Insomnia related to Celiac Disease?

[John Spoolman]

I was diagnosed with celiac disease in 1998, and over the years have developed serious insomnia problems.  I've heard that many celiac sufferers have trouble sleeping - true?  By trial & error I've found that if I avoid certain foods or supplements I sleep much better.  For instance, I don't sleep well (or at all) when I consume foods with high tannin (polyphenol) content (pecans, pistachio nuts, tea, blueberries, etc). Also foods containing high amounts of vitamin A and E (oil base vitamins) as well as certain inactive ingredients in supplements.  My sleep sensitivity could be related to the leaky gut condition but I don't really know.  Any other celiacs have problems with insomnia?

Edited September 27, 2019 by John Spoolman
to make topic more clear

[GFinDC]

Yes, I used to have problems with insomnia.  I assume you are eating gluten-free?  I was awake for 3 and a half days one time before being able to sleep a few hours.  My insomnia faded away after a year or so gluten-free.  You can find threads discussing insomnia by doing a search of the forum.

You may be reacting to other foods besides gluten.  It is not unusual to develop reactions to foods beyond just wheat, rye and barley.

[cyclinglady]

If I am running hyper (thyroid), I struggle with insomnia.  When was the last time you had your hormones checked?  I also need to stop drinking coffee by 3:00 pm.  

[John Spoolman]

On 9/27/2019 at 4:56 PM, GFinDC said:

Yes, I used to have problems with insomnia.  I assume you are eating gluten-free?  I was awake for 3 and a half days one time before being able to sleep a few hours.  My insomnia faded away after a year or so gluten-free.  You can find threads discussing insomnia by doing a search of the forum.

You may be reacting to other foods besides gluten.  It is not unusual to develop reactions to foods beyond just wheat, rye and barley.

Thanks for your reply.  I've been gluten free for over 20 years and am very careful to avoid any contamination.  I've tracked other suspicious foods and a high tannin (polyphenol) content is what many have in common.  Certain polyphenols have large molecules, and that has led me to believe it is my leaky gut condition that is allowing other large molecules (like gluten) into my blood stream causing insomnia somehow.  For instance, pomegranate juice has a high tannin content with a unique and very large molecule (a polyphenol called punicalagin), and more than 2 ounces keeps me wide awake all night.  Most people have no trouble with pomegranate juice.  I've read in other chat groups that many celiacs have trouble sleeping so I'm just trying to get more information to verify that, or if it's just a problem with my own weird digestive system!  Three and a half days?!  Wow, that must be some kind of record!

[John Spoolman]

On 9/27/2019 at 5:27 PM, cyclinglady said:

If I am running hyper (thyroid), I struggle with insomnia.  When was the last time you had your hormones checked?  I also need to stop drinking coffee by 3:00 pm.  

Thanks for your comment.  I've suspected a thyroid problem and have had it checked many times over the past 20 years, but it always shows normal readings from blood tests.  My family has had a history of thyroid issues, so I still keep an eye on it but it seems to be OK.  I stopped caffeine completely several years ago but the insomnia continues to be a problem.  I suspect my insomnia has something to do with my leaky gut condition - see my answer to previous comment.  As long as I avoid high tannin foods, and there are many more besides tea or red wine, I sleep better.  But I wonder if that's true of other celiacs.  

[CarolF]

Hellish Insomnia and Gluten

I discovered that my gluten-free diet was not really gluten-free , and that was the cause of my  hellish insomnia. I too have gone  over 3 days without sleeping, several times.  I even developed PTSD about bedtime and started planning my funeral it got so bad.

It was at this point realized that I was not always 100% gluten free due to cross contamination.  I had also developed reactions to many other foods, milk, garlic, peppers, grains and several others.  So, I need to be very strict about exactly what I am eating and where it is prepared.  

I have autoimmune thyroid issues and mainly am hypothyroid unless I eat a trigger or have too much stress, then I go on the thyroid rollercoaster ride of being both high and low.  

Hang in there and thank you for sharing!

[GFinDC]

1 hour ago, John Spoolman said:

Thanks for your reply.  I've been gluten free for over 20 years and am very careful to avoid any contamination.  I've tracked other suspicious foods and a high tannin (polyphenol) content is what many have in common.  Certain polyphenols have large molecules, and that has led me to believe it is my leaky gut condition that is allowing other large molecules (like gluten) into my blood stream causing insomnia somehow.  For instance, pomegranate juice has a high tannin content with a unique and very large molecule (a polyphenol called punicalagin), and more than 2 ounces keeps me wide awake all night.  Most people have no trouble with pomegranate juice.  I've read in other chat groups that many celiacs have trouble sleeping so I'm just trying to get more information to verify that, or if it's just a problem with my own weird digestive system!  Three and a half days?!  Wow, that must be some kind of record!

Well, I doubt it's a record, but it sure impressed me!  That happened when I was early in my gluten-free diet, and didn't know I had a problem with dairy.  I ate some cheese and vrooom!  I wasn't even tired for 3 days.   I found a story on the Army experimenting on using casein to keep soldiers alert.  So I guess it can have that effect if it gets in the bloodstream.  I avoid all dairy now.

I suppose you know about Hashimoto's Thyroiditis?  It's an AI thyroid condition that can cause both hyper and hypo thyroid symptoms.  The AI system attacks the thyroid and eventually destroys it.  Hashimoto's is more common in celiac patients.  But it doesn't depend on eating gluten to trigger a Hashimoto's flare.

Insomnia could be a result of your body reacting to some other food you are eating.  An elimination diet might help.

Edited September 29, 2019 by GFinDC

[John Spoolman]

After years of tracking what I eat vs how I sleep, I know if a food has a high tannin content it will cause sleeplessness.  I also have a problem if I eat too much of a food with a high vitamin A or E content.  So that's what I avoid and sleep pretty well when I do.  There are no other foods that I'm aware of that give me trouble.  Thanks for the comments and good luck!

On 9/29/2019 at 10:21 AM, CarolF said:

Hellish Insomnia and Gluten

I discovered that my gluten-free diet was not really gluten-free , and that was the cause of my  hellish insomnia. I too have gone  over 3 days without sleeping, several times.  I even developed PTSD about bedtime and started planning my funeral it got so bad.

It was at this point realized that I was not always 100% gluten free due to cross contamination.  I had also developed reactions to many other foods, milk, garlic, peppers, grains and several others.  So, I need to be very strict about exactly what I am eating and where it is prepared.  

I have autoimmune thyroid issues and mainly am hypothyroid unless I eat a trigger or have too much stress, then I go on the thyroid rollercoaster ride of being both high and low.  

Hang in there and thank you for sharing!

Thanks for your reply and comments!

[Whitepaw]

I find vitamin D will prevent sleep at night, but may make me sleepy or foggy in the day. I have read that calcium acts as a stimulant. 

Watch out for dyes in any foods you eat or meds you take. Blue dye makes me hyper.  I would guess some flavorings or other additives in food may do the same. 

Avoid sugars and chocolate,  if you aren't already. 

If you tolerate Sleepy Time Tea, you might try that. 

A cocktail of chlorpheniramine (old school OTC antihistamine) and 1 Tylenol  (or benadryl and 1 Tylenol) can work wonders. 

[knitty kitty]

John Spoolman,

Tannins bind with the B vitamin called thiamine (B1).  Without thiamine, certain neurotransmitters can not be made to function.  Without these neurotransmitters (some of which help your brain to chill out), you can experience insomnia.  

Chronic thiamine deficiency has been proven to be a factor in hypo and hyperthyroidism, and diabetes. 

Vitamin B6 can keep you awake, as can vitamin B12 and vitamin C.  Vitamin A is light sensitive and will keep you up if taken at night.  Thiamine is needed to digest and process fats, including the fat soluble vitamins like vitamin E.

For better sleep, try magnesium and the amino acid tryptophan taken before bed.  Tryptophan is a form of niacin.  Niacin is needed to heal that leaky gut.  And the Autoimmune (Paleo) Protocol diet will help heal the gut, and weed out food sensitivities, too.

Thiamine is in liver, peas, nuts, beans, and sunflower seeds.

Hope this helps!

 

 

 

[John Spoolman]

Thanks for your reply!  Very interesting comments on thiamine and niacin.  I know too much of foods containing high amounts of the fat soluble vitamins keep me awake, and I've suspected it has something to do with metabolism but don't know why insomnia would be the effect.  Your comments may answer both questions.  I'll have to check my B1 and B6 levels.  I know that a small amount of B12 taken as a supplement keeps me wide awake so I avoid that.  

I take a lot of magnesium and sometimes tryptophan, but none of that will counter a large dose of foods high in tannins, Vitamin A or E.  The thiamine angle is definitely worth checking.  Thanks!

[John Spoolman]

On 10/8/2019 at 5:55 AM, Whitepaw said:

I find vitamin D will prevent sleep at night, but may make me sleepy or foggy in the day. I have read that calcium acts as a stimulant. 

Watch out for dyes in any foods you eat or meds you take. Blue dye makes me hyper.  I would guess some flavorings or other additives in food may do the same. 

Avoid sugars and chocolate,  if you aren't already. 

If you tolerate Sleepy Time Tea, you might try that. 

A cocktail of chlorpheniramine (old school OTC antihistamine) and 1 Tylenol  (or benadryl and 1 Tylenol) can work wonders. 

Thanks for the comments.  I'll check out the various food coloring, though I try to avoid all processed foods.  I seem to have an allergy to chocolate, so avoid that unfortunately.  I had the same results with vitamin D if I took it every day.  Taking 1000 iu daily kept me awake, but taking 5000 iu twice a week works with no problem - go figure!  My doctor said he believed me after he had a second patient with the same vitamin D results.  He eventually told me he'd believe anything given my goofy digestive system!  

[Whitepaw]

Were both doses vit d3? 

[John Spoolman]

I tried 1000 iu of Nature-Made softgels vitamin D3 and after a few days I couldn't sleep.  Then I switched to 5000 iu Nature-Made softgels vitamin D3 twice a week (Mon and Fri) and have had no sleep problems with that even though I went from 7,000 to 10,000 iu a week.

[Whitepaw]

Thank you.  I'll try them. If they keep me awake, I'll find a room to paint, lol!

[KnitterPup]

On 9/27/2019 at 3:52 PM, John Spoolman said:

I was diagnosed with celiac disease in 1998, and over the years have developed serious insomnia problems. ... Any other celiacs have problems with insomnia?

******************

Yes, severe problems. Like you, I cut back on tea and coffee (caffeine). I use a sleep mask - that helped. And the final thing: I stopped eating night shades. The worst offender for me is white potatoes. Night shades contain a substance called glycoalkaloids. Commonly consumed nightshades include white potatoes, tomatoes, peppers, and eggplants.

Glycoalkaloids are a family of chemical compounds derived from alkaloids to which sugar groups are appended. Several are potentially toxic, most notably the poisons commonly found in the plant species Solanum dulcamara and other plants in the genus Solanum, including potato.

If a person has a normal gut - no problem, the glycoalkaloids run through the system. But if one has Leaky Gut (me) the glycoalkaloids can get in to the bloodstream. Glycoalkaloids are neurotoxins. They play havoc with my sleep. I’ve totally stopped eating nightshades.

 

[John Spoolman]

3 hours ago, KnitterPup said:

 

Thanks for your comment.  I also stopped nightshades for about 6 months, but results were inconclusive so I started eating them again.  Now that I've heard this from you I may try omitting them again.  You can have two or three things going on at the same time, so sometimes it's hard to tell what helps and what doesn't.  Here's a very informative blog post you may not have seen with good details on nightshades:  http://www.diagnosisdiet.com/nightshades/  Thanks again!

[Whitepaw]

I spoke with one of my doctors about this. She suggested I start tracking inactive ingredients, as I may be sensitive to one.  I'm wondering if the 2 different Nature Made D's had different inactive ingredients?

Also, I recently met a woman who had sensitivities to meds.  She received genetic testing that revealed a long list of meds to avoid.  

[John Spoolman]

Good advice.  With white pills, I have several inert ingredients that cause sleep problems.  A common one is polyethylene glycol.  Gel caps are usually safer for me so I stick with them whenever possible.  In this case, the two products, Nature Made 1000 IU and 5000 IU, have exactly the same inert ingredients; soybean oil, gelatin, glycerin, water and corn oil.  My metabolism apparently works with 2 times a week vs every day, regardless of the dosage of D3.  But it's wise to check all ingredients because sometimes the same medicine in different dosages has different inert ingredients.  Amazon generally does a good job of displaying the complete  label, including inert ingredients, of almost every supplement they sell.  Do you have any more info on what genetic testing this woman had?

[Whitepaw]

I will see her tomorrow and will ask. She was vague as to what it's called, but maybe I can get a better description. 

[Whitepaw]

Not sure what happened to my original post, but I'm not seeing it here. 

The test is GeneSight low activity  cytochrome p450 2d6 .

When I searched this, it initially looked like it was for antidepressants.  Looking further,  I found info that it applied to other meds as well. Not sure how all inclusive it is.  Cost is $3000-4000 per this woman, but insurance did cover (not sure how much).