Fatigue And Other Symptoms--Cause?

[pinktulip103]

I apologize in advance that this is long. I'm starting to think that I may have a Celiac's disease or gluten intolerance but not really sure if my symptoms may be the result of something else. I have been a Type 1 diabetic for over 16 years and have been vegetarian for about 13 years. My diabetes is very well controlled and I have no complications. I have also been diagnosed with depression and generalized anxiety disorder (about 2 years ago) and, with medication, have made a lot of improvement. For the past year and a half or so, I have been extremely exhausted all the time. I sleep about 10 hours every night and it is still a huge struggle just to get out of bed in the morning. I have no difficulty falling asleep or staying asleep. On the weekends, I constantly nap (sometimes I sleep 16 hours in a 24 hour period). I nearly fall asleep at my desk at work pretty much everyday. I have difficulty concentrating most of the time. I still manage to go to the gym about 5 times a week for 1-2 hours and probably the only time that I feel awake and energized is during/immediately after my workouts. I have been to a doctor about the fatigue and have been tested for anemia, thyroid problems, and mono (this was about a year ago). I don't know what the numbers were, but I was told they were in the "normal range". More recently, I have just had that gross feeling in my stomach a lot...nausea, bloating, and gas are my main symptoms and it is usually after eating. However, I have no issues with diarrhea or constipation. I have noticed that I usually feel fine if I eat something like a salad or fruit and feel the worst after eating a lot of carbs (bread or pasta, typically). However, I don't always feel bad after eating bread...maybe about 50% of the time. It is also much worse if I eat bread in the morning than if I eat it in the evening. Usually after eating something full of carbohydrates, I have to take more insulin for my diabetes and even if my blood sugars don't go too high, there will be a spike about 2 hours after eating (which is typical for diabetics). I don't think it's just the blood sugar spike that is making me feel bad because I haven't had stomach issues until recently. I have also had very severe headaches for the past 3 or 4 weeks. Other symptoms that I have that I read could occur with Celiac's disease are with my eyes--they are very dry and I am extremely sensitive to light (these problems have gotten worse over the past few years). I also have been gaining weight. I count every single calorie I eat and run several miles everyday. I have logged my calorie intake/burn on sites like www.thedailyplate.com and it says I should be losing 2 pounds per week but I am gaining (I have gained 18 pounds over the past year and a half or so). Many of my symptoms are consistent with hypothroidism. I had my TSH levels tested again a few weeks ago (I have this done every 3 months because of the diabetes) and it was just above 4.0. "Normal range" is considered 0.35-5.5, however, upon looking online, I have found that many doctors now consider individuals with a TSH value of above 2.5 to have hypothyroidism. I won't see my endocrinologist again until November, so I can't ask about that until then. My mother has hypothyroidism and I know it can be genetic. I generally feel better when I eat less bread and pasta, but again I don't know if this is related to a gluten sensitivity or diabetes (blood sugar fluctuations). I feel like maybe I am just extremely paranoid and perhaps a hypochrondriac, but I would really like to figure out why I feel the way I do. I have brought up the chronic fatigue with 3 separate doctors and none of them were able to figure it out. Over the past week or two I have been slowly eliminating gluten from my diet and have had less of the stomach issues but still headaches and fatigue. I know that thyroid disorders are common in diabetics but have also read that Type 1 diabetics are 10 times as likely to have Celiac's disease than non-diabetics. Could my symptoms possibly be gluten-related or should I find yet another doctor to help me figure this out? I applaud anyone who actually read this entire thing and thanks in advance for any input.

[torimuse]

I'm going to preface this by saying I am by no means an expert on anything.

However, that being said, yes. Do go get yourself tested. I caught this after only a year and a half, but the fatigue was already devastating. I almost didn't graduate college because I started sleeping through class. Now I can't go to sleep. (just kidding, but it sure feels that way after sleeping 16 hours a day) If you don't want to wait for another doctor, there is a test for (not Celiac's) but gluten intolerance in general at Enterolab. It's a stool sample test. You can find it on google. I've heard some mixed results about this test, so go with your gut feeling. (pun completely not intended, but amusing nonetheless)

If you're going to get tested, keep eating gluten. I can't stress this enough. You need to be eating the equivalent of 3-4 bread slices a day (or so I've heard) for the tests to have any chance of being accurate. After you get tested (blood test *and* biopsy) would probably be the best time for you to go completely off gluten. Don't even bother to wait for the results.

Your headaches may be persistent because you're still ingesting small amounts of gluten. I know Skylark thought for a while that it was just wheat that was bugging her until she didn't have rye for a while and little things she didn't even realize were connected cleared up.

Good luck with everything, and keep us posted! This board is very supportive, and we're here to help you with anything you need.

[sb2178]

1. Definitely get the thyroid under control. Can you make an endo appointment sooner OR just call? You are clearly symptomatic and should be treated.

2. Eat a lot of gluten for a few weeks (~ 4 slices of bread/day) and then get your blood drawn. Even if you have to talk a doctor into ordering the blood work before an appointment! To get a semi-accurate response you MUST be ingesting significant gluten.

3. Decide if you are willing to have a biopsy. If you are, then keep eating gluten. If you aren't, you can stop eating gluten entirely to see if that helps. It probably will, but the fatigue is slower to resolve than GI stuff for most people. I definitely had withdrawal headaches for about 3-4 days but I think that tends to be quite variable.

4. If you have a positive blood work or biopsy or dietary response, you should think about whether you want to have blood work drawn on nutritional status. A lot of celiacs are low/deficient in a number of nutrients and you may need to make a list of requests rather than trusting a doc to be up to date on that info.

[missy'smom]

Here's just one of many articles that have come out in the past year linking T1 and celiac disease. If you do a search for T1 on the forum you may find links to several others. I've seen some stating that endos are or should be routinely screening T1s for celiac disease.

Open Original Shared Link

[RiceGuy]

It definitely sounds like your symptoms could be related to gluten intolerance or Celiac.

I'm wondering; what happens when you eat a non-gluten carbohydrate? Something like rice, potatoes, buckwheat, millet, corn, sweet potato, winter squashes, etc. Do you experience the same symptoms, to a similar degree?

[pinktulip103]

Thanks everyone for all of your replies! I will definitely try to get in touch with my endocrinologist. I have been to several doctors about these symptoms and went back through all of my old test results and TSH has always been above 3.5 (for about 2 years now since I was first tested) and seems to be getting a bit higher with each visit. None of my doctors have mentioned this being too high or that it may require treatment even though I do have a lot of the symptoms of hypothyroidism. I would like to get tested for celiac disease, however, even before I suspected there were issues, I doubt that I ate the equivalent of 3-4 pieces of bread a day (trying to keep my carbs pretty low to help with the diabetes). I also haven't eaten potatoes or rice in a really long time, but I have had quinoa a few times very recently and felt fine afterwards. I also eat corn and popcorn and have never noticed feeling particularly bad after that. I think I am just going to experiment for a few weeks, trying to completely eliminate gluten from my diet and see how it makes me feel. I just started yesterday, so we'll see how it goes. I did have something very strange happen though. Last night I had a glass of merlot (which I have fairly frequently) and it was the same kind I have had before. The first sip of it made my lips and tongue go numb but after a few more sips it slowly went away. The same thing happened this morning when I had my coffee (plain Starbucks coffee with some sugar-free coffee-mate powdered creamer). I have never experienced this before. Has anyone else experienced this before or know what could cause it? I am fine going gluten-free if that makes me feel better, even without an official diagnosis, but I do want to make sure that there isn't something else going on.

Thanks,

Caroline

[Roda]

When you go to the endocrinologist you need them to order a TSH, free T3, free T4, and test for thyroid antibodies (can't remember the exact name). You sound like you have a thyroid problem. Autoimmune thyroid diseases, graves and hashimotos, are fairly common with celiacs. I also read an article before I was diagnosed (it was in the journal of endocrinology) that people with thyroid disease, particulary autoimmune, should be screened for celiac and vice versa. Food for thought.