Help! Struggling with lack of appetite, insomnia, and nausea! Can anyone relate?

[Sparkles01]

Hey there! Before I get into the details, I just wanted to start off by saying how grateful I am to have come across this website. It is so comforting to know that there’s a community of people out there who understand the difficulties of celiac disease first hand. So thank you all for sharing your experiences.

Below I’ve listed three main issues I’ve started seeing and I am seeking some advice. For context: I’ve been following an 100% gluten free diet for about 6 months now, but just started noticing these symptoms within the last couple of weeks or so. I’m not sure if anyone else has experienced these problems too but just thought it wouldn’t hurt to reach out. 

LACK OF APPETITE: Has anyone else experienced a lack of appetite after following a strict gluten free diet? I’ve personally always had a great relationship with food and eating regularly. But ever since following a gluten free diet, I haven’t been eating much, or anything at all for that matter. Sometimes I won’t even realize that I haven’t eaten anything by dinner time. I genuinely don’t feel hungry. Can others relate? Any tips? 

INSOMNIA: It just these last couple of weeks where I have been experiencing the worst insomnia. I can’t sleep at all anymore. I’m lucky if I fall asleep around 2-3 o’clock. It’s been so incredibly frustrating for me to deal with. I just feel so lost with this. I’ve tried googling and to my understanding, no gluten in my diet makes it harder to get tired? Idk. Feel free to correct me on that one. I’ve tried sleeping pills but I really want to avoid relying on them if possible. I have a vitamin b-12 deficiency, and have read that others have found that taking b-12 before bed has improved sleep. Im willing to try anything at this point, so I’ll see if it works. Haha as I’m writing this at 2:30 am.

NAUSEA: I’ve noticed as I’m lying down to sleep I feel slightly nauseous. I just have to sit up which makes it harder to sleep. Disclaimer, i haven’t actually thrown up yet. It’s weird, it doesn’t reach or get to that point really, but I’ll still feel nauseous. Mainly at night but sometimes during the day. Has anyone else experienced this? If you have any advice please share. 

[knitty kitty]

Welcome to the forum, @Sparkles01!

Those symptoms, loss of appetite, nausea and insomnia, were symptoms I've had.  My symptoms were caused by malabsorption due to CeD damage in the small intestine which resulted in vitamin and mineral deficiencies.

Anorexia (loss of appetite) is a symptom of a Thiamine deficiency disorder.  Thiamine Vitamin B 1 becomes depleted quickly (weeks or even days) if we're not absorbing sufficient amounts.  Our symptoms can wax and wane mysteriously because our daily diet may vary in the amount of Thiamine it contains at each meal.  Conversely, an insatiable appetite is also a symptom of Thiamine deficiency disorder and can lead to high calorie malnutrition resulting in obesity as carbohydrates are stored as fat since there's insufficient thiamine to process the carbohydrates into energy.

Nausea is another symptom of Thiamine deficiency disorder.  Thiamine supplementation has been used to treat nausea in pregnancy.  The demand for Thiamine increases dramatically in pregnancy and also during illness, emotional stress, and physical stress, especially if an athlete or working outside.  Running to the bathroom, while worrying if you'll make it before having an accident, covers all those bases.  

Similarly, malabsorption affects other vitamins and minerals as well.

Insomnia can be caused by high levels of histamine in the brain.  Histamine is released as part of the inflammation process in our autoimmune response.  Vitamin B12 Cobalamine helps to break down histamine.  Perhaps that's why people find insomnia relief after taking it at night.  Thiamine along with Pyridoxine B 6 are also needed to breakdown histamine.  

Our bodies can make histamine.  It's a useful neurotransmitter that causes alertness.  Certain foods contain high levels of histamine or can trigger our bodies to release histamine.  The caffeine in that cup of coffee in the morning stimulates a histamine release that gets your eyes open.  Processed meats like sausages and luncheon meats, as well as pickled and fermented foods contain high levels of histamine.  If we remove those foods temporarily, our bodies can deal with lowering histamine levels and reducing inflammation more efficiently.  

I found a low histamine Paleo diet (the Autoimmune Protocol Diet) very helpful in reducing the inflammation and histamine levels.  I also supplemented with the essential vitamins and minerals that the human body needs to function properly and heal.  

New Celiacs need to be checked for nutritional deficiencies as part of proper follow up care.  Unfortunately, most blood tests aren't an accurate measurement of vitamins stored inside cells where they are used.  Blood tests can reflect how much of a vitamin has been absorbed from a meal eaten in the previous twenty-four to forty-eight hours.  Blood tests can reflect vitamin supplements recently consumed, which can give false high levels or hide a deficiency.  Blood tests for nutritional deficiencies should be done before starting supplementation.  

Talk to your doctor and nutritionist about supplementing with vitamins and minerals.  Taking B Complex, which includes all eight essential B vitamins, is beneficial.  Vitamin D regulates the immune system, telling it not to produce so much histamine. Magnesium, iron and zinc are minerals frequently found to be low in people with CeD.  High dose Thiamine is beneficial.  Thiamine in the form Benfotiamine has been shown in scientific studies to promote intestinal healing and improvement in neurological symptoms.

Gluten containing products are required to be enriched or fortified with vitamins and minerals.  Gluten free facsimile foods are not.  If you replace gluten containing foods with their gluten free counterparts, you may not be receiving sufficient nutrients to process them into energy for the body.  You need to buy your own vitamins since gluten free processed foods rarely add them.

Hope this helps!

P.S.  the World Health Organization says the best way to test for Thiamine deficiency is to give 500 mg or more of Thiamine for several days and look for improvement of symptoms.   (I had improvement within an hour.)  Thiamine should then be continued for several months.  Since Thiamine is harmless, nontoxic and safe even at high doses, there's no harm in trying to rule it out. 

Edited January 13, 2024 by knitty kitty
Typo correction, add p.s.

[Scott Adams]

The first question I have would be is you diet 100% gluten-free? If you eat in restaurants, probably not.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Wheatwacked]

On 1/13/2024 at 4:42 AM, Sparkles01 said:

Sometimes I won’t even realize that I haven’t eaten anything by dinner time. I genuinely don’t feel hungry. Can others relate? Any tips? 

Start a food log. 

You can track nutrient intake with data from https://fdc.nal.usda.gov/ , the USDA FoodData Central

Since most of the blood tests only measure blood levels the only accurate well to tell where you are short is by tracking your intake.  here is a sample of my spreadsheet, Using the SR28 database.   http://nutrientlog.doodlesnotes.net/

     For nausea or discomfort try Original Alka Seltzer for quick relief but increasing your Choline intake in addition to Thiamine should help.  Eggs, beef, liver or nutritional supplements like choline or phosphatidyl choline.

Choline Fact Sheet for Health Professionals 

I was diagnosed with Prostate Hypertrophy (swollen prostate) when I was 21.  I lived with it until I started gluten free at 63.  It improved significantly in a few months and is entirely normal now.  I don't know if it was the gluten or the folic acid.  Folic Acid (NOT Folate) increases the risk of prostate cancer in Clinical Trials. 

Choline has numerous functions including controlling homocysteine which it shares with Folate, B12, B6 and Taurine.  When your intake of Folate decreases because you are not eating foods with Folic Acid added your Choline recquirement goes up, causing bile problems.  Choline salts are the main salts in bile Less bile salts cause the bile to drain poorly into the small intestine where it is needed to digest fats.

On 1/13/2024 at 4:42 AM, Sparkles01 said:

but just started noticing these symptoms within the last couple of weeks or so.

That fits with what knitty kitty mentioned:  "Gluten containing products are required to be enriched or fortified with vitamins and minerals.  Gluten free facsimile foods are not."  

Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial  "Among the 643 men who were randomly assigned to placebo or supplementation with folic acid, the estimated probability of being diagnosed with prostate cancer over a 10-year period was 9.7% in the folic acid group and 3.3% in the placebo group . In contrast, baseline dietary folate intake and plasma folate in nonmultivitamin users were inversely associated with risk of prostate cancer"

  Alka Seltzer is acetlysalycic acid (aspirin) with Sodium Bicarbonate so acts both as an antacid and analgesic.  Much preferable to Proton pump inhibitors because it is short term and PPI's are not analgesic.  I normally only sleep less than 3 hours before something wakes me, but nights that I take alka seltzer at bedtime (rarely at this point) I will sleep longer.  

     Strangely, vitamin B11 is salicylic acid, but somewhere along the way someone started saying that B11 is folate.  

Quote

The full list of Vitamin B originally consisted of 12 vitamins, so no number was skipped… B4 (adenine), B8 (inositol), B10 (para-aminobenzoic acid, or PABA), and B11 (salicylic acid) were part of the list. These substances are no longer labeled as vitamins and these days are not part of the B complex. It does not mean these nutrients are not important, but they no longer fit the official definition of a vitamin. Today, the Vitamin B Complex consists of 8 vitamins, including, B1 (thiamine), B2 (riboflavin), B3 (niacin), B5 (Pantothenic acid), B6 (pyridoxine), B7 (biotin), B9 (folate) and B12 (cobalamin). The synthetic form of folate is folic acid, which converts to folate in the body. Because folic acid is more easily absorbed by the body, it is the form most used in supplements and fortified foods, so Vitamin B9 is folic acid.   Which vitamin B is folic acid

This post started by Scott may give you more ideas. 

 

[Always-Hungry-Kate]

My apologies for being a little late to the party, here, but I had to chime in (finally) after struggling with unrelenting insomnia for almost 2 months, now.  Although I believe the brunt of it was caused by a monoclonal-antibody, anabolic osteoporosis drug I was on until January 10 (2024) -- when I stopped due to the severe side effects it caused -- I am still struggling with it and am trying to find non-drug-related solutions for it. 
I have been working with a psychiatric health professional (an APN) for over 2 weeks now and -- being that I was just diagnosed with Celiac in October of 2023, I may have developed a severe sensitivity to CAFFEINE (!?!). 

Normally, I would not have believed that I -- a coffee afficionado since the age of 16 -- after decades of enjoying coffee, chocolate, tea, etc., my new gluten-free diet would have made my intestinal tract super-sensitive to caffeine like this.  In mid-January, I started on a prescription for the off-label use for insomnia.  It's not an actual sleeping pill.  It's something else given to psychiatric patients (oh, great), but it's working for me, now.  I have been prescribed different ones that would "knock me out", since that is what I needed.  The typical "sleeping pills" were NOT doing that for me.  

FINALLY, this past week, the APN suggested, "NO CAFFEINE WHATSOEVER until I talk to you again (this week).  Well, I must say that since I have not had any of my (wonderful, delicious) coffee (including all decaf), chocolate, and teas (with & without caffeine), I think there may be something to this. 

That is, the front of my head -- when I try to nap or actually SLEEP -- is finally starting to "calm down", now.  First, it used to be my entire head/brain felt like it was "buzzing" with electricity -- especially at night, while trying to sleep.  No racing thoughts, no fears, no problems, just "buzzing" to the point where it would not shut-off.  Since I stopped eating/drinking the caffeinated stuff, now it's just the front of my head that is slightly "over-energized" to the point where it won't let me sleep WELL.  I think in time, I will be able to get off the prescription sleep meds, which I really want to do NOW. 

If anyone else has experienced over-sensitivity to anything that has given them insomnia, please share your thoughts and experiences; it would really help people like me understand what is happening.