Eight months of eating strict gluten-free paleo after a celiac disease diagnosis, I still don't feel back to normal. Most days it feels like I'm living in molasses and my brain doesn't function well enough for my work. I do have days where I feel like normal, just enough to remind me that this fatigue thing is out of my norm, but then I sink back down into the fatigue. I had a followup appointment with my GP and she set me up with a gastroenterologist (for an endoscopy) and immunologist (for allergy testing), but in the meantime, I'd like to see if I can come up with some leads / suggestions / more info to give these specialists, because right now I feel like I have nothing for them. All I know is that I feel bad.
I've had TSH tested 3 times (2.2, 1.8, and 2.15 mIU/L), all within the normal range. I had Free T4 tested (1.2 ng/dL), also normal. And I just got results for TPO and TBG antibodies to check for Hashimoto's thyroiditis, and both were negative (under 20 IU/ml for anti-TBG, and 12 IU/ml for anti-TPO). So it seems highly unlikely that something is wrong with my thyroid.
I've twice had my blood nutrient panels done, and all the nutrients tested were in normal ranges, including ferritin. Sodium and potassium were low, but still in the normal range, and everything else was smack dab in the middle of their ranges.
So, I'm at a loss for what could be wrong. I ordered some cortisol saliva tests but haven't gotten those results back yet. Edit: cortisol levels were spot on where they ought to be.
What other causes of mental and physical fatigue are there?
What kinds of things should I ask/tell my gastroenterologist and immunologist?
I went of hormonal birth control 8 months ago after being on it for 10 years. My cycle quickly adjusted to normal, but I do have bad cramps and pre-menstrual breast tenderness (which I didn't have as a teenager). Those have gone away since I started eating more seaweed and brazil nuts.
I typically get 8-9 hours of sleep a night, and I was using blackout curtains until the weather turned warm. In order to keep the room cool enough, until we put in the window AC units, we have the curtains open for airflow. So this past week I've gotten about 7 hours of sleep a night. I haven't adjusted too well to the time change for daylight savings time, but I'm lucky enough to have a job with flexible hours so I have just been going to work a couple hours later.
As for food, I was doing lowish carb paleo (per day 1 lb of fatty grassfed ground beef, half a cup of sauerkraut, a bunch of kale, an onion, a can of salmon, a couple cups of spinach and a tablespoon or two of coconut oil, and maybe half a cup of sweet or white potato, plus liver and bone broth once a week or so), but then I upped the carbs, selenium, and iodine and started to feel much better. Lately I've been eating a lot more fish (from a fish CSA), fish stock, chicken meat, chicken stock, and chicken liver, beef and goat stock, beef and lamb kidneys and livers, oranges, potatoes, seaweed, and brazil nuts. I have been eating more variety lately, but a typical day is 4 oz leftover salmon with 3 eggs and spirulina for breakfast, an orange, a grapefruit, and 4 brazil nuts for lunch, and then grilled haddock (plus the eyes!) and a potato for dinner. Or I might have ground beef and kale for breakfast, an orange, a banana, and 3-4 brazil nuts for lunch, and then seaweed soup with dulse, eggs, and shrimp cooked in fish stock, for dinner. I often have a natural calm before bed or an epsom salt bath, and about a week ago I started supplementing with vitamin D. Maybe once or twice a week I'll have some green or black tea. And I have cacao nibs or dark chocolate a few times a week, too.
I'm 5'3'' and weigh 160 lbs. When I first went paleo I went down to 150lbs, but then my weight crept back up. I've been too tired for exercise: I tried taking up rock climbing but got so tired it seemed dangerous. I do a lot of walking, over a dozen miles a week. And lately I've been doing a lot of sprinting (about 2 blocks, once or twice a day) to catch the bus. I'd like to get back into weightlifting, but I just don't have the energy/stamina lately.
Edit: B-vitamin bloodwork results
I got my bloodtest results for serum levels of MMA, folate, and B12.
MMA: 138 nmol/L
Folate: 16.8 ng/mL
B12: 603 pg/mL
At this point (and bolstered by VB's post) I'm going to contact a TCM doc.
I'll get results back from free T3 (blood spot) and hormone panel (saliva) in a couple weeks.
my TSH was about the same as yours and I was hypothyroid. I take dessicated thyroid and couldn't live without it. I would suggest visiting a naturopath. They look at optimal ranges not "normal" ranges that are based on unhealthy people. It's often out of pocket but your health is worth it. I went thru many doctors telling me I was normal but I was very sick with lead and mercury poisoning, estrogen dominance from bc pills, adrenal fatigue, vitamin d deficiency, anemia, etc etc. you sound a lot like me. Don't worry stick w it you will get better. It took me 3 years but I'm almost back to normal minus the SAD. I don't think I would have recovered without going paleo.
Here is a list of things that could lead to physical and mental fatigue (of varying explanatory power), based on the avenues my doctors and I have explored.
Surprisingly, none of my doctors have suggested vitamin B deficiencies.
There is a couple of things you say that leads me to think you might have a thyroid problem:
This would be a typical sign that you might be hypothyroid, possibly a T4 to T3 conversion problem in the liver.
2 "I've had TSH tested 3 times (2.2, 1.8, and 2.15 mIU/L), all within the normal range. I had Free T4 tested (1.2 ng/dL), also normal."
The TSH, while in normal range, is still a bit high. Under 1 would be better. But the most important test is missing - free T3. You can have normal T4, but low T3.
If you do have a thyroid problem, you should probably take it easy with goitrogenic foods for a while. You said you were eating "half a cup of sauerkraut, a bunch of kale (...)" - this was probably not helping if you have/had a thyroid problem. This podcast at 29:36 min is helpful:
Most days it feels like I'm living in molasses and my brain doesn't function well enough for my work. I do have days where I feel like normal, just enough to remind me that this fatigue thing is out of my norm, but then I sink back down into the fatigue.
I have to say, I think your doc is missing something, and it's not your thyroid.
You said that your ferritin level was "normal". What does that mean, exactly? 300 µg/L? 100 µg/L? 10 µg/L? The reference range on this varies widely by country and laboratory. (I've seen the bottom end be 20 µg/L. That may be "normal" in the sense that it falls within 2 standard deviations of the mean, but it is unlikely to make someone feel very good.)
Did your doctor measure serum iron and either TIBC (total iron binding capacity) or transferrin?
Do the "good days" correlate at all with what you eat?
Have you tried keeping a food diary?
Last question: Does your condition change throughout the day, and if so, does it do so consistently from day to day?
Ferritin levels are not the last word on iron, because ferritin is an acute-phase protein (meaning it rises when there is inflammation, even in someone who is iron-deficient). Systemic inflammation and fatigue induced by anemia (which often goes undetected) are hallmarks of celiac disease.
As you are a person with diagnosed celiac disease and female, if I were your physician (and I'm not ;) )
Iron deficiency is difficult to diagnose in people with celiac disease, and it is even tougher to treat. Iron (yes, even heme iron) is not well-absorbed in most healthy people, so a person with celiac has an even harder time of it.
A normal blood count can be very misleading, for a number of reasons. First, if the iron depletion has been chronic but not severe, most people will adapt and can compensate enough that the blood count doesn't suffer much. Haemoglobin is a lousy test for iron status, because it can change quickly, and by the time things get bad enough to impact the blood count and Hb values, the person has an entrenched deficiency that can take over a year to fix. Yes, you read that right.
It's easy to overestimate how much iron one absorbs with an iron-rich meal. There are lots of dietary co-factors that affect iron absorption, and things like tea or calcium supplements (especially around meals) will swab up much of the iron you get with your food.
A note on units: The units used vary, but they are all derived from metric base units and are numerically equivalent: µg/L is the same as ng/mL.
EDIT: In response to your comments I want to add a few things, and it's better to do that here where I'll have more room.
Given your complaints I would have expected a value substantially lower than 70 µg/L, but factor even a light inflammatory response and we may be getting there.
The RDW -- the "red cell distribution width" is telling. This measures the variance in red cell size. You have an MCV -- mean corpuscular volume -- in the normal range, but it's just that, a mean, which means it doesn't tell you the extent of the extremes. With a high RDW, it means you have more cells with extreme sizes (unusually large or unusually small), something which wouldn't be reflected in the MCV.
My take: this is a sign that erythropoesis (red cell synthesis) is inconsistent, which suggests that even if there is enough iron in storage, it may not be getting to where it is needed when it is needed. The body moves iron around a lot, and transferrin is the transporter protein. You can have enough ferritin in cells, but if transferrin saturation dips, even for only a few hours, you're going to feel it sooner or later. (Again, I'd be very curious to see the results of a serum iron + transferrin test.)
One way to conceptualize it is like the gas tank of a car that is close to empty. There is fuel in reserve, but it's at the bottom of the tank. As you put the car into a curve, the gasoline sloshes to the side, and the fuel pump sucks air. The gauge says you have enough gas, but the engine is sputtering. Back to our iron: the bone marrow spits out a bunch of overly small red blood cells until more iron is available. The count looks normal, but you have a few gimps who can't do much but sit on the bench.
This is quite apart from the fact that iron is also needed in tissue -- in muscle, for example (myoglobin), and for any number of other haeme proteins that are no less important than the obvious haemoglobin. In other words: many parties compete for what sits on the transferrin, and when there isn't enough to go around, somebody goes home empty-handed. It's not always the same people.
The role of time of day is a bit more speculative, but serum iron does have a circadian rhythm. The level peaks between 11:00 am and 2:00 pm, then declines. This is well-documented, and although nobody is totally sure why, it's a reasonable assumption that this happens because overall iron demand is highest during this time of day, which also happens to be the time most people are the most alert and active.
Ask your doctor to do those additional tests. And if you take one thing away from my answer, let it be this: don't be afraid of iron. In somebody without hereditary haemochromatosis, it takes a lot before real iron overload sets in.
Lest you think this is only about iron, the B vitamins are cofactors in many of the processes (such as erythropoesis) that depend on iron. The absorption of those can be affected in a person with celiac disease also. You said your nutrient status was normal so I'm assuming your doctor did a serum B12 and folate test already. Your diet is good, but it can take a long time for the GI tract to heal from celiac damage.
Be patient, don't give up, and good luck!
I was on tricyclen for over 10 years and when I got off it I felt really tired and 'hormonally different" for a couple of years. I'm glad you're looking into this with some qualified professionals- which I'm not - but some things that worked for me include a b ( b12 is especially important). I really love the Prairie Naturals liquid B complex. Are you properly hydrated? This is important as well.
Can you tell us more about your activities? Do you work at a desk, or in a more physical environment? Tell use more what your day looks like.
I also find my body is in peak condition when I eat until satiated, but not "full". You could try diminishing your meals slightly to see if that changes your energy levels; that said, your lunches seem a little light on protein and fat. Maybe have 2 eggs with salmon for breakfast and hard boil the third for lunch?
Start exercising doing a graduated exercise program. Start slowly and build up. go for walks, then go run sprints on the beach or up and down a grassy hill, then start lifting some weights with dumbbells. OH, and getting at least an hour a day in the sun. I really hope you start feeling better soon. I think this will help. Are you depressed? Sometimes that can cause people to feel mentally and physically sluggish.
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