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My Symptoms


AWonderTree

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AWonderTree Rookie

About four months ago, for maybe a year, I felt as if I had an unusually small appetite. I would try to eat as much as I could but be unable to satisfy my caloric needs. I could either stuff myself until I became uncomfortably full (and I often was!), or eat just a little and be lightheaded. I wish I had noted my bowel movements at this time, but I believe I went maybe once every 3-4 days and they were typically a one on Open Original Shared Link. I'm wondering if I unintentionally backed up my body with too much food that caused a cycle of having a small appetite and poor bowel movements. On the other hand, I don't even know if that's possible.

In the next stage of this predicament I listened to my body's hunger signals. I didn't eat much during this time, so I lost a lot of weight. During this period I also saw a doctor. He ran some blood tests including vitamin checks and the celiac panel. Everything came out in the normal ranges except for low vitamin D. His conclusion was that I have an eating disorder. :rolleyes:

This leads me to the stage I'm at now. I began eating a reasonable amount of food and was amazed that my body would accept it. (However, I've been eating so healthily that sometimes my calories fall a bit short.) Right now a chief concern is, once again, my stools. Despite eating what most would probably consider ridiculously healthy and despite taking Miralax as prescribed by my GI, my stools have been mostly twos but also sometimes ones on Open Original Shared Link. (If you want me to post what I've been eating, just ask.)

I'm really considering the possibility of having celiac disease, so here are some things to consider along with the above. (Note: I know some of these might be insignificant, but given some of my more mysterious symptoms, I want to be thorough.)

  • My aunt has celiac disease.
  • On the same side of my family, I remember my cousin getting migraines so bad she would cry. Her medication didn't even help them. I no longer talk to her, but I wonder if they were from celiac disease.
  • The sweaty-feeling anus that I've posted about.
  • My arms and legs seem to fall asleep with light pressure. It happens when I stretch and sometimes when I merely rest a limb on an object. (I thought this would be from a vitamin deficiency, or is it from a lack of vitamin D?)
  • Tinnitus (ringing in the ears) (but I admit to having listened to music too loudly on headphones... but I'm only 22 :( )
  • Low libido (from low vitamin D?)
  • I always wake up from sleep after about three hours.
  • My left eye has worse vision than my right (celiacs seem to have problems with the left side of their bodies?)
  • I have felt abdmonal pain, but it has been minor, has only happened a few times, and has only happened when I've eaten a lot. (One time after I ate a sandwich and a hotdog, I had a single sharp pain in my abdomen.)
  • When I first thought I might have celiac disease, I tested myself by eating two tortillas and dry cereal. If I don't have celiac disease, I would love to know why I got a tingling stomach, I couldn't sit still, and I got diarrhea. I've been unable to repeat this episode despite eating lots of gluten. Moreover, there have been other times in the distant past that I got the tingling stomach, inability to sit still, and diarrhea pattern.
  • In the morning when I do a yoga pose that involves lifting my legs in the air, I sometimes get extremely disoriented (or could this be from not eating first?)
  • This might be insignificant, but as a child I experienced formication ("an abnormal sensation of insects crawling on or under the skin").

I'll get a biopsy of my small intestine in three days. I'll tell you the results when I get them.

Please share your thoughts. Thanks! :)


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MySuicidalTurtle Enthusiast

Well, Celiac Disease does come with a lot of symptoms. It sounds like some are common but others you have I have never heard of. Hopefully your biopsy brings some answers.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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