Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group EXTREMELY sleepy after eating

Hello!

My name is Artur. I was diagnosed with AS in November 2011, when after a bout of severe hip pain and iritis the eye doctor suggested that I see a rheumatologist. My grandfather has AS too, although for him it has apparently "burnt out" by this time, with less than pleasant consequences, of course (back completely fused, he is unable to turn his head, but otherwise healthy and I am very happy for that). Considering the family history and the fact that I was determined to be HLA-B27 positive, the doc did not have a difficult time in making the diagnosis.

Up to this point, I have had symptoms that could be considered "mild", I suppose. Mainly some hip pain, which has made jogging painful, but not much else. This month the lower back pain started creeping in at night, waking me up. A couple of weeks ago I decided to get myself together and go on the no-starch diet, which has given a noticeable reduction in pain after being very strict with myself for about two weeks.

So the typical symptoms of AS that I am experiencing are not by themselves that debilitating. However, there is a huge problem which has made my life a living hell for about a year or more already, interfering severely with work and life in general. The issue is this: I get extremely, I mean extremely tired after eating. If I have a full lunch at work, in an hour or two I am guaranteed to be completely out of it. It feels like being drugged with some sort of soporific, the yearning to sleep is so immense that productiveness reduces to 0%. There is also some muscle weakness. For a while I thought that it was because I wasn't sleeping soundly at night (I've had some crazy dreams, sleep paralysis, waking in the middle of the night etc), so I got a sleep study done. When I described my symptoms to the sleep specialist, she said that it sounds like narcolepsy (!), but the results came back completely normal.

It's now so bad that I am severely worried whether I can satisfactorily do my job at the office (I hold a stressful occupation in the law field). For a while I just fasted (that's when I discovered that fasting, at least for me, takes away much of the pain of AS) and kept myself awake on coffee, which isn't exactly healthy for someone suffering of a chronic disease.

So my problem breaks down to this:
- EXTREMELY, almost indescribably and definitely abnormally tired after eating food
- crash onset about an hour from eating, peak at two hours, then recovery to "human" energy levels in another hour or two
- have tested blood sugar both before as well as an hour and two hours after eating, all normal
- no correlation between sleepiness and amount or type of food eaten (any food makes me totally crash, I have crashed after drinking a small bottle of carrot juice; smaller amounts only seem to reduce the length of the crash, but this also may vary)
- I also suffer from heartburn, I wonder if this may be related somehow;
- paresthesia is common: I get tingling and prickling sensations all over the body sometimes, tiny muscle fasciculations
- blood tests for deficiencies (incl. iron, B12) done recently, all normal.

Anyway, I am at a loss at what the problem could be. Doctors I have been to really do not understand the severity of the fatigue. I am a bit worried, because at this rate I won't be able to do what is expected of me, or at least to the extent expected from me at work. And they also do not hand out disability pensions for "food coma", at least not where I live (a tiny European country, Estonia). If anyone has any experience with what I am describing, or any suggestions on how to overcome this blight, all is greatly appreciated. Thanks!

That problem is SO familiar to me - it was exactly what I went through pre-coeliac diagnosis. I had it explained to me as a leaky gut (from coeliac damage, that for me had gone as far as severe villous atrophy) that allowed particularly protein breakdown products to leach into the bloodstream before they were completely broken down. Normally it would be digested down to amino acid level before getting into your bloodstream. This is a very non-technical understanding, but I'll carry on. So, with these slightly bigger molecules getting into my bloodstream, apparently some of them (especially from protein and from dairy products) do something with bits of your brain (serotonin receptors?) that give the impact of a major sedative.

The stupid thing with my coeliac brain fog, was that I would have energy as long as I kept going. Eg, I could have something to eat, and immediately walk several miles, but then as soon as I stopped or sat down I'd absolutely crash and couldn't stay awake. It got so bad, and was particular bad after protein meals, that I ended up really limiting protein for a few weeks (while waiting for the endoscopy to confirm coeliac disease) because protein particularly knocked me out.

The paraesthesia could also be part of undiagnosed coeliac neuropathy - there are an awful lot of neuro problems that have been associated with gluten intolerance.

The only thing that surprises me a bit is that your iron and B12 are normal, because mine were very low, and thats quite common. You could ask for folate to be checked, because I think thats more specific for malabsorption problems (if you are eating a normal diet with plenty of fruit and veg). But, I'd strongly suggest whatever those nutrient blood tests show, getting coeliac tested - make sure they do the anti-endomysial antibodies test, not the anti-gliaden (which isn't reliable, specially the deamidated test they use in the US), and if it does come up negative, then the next step is to check for IgA deficiency (which can cause false negatives, in which case they would repeat the anti-EMA using IgM or IgG). An endoscopy would also be useful, specifically looking for damage in the upper small intestine (jejunum). Seeing a gastroenterologist would be really helpful.

And the good news is - following my coeliac diagnosis, and going onto a strict gluten free diet, I couldn't believe how much energy I had, or how much better it made my gut feel, even though gut problems weren't what I was complaining most about. Of course for me that has all gone out the wall now with major fatigue from badly controlled AS.

some interesting links:
http://glutendude.com/celiac/celiac-disease-and-brain-fog/
http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Celiac-Disease-Brain-Fog.htm
http://www.mindbodygreen.com/0-7482/10-signs-youre-gluten-intolerant.html

Some of those just talk about brain fog, and don't go as far as that wipe out tiredness, but be assured, many of us with coeliac disease know exactly what you are talking about there. As someone with coeliac disease, I'd very strongly say DON'T remove gluten from your diet until you have been fully tested medically. Doing that makes it so much harder to get a formal diagnosis, and you really need that formal diagnosis for two reasons - to get the medical folk talking you seriously, and to give you the incentive to really stick with a gluten free diet and not cheat at all.

Hi Salianboy,

this exact issue that you are complaining about has happened to me already 3 times in the past 2 weeks, every time following a good proteic lunch. The sleepiness is indeed extreme, especially that I know it's not normal for me.

So, I'd be grateful as well to anybody that had more explanations as to why this is happening as well as tips on how to get rid of/deal with it.

thanks!

Thanks for the information cemc!

What you describe is very similar to what I am experiencing: fatigue that manifests itself primarily at rest, which means that I can stay physically active, but the moment I rest, I also crash.

What is strange is that I complained of fatigue to my rheumatologist and mentioned the possibility of coeliac disease. He quickly dismissed my concerns stating something along the lines of: "Coeliac disease manifests itself entirely differently."

You stated that eating protein might be a problem? But what can you eat at all in this case to normalize digestion? And how long does it take to normalize?

I'll definitely follow your suggestion of getting an appointment with the gastroenterologist. This has been long overdue.

Hello Salianboy,

Welcome to Kickas, glad you found us.

Here are my questions...
- Do you also notice it after eating in morning or evening?
- What are you eating at lunch? Does it differ from morning or evening?
- Did this improve or get worse with going No Starch?
- Are you taking any medications with side effect of sleepiness?
- Do you have any food allergies?
- How do you sleep at night?

Prior to going NSD... I had similar issue for a while when I lived/worked in Florida. An hour after lunch I was extremely tired... but I ate carb heavy lunch at the time. I would nearly fall asleep at my desk.

Switching to NSD I never get tired after eating, so found it interesting you have this issue.

Best to you,

Tim

Dotyisle,

1. Intense fatigue sets in after any kind of meal. Although it feels as if it's worst at lunchtime.

2. Lunch does not differ much from morning or evening. I usually eat a load of greens and non-starchy vegetables with a hearty serving of meat on the side.

3. This has not worsened with going low starch. I also have not noticed any particular improvement, then again I have only been fully on the diet for two weeks.

4. A blood test showed that I have a slight allergy to egg whites, so I do try to avoid eating eggs. Other allergies I am not aware of.

5. I have nocturnal awakenings. Not only when there is back pain, but also when the pain is under control. Just wake up, usually go to the bathroom and then get back to sleep. Other than that, I sleep fine and am able to sleep long. Sleep study showed healthy sleep cycles. Even a long prior night's sleep does not seem to improve the fatigue.

The protein definitely made for worse symptoms, but it wasn't a cause - if it is coelic you need to get that diagnosed then a gluten free diet should fix it.

Hi and nice to meet you!
Great post with a challenging question and I hope we can in some way help you figure this out so you will feel well soon.
First impression: this SO sounds like a blood sugar drop. A simple test will NOT diagnose this. Even a 5 hour GTT (glucose tolerance test) does not always diagnose low blood sugar aka reactive or functional hypoglycemia. Why? Because it is the swiftness of the drops that release the adrenaline and so forth, not always how low you go. So, even with a 5 hr GTT, your levels may be in the normal limits, but what won't show up is the swift drop. The adrenaline and stuff that gets released makes one feel completely awful! That's what happens.
When my blood sugar drops I feel horribly fatigued, shaky, tired, my heart pounds, and I think I might faint. It's awful. I feel disabled and utterly incapable for anything! The tiredness is overwhelming. So, I have to eat very carefully. And manage stress! I've learned and I'm still learning how to manage it. While there are some awesome endocrinologists out there who get this and can help, for the most part learning from other people is the best, like with AS!
Nightmares and poor sleep is a symptom of hypoglycemia.
Do you eat breakfast right away when you wake up, and does your breakfast contain both plenty of protein and complex carbohydrates, in your case, greens and so on? The breakfast first thing is huge.
It sounds like you are not eating anything with gluten anyway but I would definitely go through what you eat and drink and make sure there's no gluten. Celiac and gluten sensitivities present in all kinds of ways!
Me? Hypoglycemic, gluten intolerant and spondy, yep! : )
Best of health to you, new friend!

I am so sorry you are experiencing this.

I was thinking exactly what Jan posted. Our 21 year old grand daughter has that kind of symptoms and the pounding heart, vision impaired, the terrible fatigue all from Hypoglycemia. The dr. put her on a med to regulate it and she is on a high protein/no carb diet (maximum for now of 10 grams daily). She is already feeling better. She had to have the 5 hr. GTT. She missed a semester of school last year while the pcp tried to figure out what was wrong with her. She saw all kinds of drs. before she finally got to an "awesome endocrinologist" who is helping her a lot.

Hope you get some answers and feel better soon.

Blessings.