Dangerously underweight, Perfect gluten free and insomnia

[SaiP]

Hi guys, 

I have been reading this forum for quite a while now, so I decided to create an account and post my story. 

I've had celiac disease since September 2015 and yet over the years i have still eaten gluten and gradually went from 65kg to 43kg in a 9 year period. I am severely underweight and  and decided to go gluten free.

Age - 34, Male 

Weight - 94lb - 43 kg (look like a skeleton, ribs showing etc)

Height - 170cm

Main symptoms - Severe weight loss + severe brain fog

Allergies - (all life threatening) - eggs, nuts, peas, lentils, sweetcorn and many antibiotics.

I am on a 100% strict gluten free diet (all made at home) i.e. I only eat: 

cooked chicken thighs (with salt+pepper)

White rice

Bananas, apples, avacados 

Brocolli, spinach, beetroot

Tuna

Water

After trying this diet for a week I suddenly developed severe insomnia and can barely get 1-2 hours of sleep, however when I start eating gluten again, my sleep is perfect.

I have seen other threads on this forum from people experiencing the same thing, and other people recommending e.g. B12, magnesium etc.

However, I highly doubt this insomnia is caused by a lack of vitamins+minerals.

I am thinking this insomnia is caused by some kind of gluten widrawal.

I am now eating small amounts of gluten daily to see whether the insomnia will improve and gradually reduce the amount of gluten, so my body gets used to the sudden change and the insomnia will stop

I am fairly confident this approach will work,  but unsure.

The main issue is, I am dangerously underweight now, but sleep is much more important, so I am in a conflicted situation.

Your thoughts?

Thanks!

 

[trents]

Welcome to the forum, @SaiP!

Have you been officially diagnosed with celiac disease or are you self-diagnosed?

What is your average calorie intake per day? Your diet seems to be low in carbohydrates. The only carbohydrate rich food in your list is the white rice. A snack high in simple carbohydrates before retiring for bed at night may help with sleep. Can you do potatoes? Also, tryptophan is reported to help with sleep. Turkey meat is a rich source of tryptophan. 

Also, your diet would seem to be low in fats and oils. Apart from the avocado, there is not much in your diet to supply this vital category of nutrient. 

Your theory about the connection between gluten withdrawal and insomnia seems reasonable. Especially since you have experimented with it. Gluten withdrawal should subside in a few weeks I would think.

[SaiP]

1 hour ago, trents said:

Welcome to the forum, @SaiP!

Have you been officially diagnosed with celiac disease or are you self-diagnosed?

What is your average calorie intake per day? Your diet seems to be low in carbohydrates. The only carbohydrate rich food in your list is the white rice. A snack high in simple carbohydrates before retiring for bed at night may help with sleep. Can you do potatoes? Also, tryptophan is reported to help with sleep. Turkey meat is a rich source of tryptophan. 

Also, your diet would seem to be low in fats and oils. Apart from the avocado, there is not much in your diet to supply this vital category of nutrient. 

Your theory about the connection between gluten withdrawal and insomnia seems reasonable. Especially since you have experimented with it. Gluten withdrawal should subside in a few weeks I would think.

Hi Trents 

Many thanks for the response.

My average intake ranges from 3000 - 4000 calories per day.

In regards to carbohydrates, the majority of my calories are coming from white rice. I eat around 2000+ calories of white rice per day, so definitely not low in carbohydrates.

I was thinking of adding sweet potatoes to the diet. Yes, fats are low, looking into it.

I've seen people complain about the same issue in 3-4 threads, but there hasn't been any solution. I was thinking of eating the same diet as stated above and each day, eat small pieces of toast to see, by how many hours my sleep improves. 

What makes you think gluten widrawal would subside? Is this insomnia happening because maybe I've been a asymptomatic then symptomatic celiac all my life and the body is "shocked"? There seem to be almost no information on gluten widrawal and insomnia anywhere.

 

 

[trents]

Gluten withdrawal is no different than any withdrawal from any other additive substance like opiates or nicotine. In case you aren't aware of it, wheat has additive properties similar to opiates. So, there is a dependency that develops. When you take the additive substance away, the body cries out for it in some way but if you continue to deprive the body of it, the body adjusts and the craving subsides. The insomnia may be how your body is telling you, "I'm used to this and I want it again. I'm upset." But if you stick with resisting the crying out long enough, the body will achieve a new homeostasis that doesn't need wheat.

2000 calories daily from white rice concerns me as white rice is nutritionally bankrupt. Eating that much of it may be robbing vitamins from other things you eat in order for those calories from the rice to be processed.

Edited January 12 by trents

[trents]

My concern about the nutrition robbing potential of so much white rice consumption is coupled with the knowledge that when you remove wheat and other common cereal grain flours from your diet you are likely doing away with considerable vitamin supplementation. In the U.S. at least, common cereal grain flours are required to be fortified with vitamins and minerals. Gluten free alternative flours are not.

[SaiP]

59 minutes ago, trents said:

Gluten withdrawal is no different than any withdrawal from any other additive substance like opiates or nicotine. In case you aren't aware of it, wheat has additive properties similar to opiates. So, there is a dependency that develops. When you take the additive substance away, the body cries out for it in some way but if you continue to deprive the body of it, the body adjusts and the craving subsides. The insomnia may be how your body is telling you, "I'm used to this and I want it again. I'm upset." But if you stick with resisting the crying out long enough, the body will achieve a new homeostasis that doesn't need wheat.

2000 calories daily from white rice concerns me as white rice is nutritionally bankrupt. Eating that much of it may be robbing vitamins from other things you eat in order for those calories from the rice to be processed.

Hi Trents

Thanks again for the response, much appreciated. In regards to gluten withdrawal, since I was only getting 1 hour of sleep per day, there is no chance I could keep the 100% gluten free diet going, as I would have ended up in the hospital pretty soon due to lack of sleep.

So, what I'm doing at the moment is eating toast and reducing the amount and tracking how my sleep improves. I think this is the only thing I could really do. Are you aware of any other cases similar to this? I can barely find any even when googling.

In terms of white rice, I understand there's hardly any nutrients in eating that much of it, but I'm only doing it to make sure I'm eating as much calories as I can.

 

[trents]

No, I have not before encountered reports of insomnia connected with gluten withdrawal.

You did not answer a question from my original post. Are you officially diagnosed or self-diagnosed with celiac disease? Were you diagnosed with just antibody testing or both antibody testing and endoscopy/biopsy?

[SaiP]

8 minutes ago, trents said:

No, I have not before encountered reports of insomnia connected with gluten withdrawal.

You did not answer a question from my original post. Are you officially diagnosed or self-diagnosed with celiac disease? Were you diagnosed with just antibody testing or both antibody testing and endoscopy/biopsy?

Hi, 

Apologies, I'm self diagnosed with celiac disease. I have had several blood tests done throughout the years for celiac, thyroid, crp etc (while being on a gluten diet throughout) and they all came back negative. I was scheduled for an endoscopy, however I have a huge phobia of it, so I declined.

I mainly self diagnosed, due to while being on a strict gluten free diet on and off throughout the years, many symptoms greatly improve I.e my skin, brain fog, more alert and feel better.

[SaiP]

And stool change to almost solid as oppose to diarrhea like

[trents]

3 minutes ago, SaiP said:

And stool change to almost solid as oppose to diarrhea like

Do you mean that your stools firmed up when you began to cut gluten from your diet?

[SaiP]

26 minutes ago, trents said:

Do you mean that your stools firmed up when you began to cut gluten from your diet?

Hi, yes.

Much more solid and firm, as opposite to diarrhea like when on gluten.

[trents]

So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease.

NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both.

What muddies this whole question are two things:

1. Lack of official diagnostic data that indicates celiac disease.

2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet.

What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any? I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.

Edited January 13 by trents

[eKatherine]

On 1/12/2025 at 5:15 AM, SaiP said:

Hi guys, 

I have been reading this forum for quite a while now, so I decided to create an account and post my story. 

I've had celiac disease since September 2015 and yet over the years i have still eaten gluten and gradually went from 65kg to 43kg in a 9 year period. I am severely underweight and  and decided to go gluten free.

Age - 34, Male 

Weight - 94lb - 43 kg (look like a skeleton, ribs showing etc)

Height - 170cm

Main symptoms - Severe weight loss + severe brain fog

Allergies - (all life threatening) - eggs, nuts, peas, lentils, sweetcorn and many antibiotics.

I am on a 100% strict gluten free diet (all made at home) i.e. I only eat: 

cooked chicken thighs (with salt+pepper)

White rice

Bananas, apples, avacados 

Brocolli, spinach, beetroot

Tuna

Water

After trying this diet for a week I suddenly developed severe insomnia and can barely get 1-2 hours of sleep, however when I start eating gluten again, my sleep is perfect.

I have seen other threads on this forum from people experiencing the same thing, and other people recommending e.g. B12, magnesium etc.

However, I highly doubt this insomnia is caused by a lack of vitamins+minerals.

I am thinking this insomnia is caused by some kind of gluten widrawal.

I am now eating small amounts of gluten daily to see whether the insomnia will improve and gradually reduce the amount of gluten, so my body gets used to the sudden change and the insomnia will stop

I am fairly confident this approach will work,  but unsure.

The main issue is, I am dangerously underweight now, but sleep is much more important, so I am in a conflicted situation.

Your thoughts?

Thanks!

 

I suggest you look at your calorie intake. If you're not eating enough calories, your body will signal you to wake up and forage for more food. You need to be eating more calories than a healthy person of normal weight in order to gain weight. Also, your diet is extremely low in fat unless you are eating chicken thighs with the skin on, which I would recommend. Also be sure to add butter (real butter) to your vegetables.

You can measure and record everything you eat, then look up and calculate what your protein/carb/fat intake is. Or just eat more chicken rather than filling up on vegetables and fruit.

[knitty kitty]

@SaiP,

I noticed that you are eating foods that are high in histamine.  Bananas, avocados, spinach, gluten, and tuna are high histamine foods or are histamine liberators.  Histamine is released by mast cells in the body as part of the autoimmune reaction to gluten.  High histamine foods add to that histamine burden, making clearing histamine difficult.   

Histamine is a helpful neurotransmitter, causing alertness.  We wake after sleep because our body produces histamine.  BUT, excess histamine causes insomnia.  

We need vitamins and minerals, like Thiamine, Pyridoxine, Cobalamine, Vitamin C, and magnessium, to help our body break down and clear out histamine.  

We need Thiamine and the other B vitamins to turn carbohydrates, like white rice, protein and fats into energy and fuel for the body.  The more carbohydrates you eat, the more thiamine is needed above normal.  More thiamine is needed when physically sick, or emotionally stressed.  Losing weight until skin and bones is a symptom of Thiamine deficiency.

White rice is stripped of nutrients like Thiamine, when the germ is removed to make it white.  Vitamins added to enriched rice can be lost if the rice is washed.  If you are increasing your rice consumption, you need to increase your thiamine.  The form Benfotiamine has been shown to promote intestinal healing.

Healthy fats like olive oil should be included in the diet.  Our body likes to use healthy fats as fuel.  

Do look into a low histamine gluten free diet.

[trents]

@SaiP, why are you using white rice in instead of whole grain rice or even brown rice?

[trents]

knitty kitty makes a good point. Avocados are high in histamines. So are bananas. Both also trigger histamine production in the body when consumed so there's a double whammy with those two foods for those struggling with histamine intolerance/MCAS

[SaiP]

Hi guys.

Apologies for the late reply. Many many thanks for the replies.

Hi - I am eating both white rice and wholegrain brown rice, due to it being very difficult to just eat brown rice.

In regards to histamine foods - I am taking 10mg loratadine to combat this issue, however haven't seen any positive results as of yet.

I have noticed if I am on a strict gluten free diet for around 1 week, the insomnia instantly pops up, and I have to eat around half a slice of bread for it to stop. I am trying to lower this amount, however the insomnia is still present. I have searched these forums and the internet but there seem to be no solution to this issue. I thought if I gradually reduce from half a slice and a little less, the issue will be resolved. However this is not the case.

[trents]

Earlier, you mentioned the possibility of adding in sweet potatoes. Have you tried that?

Have you tried sourdough bread? Some people with celiac disease claim they can eat sourdough without a gluten reaction. The fermentation process alters the protein somewhat.

[knitty kitty]

@SaiP,

Insomnia is listed as one of the side effects of Loratadine.  

Niacin B3 in the form Tryptophan, Pyridoxine B 6, Folate B 9, Cobalamine B12, Magnesium, and Thiamine B 1 are needed to produce the sleep hormone melatonin.  Insomnia can also be caused by low Vitamin D and low Vitamin A.  

A strict gluten free diet can be low in essential  vitamins.   Gluten containing products are required to replace vitamins lost in processing and milling.  Gluten free processed foods are not required to have vitamins added. 

White rice is not a good source of B vitamins.  Brown rice is little better.  Exposure to light (even grocery store lights) and heat (during transportation) can destroy B vitamins.  

B vitamins are easily lost in urine and diarrhea because they are water soluble.  If you have had diarrhea longer than two weeks, you are probably low in B vitamins.  Fat based vitamins, like Vitamins D and A, can be low due to fat malabsorption in Celiac disease, too.  

Damaged villa in Celiac Disease do not absorb B vitamins and fat based vitamins and minerals well.  Supplementing with essential nutrients while villi heal boosts the ability to absorb essential vitamins and minerals. 

Vitamins are stored and utilized inside cells.  Blood levels are not accurate measurements of vitamin deficiencies.  You can have normal blood levels while having deficiencies inside cells.  The brain orders cells to release their stores so the brain and heart can keep functioning.  This results in normal blood levels, but vitamin deficits inside cells.  

Your indulgence in a little bit of bread is providing some, but insufficient amounts, of vitamins needed to make sleep hormone melatonin while keeping your inflammation and histamine production high.  

In addition to a B Complex, I took 1000 mg of tryptophan before bed to correct my insomnia caused by high histamine levels.  Correcting my Vitamin D level to between 75-100 nmol/ml helped as well.  Also Passion flower extract is helpful in falling asleep quickly.  

Please stop eating gluten bread as this will keep your autoimmune response triggering and your antibody levels won't go down and your histamine levels will stay up as well.  

Celiac is a marathon, not a sprint. 

P.S. I wanted to reiterate that insomnia and weight loss are symptoms of Thiamine deficiency.  Benfotiamine is a form of thiamine that promotes intestinal healing.  Thiamine is water soluble and nontoxic even in high doses.  High doses are needed to correct thiamine deficiency. All mitochondria in cells utilize thiamine.  The World Health Organization says to take 500 - 1000 mg per day of thiamine and look for health improvement.  Diets that are high in carbohydrates like rice and gluten require more thiamine.  For every 1000 calories from carbohydrates, we need 500 mg more thiamine.  Thiamine is found in meat.  Few veggies contain thiamine.

Can you rise from a squat without assistance?  This is the field test for thiamine deficiency used by WHO.  If you cannot rise easily from a squat you may be thiamine deficient.

Edited January 25 by knitty kitty
Typo correction, added Post Script