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Are My Symptoms Typical?


alissar

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alissar Contributor

Since I was a teenager, I have been suffering from unexplained anemia, GI problems, a daily headache and chronic fatigue, all of which became increasingly worse this past year (I am 25 now). After some researching, I decided to go gluten-free and have been gluten-free for 1month. Since then, my GI problems, headache, and fatigue have gone away completely so I believe gluten was the issue. My question is 2-fold: 1. Did any of you have symptoms that would come and go? For instance, some days I could eat toast and feel fine, other days (esp. Holidays or times with a lot of food), I would eat and have to get up from the table and make a b-line to the bathroom because my GI issues were so bad. If you have Celiac, do you normally have noticeable symptoms every single time you eat gluten? My second question is regarding my eyes. Every morning since I was a teenager, I wake up with VERY swollen upper and lower eyelids that gradually go down during the day. Sometimes, my fingers swell too. I have a low sodium diet and am not overweight at all. I have had blood tests for thyroid, kidney, Lupus, etc etc etc, all normal. My swollen eyes have become 75% better over the past month since going gluten-free but are still present. Have any of you experienced this symptom? If so, how long on a gluten-free diet before this symptom went away?THANKS for your help! This has been tough to manage on my own and many doctors do not know much about Celiac.


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WheatChef Apprentice

When you're not looking for it gluten can sneak in from everywhere so your body would be in a constant flux of purging and adapting to the poison. Before seeking doctor advice I decided to try and OD on gluten a few times and it would take a lot for me to be sure that any one particular meal was the actual problem (2 large pizzas, 1 tray of brownies, 2 loaves of bread etc). Once you get gluten-free you notice the effects of being glutened more because your baseline of comparison goes from being "mildly poisoned" to "normal" and swings from normal to poisoned are a lot easier to notice than going from mildly poisoned to poisoned.

I used to have a somewhat similar problem with my eyes. I think a lot of it had to do with the fact that I was in a constant state of severe dehydration and tear/saliva/mucous production was almost nil. While sleeping you can't continue to chug water over those 6-8 hours of sleep and so your body slowly withers away and dries out till you finally wake up and can start the rehydrating process. After getting glutened now I have sleep problems related to waking up in the middle of the night because my eyes/nose/mouth/throat/all of the above have dried out.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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