hours ago, Gamma said:

I was diagnosed at 7 or 8 years old I use to have the typical symptoms of diarrhoea waking up in the middle of the night with blasting headaches and fevers. After following the diet I felt better. However after I reached 16 I started to eat small amounts of gluten as I realised I had none of the symptoms anymore and eventually ate gluten like anyone else probably more since I’m a big eater I’ve been doing this for 6 years. Now my problem is 4 years ago I went to the gym and trained very heavy weights did the typical compound lifts deadlift squat bench shoulder press I was using a protein shake that contained wheat as well. The very first session of deadlifting I got pain in my Lowe back and that annoyed me so I pushed through the pain thinking it was normal over time my lower back became very stiff and didn’t like bending eventually the stiffness and pain got so bad I had to stop so I continued to bench press shoulder press and do dips and over time my collar bone experienced excruciating sharp pain and tightness. I then realised like the idiot I am that I was in deep trouble and knew that I couldn’t train anymore and that this pain wasn’t normal since then it has spread all over my body and gotten a lot worse. I have been to so many physios chiropractors and massage therapists and have only gotten worse. Now a few months ago I was in a physio Session with a physio I’d been seeing for a while because he had good credentials and reviews. I remember in the first session when I told him about all my pain and mentioned I’m a ceoliac he looked at me seriously and then continued to write down his notes. When he couldn’t figure out what’s wrong with me he said I think this is all a result of you being an under-managed coeliac and not taking your diet seriously. He’s the only person that has said that so i tried the diet for 2 months not strictly definitely got cross contamination but as a silent coeliac i wouldn’t to it. after visiting another physio that can’t figure out what’s wrong with me I’ve decided to go back on my diet as I feel it’s the only thing that makes sense with what I’m going through it’s the only thing I haven’t tried. I want to know has this happened to any of you i have searched online about the effects gluten can have on people and some have stated that pain is a major symptom. I can’t explain how bad my pain is as it’s quite literally my whole body in severe tightness I don’t think it’s fibromyalgia as I am a man and I don’t have the main symptoms apart from tightness. But I need to know if I can beat this thing nearly 5 years of my life has been taken away. I know some of you may think this incurable and is unrelated to coeliac but if there’s anyone out there that has experienced this hell and fixed themselves to at least a manageable level please let me know. 

When I began the celiac diet seriously, 90% of the fibromyalgia left!  The tight muscles, I've had since age 16 - I am 76 now, but that too has decreased noticeably. Hope this encourages you. I am female but these problems can hit anyone at anytime, it seems.

[Gamma]

2 hours ago, Sherma said:

When I began the celiac diet seriously, 90% of the fibromyalgia left!  The tight muscles, I've had since age 16 - I am 76 now, but that too has decreased noticeably. Hope this encourages you. I am female but these problems can hit anyone at anytime, it seems.

Glad you got better I’m just concerned as my symptoms started as a result of heavy weightlifting which I’ve never heard could cause fibromyalgia and also it being rare in men 

[trents]

18 hours ago, Gamma said:

So your saying gluten can cause tightness and inflammation in the areas I overworked in the gym and prevent the muscles from healing? Also is it okay to take these supplements at the same time or should I spread them out through out the day or even take them on different days? Thanks for your help 

https://www.glutenfreesociety.org/can-gluten-cause-muscle-and-joint-pain/

[knitty kitty]

Hello, @Gamma,

Athletes need more Thiamine, magnesium and other B vitamins to recover from exercise.  Thiamine is needed to break down and clear lactic acid build up after exercise.

Due to your Celiac Disease, you may not be absorbing sufficient amounts of vitamins and minerals.  Blood tests levels don't accurately reflect vitamin status as most vitamins work inside cells.  Blood tests reflect how much has been consumed in the previous 24-48 hours.

Here are some interesting articles...

Effect of physical activity on thiamine, riboflavin, and vitamin B-6 requirements

https://academic.oup.com/ajcn/article/72/2/598S/4729690

And...

Effects of thiamine supplementation on exercise-induced fatigue

https://pubmed.ncbi.nlm.nih.gov/8815395/

And...

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

You've already been diagnosed as a child. Autoimmune processes and symptoms change as we age.  Continued gluten consumption is not wise.  Treat your food as medicine.  

[Gamma]

1 hour ago, trents said:

https://www.glutenfreesociety.org/can-gluten-cause-muscle-and-joint-pain/

Thanks this was an interesting read 

[Gamma]

1 hour ago, knitty kitty said:

Hello, @Gamma,

Athletes need more Thiamine, magnesium and other B vitamins to recover from exercise.  Thiamine is needed to break down and clear lactic acid build up after exercise.

Due to your Celiac Disease, you may not be absorbing sufficient amounts of vitamins and minerals.  Blood tests levels don't accurately reflect vitamin status as most vitamins work inside cells.  Blood tests reflect how much has been consumed in the previous 24-48 hours.

Here are some interesting articles...

Effect of physical activity on thiamine, riboflavin, and vitamin B-6 requirements

https://academic.oup.com/ajcn/article/72/2/598S/4729690

And...

Effects of thiamine supplementation on exercise-induced fatigue

https://pubmed.ncbi.nlm.nih.gov/8815395/

And...

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

You've already been diagnosed as a child. Autoimmune processes and symptoms change as we age.  Continued gluten consumption is not wise.  Treat your food as medicine.  

Thanks didn’t know how important this vitamin was. And yes I understand it’s my own fault for not following the diet but I was not aware of how dangerous it could potentially be even my own doctors didn’t care that i wasn’t following it strictly they dont even  consider that it could be the cause of my pain  

[knitty kitty]

@Gamma,

Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  Doctors are trained to prescribe pharmaceuticals. 

One doctor told me he could not make money prescribing vitamins so refused to test for vitamin and mineral deficiencies even though my Vitamin D level was in the single digits.  And he only tested my Vitamin D level because my insurance would cover the cost.

Doctors don't receive adequate education on nutrition and its effects on our health.  They think inside small boxes.

I had half a dozen doctors ask if I drank alcohol.  After repeatedly insisting I didn't drink at all, they shrugged their shoulders and walked off.  No treatment given by one of them, no further testing.  Dismissed as hypochondriac.  They did not recognize the symptoms of Thiamine deficiency outside of alcoholism.  Seriously, if it walks like a duck and quacks like a duck, it probably is a duck. 

I went home in tears and dug out my books from university.  I couldn't remember diddlie-squat. I'm a microbiologist.  I had Wernicke's Encephalopathy, severe life-threatening thiamine deficiency.  

The World Health Organization says a deficiency of Thiamine can be diagnosed by giving high dose Thiamine and looking for symptom improvement.  

I took high dose Thiamine and had improvement within an hour!  It was amazing, astounding, a miracle. 

I was flabbergasted that not one of the doctors I had seen hadn't tried this cheap, simple test even though I was outside of the "alcoholism box". 

I have continued with high dose Thiamine and supplementation of the B Complex vitamins, fat soluble vitamins and minerals and a nutrient dense diet.  My improvements have been continuing for years.  

No, it's not our fault.  One expects doctors to know more. 

Knowledge is power.  

 

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

[Gamma]

26 minutes ago, knitty kitty said:

@Gamma,

Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  Doctors are trained to prescribe pharmaceuticals. 

One doctor told me he could not make money prescribing vitamins so refused to test for vitamin and mineral deficiencies even though my Vitamin D level was in the single digits.  And he only tested my Vitamin D level because my insurance would cover the cost.

Doctors don't receive adequate education on nutrition and its effects on our health.  They think inside small boxes.

I had half a dozen doctors ask if I drank alcohol.  After repeatedly insisting I didn't drink at all, they shrugged their shoulders and walked off.  No treatment given by one of them, no further testing.  Dismissed as hypochondriac.  They did not recognize the symptoms of Thiamine deficiency outside of alcoholism.  Seriously, if it walks like a duck and quacks like a duck, it probably is a duck. 

I went home in tears and dug out my books from university.  I couldn't remember diddlie-squat. I'm a microbiologist.  I had Wernicke's Encephalopathy, severe life-threatening thiamine deficiency.  

The World Health Organization says a deficiency of Thiamine can be diagnosed by giving high dose Thiamine and looking for symptom improvement.  

I took high dose Thiamine and had improvement within an hour!  It was amazing, astounding, a miracle. 

I was flabbergasted that not one of the doctors I had seen hadn't tried this cheap, simple test even though I was outside of the "alcoholism box". 

I have continued with high dose Thiamine and supplementation of the B Complex vitamins, fat soluble vitamins and minerals and a nutrient dense diet.  My improvements have been continuing for years.  

No, it's not our fault.  One expects doctors to know more. 

Knowledge is power.  

 

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

I like that your continuously improving I wish I could feel like that even if it was only slightly. It’s true that doctors are more like programmed robots rather than people willing to think outside the box but it’s so bloody frustrating when they can’t just straight up tell you that they don’t know what’s wrong. Anyways I appreciate the information I’m going to take these supplements and maintain a strict gluten free diet it has only been a week and a half as a strict celiac so no surprise there’s no changes but still I’m anxious about the whole thing nothing else has worked and this is my last resort. Another thing, what’s your opinion on gabapentin I take it on and off (couple times a week) for pain it was either that or tramadol which I refuse to take thanks.

[knitty kitty]

@Gamma,

I've taken gabapentin prior to vitamin supplementation and it didn't give me much relief.  

I was given gabapentin after a painful injury while supplementing with B Complex vitamins and Thiamine, and gabapentin worked much better.  

There's evidence supplementing with vitamins while taking gabapentin is better at nerve pain relief.  

The article is about women, but there are other research articles about the combination of gabapentin and B vitamins.  

 

"The comparative preemptive analgesic efficacy of addition of vitamin B complex to gabapentin versus gabapentin alone in women undergoing cesarean section under spinal anesthesia: A prospective randomized double-blind study"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5403081/

 

Learn about nutrition, vitamins and minerals.  There's eight B vitamins.  They all need each other to work properly, so take a B Complex supplement.  Take high dose Thiamine in the form of Benfotiamine and Magnesium Glycinate.  Vitamin C and the fat soluble vitamins, Vitamin A and Vitamin D are helpful in reducing inflammation.    

So glad you think outside the box!

[knitty kitty]

Keep us posted on your progress!

[Gamma]

23 hours ago, knitty kitty said:

Keep us posted on your progress!

I will thanks for your help. 

[Hdfrancis1]

On 10/3/2022 at 1:38 PM, knitty kitty said:

@Gamma,

Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  Doctors are trained to prescribe pharmaceuticals. 

One doctor told me he could not make money prescribing vitamins so refused to test for vitamin and mineral deficiencies even though my Vitamin D level was in the single digits.  And he only tested my Vitamin D level because my insurance would cover the cost.

Doctors don't receive adequate education on nutrition and its effects on our health.  They think inside small boxes.

I had half a dozen doctors ask if I drank alcohol.  After repeatedly insisting I didn't drink at all, they shrugged their shoulders and walked off.  No treatment given by one of them, no further testing.  Dismissed as hypochondriac.  They did not recognize the symptoms of Thiamine deficiency outside of alcoholism.  Seriously, if it walks like a duck and quacks like a duck, it probably is a duck. 

I went home in tears and dug out my books from university.  I couldn't remember diddlie-squat. I'm a microbiologist.  I had Wernicke's Encephalopathy, severe life-threatening thiamine deficiency.  

The World Health Organization says a deficiency of Thiamine can be diagnosed by giving high dose Thiamine and looking for symptom improvement.  

I took high dose Thiamine and had improvement within an hour!  It was amazing, astounding, a miracle. 

I was flabbergasted that not one of the doctors I had seen hadn't tried this cheap, simple test even though I was outside of the "alcoholism box". 

I have continued with high dose Thiamine and supplementation of the B Complex vitamins, fat soluble vitamins and minerals and a nutrient dense diet.  My improvements have been continuing for years.  

No, it's not our fault.  One expects doctors to know more. 

Knowledge is power.  

 

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

I started having a lot of trouble with my gut after a neck injury in 2020, which included pain medicine and gabapentin. I was diagnosed with celiac disease in 2010 and I am lactose intolerant. Gabapentin has lactose in it!! It's gluten-free but some celiac suffers, like myself, are lactose intolerant as well. My research found out that most capsules have gluten and/or lactose in it. Check out their website. 

I hope that this helps!! 

 

[knitty kitty]

@Hdfrancis1,

Thanks for sharing!  

I'm lactose intolerant, too, and I react to casein as well. 

Gabapentin also has sodium lauryl sulfate in it! 

I've had to eliminate sodium laurel sulfate containing items like toothpaste, soaps and shampoos because I have sulfite hypersensitivity.  

Knowledge is power!