Sick all the time

[Fran4]

Joined this website to try to feel a little less alone. I was diagnosed with celiac disease 5 years ago and have been on a strict gluten free diet since then. I felt better for about a year but since then my health issues have been all over the place. I have chronic migraines which took 4 years to find any medication that worked and I just always seem to feel bad. My body never feels right. I deal with horrible anxiety because of this because I fear that there is something more wrong with me like I am going to die but the doctors say I'm fine. They told me to see a therapist because it is "in my head". Which I did and I still feel sick all the time. I didn't know that having celiac disease could cause so many side effects. I can cope for the most part but sometimes it really weighs me down not feeling good all the time. I also just feel like a burden to my family, friends, or boyfriend that I am always sick and feeling bad. I feel like it will make them hate me and leave cause its too annoying to deal with. I don't know if anyone else feels this way but just so much feels wrong all the time and its overwhelming and defeating. Some things I deal with are the sensation of being full without eating, random muscle fatigue, anxiety, belly pains, acid reflux, breathing issues, fatigue, head aches, and constipation. Really looking for any advice. 

[trents]

Welcome to the forum, Fran4!

It is common for people with celiac disease to develop allergies and intolerances to foods that do not contain gluten. Celiac disease sets the immune system on edge and it overreacts to a lot of different things besides gluten to produce similar symptoms. Dairy and soy allergies/intolerances are quite common and we are hearing on the forum from posters that eggs and corn are also causing problems for many celiacs. Also, about 10% of celiacs react to the protein in oats like they do that in wheat, barley and rye. So my suggestion is that you begin to look for reactions to other, non gluten foods that could be causing your symptoms. 

Are you taking any vitamin and mineral supplements? Celiacs typically suffer from vitamin and mineral deficiencies because celiac disease damages the lining of the small bowel where these things are absorbed into the body. If you are not already, I would suggest you start taking a good adult multivitamin and a high potency B-complex. Costco's Nature Made brand are excellent, gluten free products in that regard. Nutrient deficiencies can often produce mood problems such as depression.

I too suffer from cluster headaches and an occasional migraine. Sumatriptan works well for me. Usually, I can get by on half a tab (25mg) if I take it early in the onset. What are you on if you don't mind me asking.

It is often the case that our perception of what others are thinking/feeling about us is inaccurate. Have family members and boyfriend said things to you that make you feel that you are a burden or is this your assumption?

Edited February 22, 2021 by trents

[Fran4]

4 minutes ago, trents said:

Welcome to the forum, Fran4.

It is common for people with celiac disease to develop allergies and intolerances to foods that do not contain gluten. Celiac disease sets the immune system on edge and it overreacts to a lot of different things besides gluten to produce similar symptoms. Dairy and soy allergies/intolerances are quite common and we are hearing on the forum from posters that eggs and corn are also causing problems for many celiacs. Also, about 10% of celiacs react to the protein in oats like they do that in wheat, barley and rye. So my suggestion is that you begin to look for reactions to other, non gluten foods that could be causing your symptoms. 

Are you taking any vitamin and mineral supplements? Celiacs typically suffer from vitamin and mineral deficiencies because celiac disease damages the lining of the small bowel where these things are absorbed into the body. If you are not already, I would suggest you start taking a good adult multivitamin and a high potency B-complex. Costco's Nature Made brand are excellent, gluten free products in that regard. Nutrient deficiencies can often produce mood problems such as depression.

I too suffer from cluster headaches and an occasional migraine. Sumatriptan works well for me. Usually, I can get by on half a tab (25mg) if I take it early in the onset. What are you on if you don't mind me asking.

It is often the case that our perception of what others are thinking/feeling about us is inaccurate. Have family members and boyfriend said things to you that make you feel that you are a burden or is this your assumption?

I think I will start a food journal then too see if there is any food that is causing problems with my gut. I was on vitamins for little bit but then stopped because weird things were happening with my body and my doctor told me to stop taking them to see if that would help. I think it was my probiotic though that was causing me numbness in my hands and feet, so I should start taking vitamins again. I have seen from other people's posts now that some of my side effects can be from low b12. I

have been on 30 mg of Nortriptyline daily for almost a year now for my migraines. It has been huge in helping reduce the number of migraines I have weekly and their severity. 

No, they have never said anything about it being too much but I just worry. Having celiac disease already affects my life so much I don't want it to ruin other aspects. It is probably an irrational fear. 

[trents]

Several of our forum members are really knowledgeable with regard to vitamin and mineral deficiencies. Hopefully, some of them will chime in with some more targeted suggestions. Yes, B12 deficiency is very common in the celiac population and so are thiamine, niacin and magnesium. A good high potency B-complex along with a multivitamin should cover most of those bases. B vitamins are water soluble so there should be no danger in overdosing. You just pee out the excess.

Edited February 22, 2021 by trents

[Fran4]

Just now, trents said:

Several of our forum members are really knowledgeable with regard to vitamin and mineral deficiencies. Hopefully, some of them will chime in with some more targeted suggestions. Yes, B12 deficiency is very common in the celiac population and so are thiamine, niacin and magnesium. A good high potency B-complex along with a multivitamin should cover most of those bases.

Thank you so much for your help! 

[trents]

Oh! Have you been checked recently for iron deficiency anemia? You mentioned you suffered from fatigue.

[knitty kitty]

Fran4, 

Welcome to the forum!   

I'm a migraine sufferer, as well. 

I get ophthalmic migraines, with visual disturbances when exposed to triggers (foods like gluten, dairy, and computer screens).  I found my chronic migraines respond well to high dose Thiamine.  I also take a B Complex because all of the eight B vitamins need each other to work properly.  Riboflavin is also beneficial for migraines.   And I take magnesium because it helps thiamine work.

Here's a link to Dr. Lonsdale and Dr. Marrs' website on thiamine deficiency and its health problems.  Be sure to scroll to the very, very bottom for the doctors' responses to questions.

"Migraine, Diet, and Thiamine"

https://www.hormonesmatter.com/migraine-diet-thiamine/

And...

https://www.hormonesmatter.com/dietary-mayhem-disease-thiamine-choked-engine-syndrome/

And....

https://www.google.com/search?q=migraines+and+thiamine+deficiency&oq=migraines+and+thiamine+deficiency&aqs=heirloom-srp..0l5

 

Celiac Disease damages the small intestine where most of the B vitamins are absorbed, like trents said.  Thiamine and most of the other B vitamins can't be stored in the body for long.  Thiamine deficiency can occur in as little as ten days.  

Thiamine is used throughout the body and brain to provide energy to your cells.  During illness or times of stress, your body requires more vitamins, especially thiamine.   

The symptoms you listed at the bottom of your post are all subtle symptoms of thiamine deficiency.  I had them all. And I was told it was all in my head, too.  My doctors were clueless about vitamin deficiencies and Celiac Disease. Through a ton of research, I found Dr. Lonsdale's high dose thiamine and it really does work! 

I hope this helps!  

 

[Fran4]

7 hours ago, knitty kitty said:

Fran4, 

Welcome to the forum!   

I'm a migraine sufferer, as well. 

I get ophthalmic migraines, with visual disturbances when exposed to triggers (foods like gluten, dairy, and computer screens).  I found my chronic migraines respond well to high dose Thiamine.  I also take a B Complex because all of the eight B vitamins need each other to work properly.  Riboflavin is also beneficial for migraines.   And I take magnesium because it helps thiamine work.

Here's a link to Dr. Lonsdale and Dr. Marrs' website on thiamine deficiency and its health problems.  Be sure to scroll to the very, very bottom for the doctors' responses to questions.

"Migraine, Diet, and Thiamine"

https://www.hormonesmatter.com/migraine-diet-thiamine/

And...

https://www.hormonesmatter.com/dietary-mayhem-disease-thiamine-choked-engine-syndrome/

And....

https://www.google.com/search?q=migraines+and+thiamine+deficiency&oq=migraines+and+thiamine+deficiency&aqs=heirloom-srp..0l5

 

Celiac Disease damages the small intestine where most of the B vitamins are absorbed, like trents said.  Thiamine and most of the other B vitamins can't be stored in the body for long.  Thiamine deficiency can occur in as little as ten days.  

Thiamine is used throughout the body and brain to provide energy to your cells.  During illness or times of stress, your body requires more vitamins, especially thiamine.   

The symptoms you listed at the bottom of your post are all subtle symptoms of thiamine deficiency.  I had them all. And I was told it was all in my head, too.  My doctors were clueless about vitamin deficiencies and Celiac Disease. Through a ton of research, I found Dr. Lonsdale's high dose thiamine and it really does work! 

I hope this helps!  

 

I have never heard of a thiamine deficiency. Ill look into it! Thank you so much for your response and the articles you attached. 

[Fran4]

8 hours ago, trents said:

Oh! Have you been checked recently for iron deficiency anemia? You mentioned you suffered from fatigue.

I have been checked for anemia a couple times and always seem to be right on the bottom of the normal range but have never been diagnosed. 

[trents]

If it's been awhile sense you were checked for anemia it might be a good idea to have it redone. Anemia can be tied to poor uptake of B12.

[CMCM]

It sounds like you could have additional food intolerances or sensitivities.  With celiac disease, you can take on more intolerances and even though you are gluten free, you sense that you are not healing completely.  It's very frustrating.

Using myself as an example, I can't really tolerate dairy, and the gluten free foods out there (breads, crackers, cookies etc.) really mess up my digestive system.  I believe it is one or more of the ingredients you find in gluten-free foods, such as alternative non gluten flours and all the starches etc.  Whatever it is, I'm better off not eating them, I've learned that.  I also have problems with corn and a few other things you would not suspect.  One crazy thing is that you can eat something and have no problem, then next time you will get sick from it so that makes it hard to pinpoint what is bothering you.

You might benefit from cutting back to a very restrictive diet that eliminates all grains, dairy, sugar (yes, sugar can exacerbate other problems in addition to causing its own problems).  I'm currently experimenting with a diet that is not only strictly gluten free, but totally free of the things I mentioned above.  Your list of what to eliminate might be different.   I'm giving it at least 6 months, and then I plan to introduce the possibly offending foods one at a time to see what happens.  Without doing this, I'll never be sure what all I can and can't eat  (beyond gluten).  

[Fran4]

On 3/24/2021 at 12:08 AM, CMCM said:

It sounds like you could have additional food intolerances or sensitivities.  With celiac disease, you can take on more intolerances and even though you are gluten free, you sense that you are not healing completely.  It's very frustrating.

Using myself as an example, I can't really tolerate dairy, and the gluten free foods out there (breads, crackers, cookies etc.) really mess up my digestive system.  I believe it is one or more of the ingredients you find in gluten-free foods, such as alternative non gluten flours and all the starches etc.  Whatever it is, I'm better off not eating them, I've learned that.  I also have problems with corn and a few other things you would not suspect.  One crazy thing is that you can eat something and have no problem, then next time you will get sick from it so that makes it hard to pinpoint what is bothering you.

You might benefit from cutting back to a very restrictive diet that eliminates all grains, dairy, sugar (yes, sugar can exacerbate other problems in addition to causing its own problems).  I'm currently experimenting with a diet that is not only strictly gluten free, but totally free of the things I mentioned above.  Your list of what to eliminate might be different.   I'm giving it at least 6 months, and then I plan to introduce the possibly offending foods one at a time to see what happens.  Without doing this, I'll never be sure what all I can and can't eat  (beyond gluten).  

Thank you very much for your response! I am going to try to start cutting down my diet to see how that might help. 

[BuddhaBar]

On 2/22/2021 at 6:56 AM, Fran4 said:

Some things I deal with are the sensation of being full without eating, random muscle fatigue, anxiety, belly pains, acid reflux, breathing issues, fatigue, head aches, and constipation. Really looking for any advice

The muscle fatigue, what does it feel like? Do you feel like you've climbed 10 stairs and your muscles are worn out when you've barely moved?
Breathing issues, do you feel like you can't take a deep breath? That your breath kinda "stops" half way?

Constipation is common on a gluten free diet. Gluten free foods lack in fiber. 

[Fran4]

5 hours ago, BuddhaBar said:

The muscle fatigue, what does it feel like? Do you feel like you've climbed 10 stairs and your muscles are worn out when you've barely moved?
Breathing issues, do you feel like you can't take a deep breath? That your breath kinda "stops" half way?

Constipation is common on a gluten free diet. Gluten free foods lack in fiber. 

The muscle fatigue would range from feeling like I can barely get upstairs to my right arm would be too tired to write. Some days minimal movement feels very difficult. It has gotten better since I have started taking a B complex and magnesium. 

The breathing issues feel almost as if I try to take a deep breath it makes me more out of breath. If that makes any sense. I feel like I have to be constantly focused on my breath. Sometimes it will feel like I am short of breath but I think that is when I have bad acid reflex. 

[BuddhaBar]

Muscle fatigue and shortness of breath are both symptoms of magnesium deficiency. Don't know what kind of magnesium supplement you've been taking, but magnesium citrate are better absorbed than magnesium oxide. 

I'm pretty sure your anxiety are making everything worse. It's normal to feel anxiety because of bad health, but the anxiety also makes your health even worse. It's a vicious cycle that's very hard to break once it's started. It's not all in your head, but your head makes it worse. Been there. 

[Fran4]

7 hours ago, BuddhaBar said:

Muscle fatigue and shortness of breath are both symptoms of magnesium deficiency. Don't know what kind of magnesium supplement you've been taking, but magnesium citrate are better absorbed than magnesium oxide. 

I'm pretty sure your anxiety are making everything worse. It's normal to feel anxiety because of bad health, but the anxiety also makes your health even worse. It's a vicious cycle that's very hard to break once it's started. It's not all in your head, but your head makes it worse. Been there. 

Is magnesium citrate something that I would take everyday? Do you have a supplement recommendation for magnesium citrate? 

[trents]

Be careful when taking magnesium supplements. They can have a definite laxative effect with some forms of it being worse about that than others.

[BuddhaBar]

@Fran4 Yes, you can take it every day. I live in Scandinavia so I'm not sure which brands are avaliable in the rest of the world, but I believe Solgar Magnesium Citrate is pretty international. (Yes, it is, looked it up https://www.amazon.com/Solgar-Magnesium-Absorbable-Promotes-Suitable/dp/B012T97SDQ)
It's a bit expensive, but it's high quality.

Like @trents say, be careful if you get a laxative effect. It might help you with the constipation, but if you get watery stools you should lower the dose because it's the first sign you're taking too much.

 

[Fran4]

12 hours ago, BuddhaBar said:

@Fran4 Yes, you can take it every day. I live in Scandinavia so I'm not sure which brands are avaliable in the rest of the world, but I believe Solgar Magnesium Citrate is pretty international. (Yes, it is, looked it up https://www.amazon.com/Solgar-Magnesium-Absorbable-Promotes-Suitable/dp/B012T97SDQ)
It's a bit expensive, but it's high quality.

Like @trents say, be careful if you get a laxative effect. It might help you with the constipation, but if you get watery stools you should lower the dose because it's the first sign you're taking too much.

 

I will look into it! Thank you very much for the suggestions!

14 hours ago, trents said:

Be careful when taking magnesium supplements. They can have a definite laxative effect with some forms of it being worse about that than others.

Okay, thank you! I haven't had that but I will be careful. 

[Scott Adams]

When I started taking magnesium citrate, and I use Nature Made from Costco as it is priced much better than most, I had to get used to it over a few weeks, during which I had to start and stop taking it a few times until my body got used to it, and the laxative effects went a way. It took me about a month to adjust to it.

[knitty kitty]

On 3/29/2021 at 10:57 AM, Fran4 said:

The muscle fatigue would range from feeling like I can barely get upstairs to my right arm would be too tired to write. Some days minimal movement feels very difficult. It has gotten better since I have started taking a B complex and magnesium. 

The breathing issues feel almost as if I try to take a deep breath it makes me more out of breath. If that makes any sense. I feel like I have to be constantly focused on my breath. Sometimes it will feel like I am short of breath but I think that is when I have bad acid reflex. 

 

I had fatigue and shortness of breath like you describe when I was deficient in thiamine Vitamin B1.

The shortness of breath is called sailors' asthma.  Your body needs thiamine to "burn" oxygen and provide energy for your body to function.  No thiamine, no energy, hence the fatigue and feeling like you can't get enough air (air hunger).  The classic name for thiamine deficiency is "Beri beri" meaning "I can't, I can't."

The World Health Organization has a field test for thiamine deficiency.  Can you rise from a squat? 

I failed this test miserably.  I had squatted down to retrieve something from the bottom shelf in the grocery store (going down wasn't a problem), but I could not straighten my legs to stand.  My legs were frozen in a squat.  

Here's an article about thiamine and sailors' asthma.....

An Unusual Treatment for Asthma

https://www.hormonesmatter.com/asthma-a1at-deficiency-thiamine/

 

I had to take high dose thiamine (>500mg) to resolve my deficiency.  Thiamine is water soluble and nontoxic even in high doses.  Any excess is excreted in urine.  

Hope this helps!

 

[Fran4]

On 4/3/2021 at 1:09 AM, knitty kitty said:

 

I had fatigue and shortness of breath like you describe when I was deficient in thiamine Vitamin B1.

The shortness of breath is called sailors' asthma.  Your body needs thiamine to "burn" oxygen and provide energy for your body to function.  No thiamine, no energy, hence the fatigue and feeling like you can't get enough air (air hunger).  The classic name for thiamine deficiency is "Beri beri" meaning "I can't, I can't."

The World Health Organization has a field test for thiamine deficiency.  Can you rise from a squat? 

I failed this test miserably.  I had squatted down to retrieve something from the bottom shelf in the grocery store (going down wasn't a problem), but I could not straighten my legs to stand.  My legs were frozen in a squat.  

Here's an article about thiamine and sailors' asthma.....

An Unusual Treatment for Asthma

https://www.hormonesmatter.com/asthma-a1at-deficiency-thiamine/

 

I had to take high dose thiamine (>500mg) to resolve my deficiency.  Thiamine is water soluble and nontoxic even in high doses.  Any excess is excreted in urine.  

Hope this helps!

 

I work out regularly by lifting but I often feel that I am more out of breath than I should be. Taking a b complex (which has thiamine) has helped a little bit but not entirely. Should I take a thiamine supplement on top of that? 

[knitty kitty]

Yes, thiamine is safe, even in high doses.  There's no toxicity.  I take a B Complex plus extra thiamine, Allithiamine.  

As someone who works out, you have a higher metabolic need for thiamine.  Thiamine is necessary to provide energy for those muscles to work.  

Metabolic need for thiamine increases when you're an athlete, work out of doors and are exposed to heat and humidity, if you've been ill, or are diabetic.  

When you have an insufficiency of thiamine, the more thiamine you take, the easier the thiamine can get into the cells.  

Doctors in hospitals give high dose thiamine to intubated CoVid patients to help them breathe on respirators.  

[Fran4]

1 hour ago, knitty kitty said:

Yes, thiamine is safe, even in high doses.  There's no toxicity.  I take a B Complex plus extra thiamine, Allithiamine.  

As someone who works out, you have a higher metabolic need for thiamine.  Thiamine is necessary to provide energy for those muscles to work.  

Metabolic need for thiamine increases when you're an athlete, work out of doors and are exposed to heat and humidity, if you've been ill, or are diabetic.  

When you have an insufficiency of thiamine, the more thiamine you take, the easier the thiamine can get into the cells.  

Doctors in hospitals give high dose thiamine to intubated CoVid patients to help them breathe on respirators.  

how many mg should I take? 

[knitty kitty]

Thiamine comes in different forms.  

Thiamine HCl is what I started taking at first.  I started taking 100 mgs with each meal.  Three hundred mgs a day was working, but I had read studies saying some people get better results at 500 mg.  So, Celiac Guinea Pig that I am, I added more.  I guess I was one of those people.  Vast improvements! 

Later, I found Benfotiamine and Allithiamine, a fat based forms of thiamine that can get into cells easily.  Benfotiamine is great for my Type Two Diabetes, improving peripheral neuropathy and insulin resistance.  Allithiamine crosses the blood brain barrier very easily and the difference there was stunning.  

I've been taking different amounts of each, in varying combinations.  When my pee smells like I've eaten asparagus, I skip a dose of two.  (Thiamine and asparagus both contain sulfur hence the rotten egg smell.)  Thiamine's half life is two and a half hours, so no lingering effects there.  And you'll get better results if you space out your doses.  The worst you'll get is a tummy ache if you take huge amounts all at once.  

There's a few days after starting thiamine where you might feel worse than usual, but stick with taking thiamine.  It goes away.  It takes a few days for the body to start running on all cylinders.  

You may want to add a magnesium glycinate supplement because thiamine needs magnesium to work properly.  Do NOT take high doses of magnesium because it acts as a laxative.

Find what works best for you.  Everyone is different.  

Keep us posted on your progress.