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xcraigx

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xcraigx Rookie

Hi, please help. I’ve been experiencing varying symptoms for the better part of the last year. At first it began with floating stools and it has increased with time to more frequent and loosely formed bowel movements. These days I go to the bathroom a few times a day and its anything but healthy. I’ve also experienced a significant drop in energy as well as a great deal of muscle fatigue. It takes very little muscle exertion to leave me feeling sore for days and I experience muscle twitches almost constantly. My muscles really feel drained all the time. I went to a doctor who did and EKG and discounted the likelihood of any neuromuscular disorders. Two months ago I was diagnosed as having Hypothyroidism and I have been taking a daily dose of Synthroid ever since. I was pretty sure that this was the problem and it would be licked in no time but my symptoms have not dissipated as I had hoped. The more I read about celiac disease, the more I identify with the symptoms. I’ve made an appointment for Dec 22 to see my doctor about it and take the necessary next steps. Was just wondering if these symptoms seem familiar to Celiac since it seems there are some very knowledgeable people here. I know that a paragraph of description is no means for diagnosis but I came across the site and figured I’d learn as much as I can before I head to the doctor in three weeks. I don't have any food allergies that I'm aware of. Any comments or further discussion would be great! Thanks a million.


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jerseyangel Proficient

Hi and welcome! Your symptoms could point to Celiac--since you have an appt. coming up soon, I would suggest not cutting gluten intake at all--if you are tested, cutting out gluten could cause a false negative. Best of luck in finding out whats going on :)

nettiebeads Apprentice
Hi, please help. I’ve been experiencing varying symptoms for the better part of the last year. At first it began with floating stools and it has increased with time to more frequent and loosely formed bowel movements. These days I go to the bathroom a few times a day and its anything but healthy. I’ve also experienced a significant drop in energy as well as a great deal of muscle fatigue. It takes very little muscle exertion to leave me feeling sore for days and I experience muscle twitches almost constantly. My muscles really feel drained all the time. I went to a doctor who did and EKG and discounted the likelihood of any neuromuscular disorders. Two months ago I was diagnosed as having Hypothyroidism and I have been taking a daily dose of Synthroid ever since. I was pretty sure that this was the problem and it would be licked in no time but my symptoms have not dissipated as I had hoped. The more I read about celiac disease, the more I identify with the symptoms. I’ve made an appointment for Dec 22 to see my doctor about it and take the necessary next steps. Was just wondering if these symptoms seem familiar to Celiac since it seems there are some very knowledgeable people here. I know that a paragraph of description is no means for diagnosis but I came across the site and figured I’d learn as much as I can before I head to the doctor in three weeks. I don't have any food allergies that I'm aware of. Any comments or further discussion would be great! Thanks a million.

The first part of your post got me going "yep, celiac" then the rest sort of confirmed it for me. That's exactly what my D was for six weeks before I went to my dr. And the fatigue (swimming upstream in a molasses river in Jan?) is so very much a part of celiac. I'd love to tell you to go on the gluten free diet now, but since you're seeing the dr. in 3 weeks, you'll probably need to stay on gluten so he can run the full celiac panel and/or schedule a biopsy. And be sure to ask him/her just how much experience with celiac disease he/she has had. I've had a dr tell me I could probably go back to eating wheat. I knew she was dead wrong. And celiac disease or gluten intolerancd isn't an allergy. It's an autoimmune disorder - the body is attacking itself, as opposed to an allergy where the body is trying to protect itself by flushing out the invader.

Keep us posted and ask as much as you want. The people here are very knowledgable (we have to be). I've learned more in the three months since joining than I have in the past 9 years.

Annette

RiceGuy Collaborator

I agree that is sounds like gluten intolerance. The damage that results might be the reason for the Hypothyroidism as well. I know someone who I suspect is suffering from the same thing. Once your gut is damaged, the malnutrition and toxins can lead to many other problems. The various nutrient deficiencies are like not eating right to begin with, since the body just can't absorb nutrients properly. The thyroid depends on iodine and magnesium, just to name two. Of course the body needs to be treated as a whole, so it's not like just certain vitamins or minerals can be singled out as more or less important.

In any case, you're in a good place to get answers and learn things you might never know otherwise. I hope you get the help you need asap.

darkangel Rookie

I agree... could be celiac or gluten intolerance. You may also be intolerant or sensitive to other foods. Dairy's the next biggest offender. Some others are nuts, eggs, peanuts, sugar, corn... Hopefully, the tests will give you some answers. If not, time to do some elimination.

xcraigx Rookie

Thanks for all your input everyone! :D

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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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