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Recently Dx Celiac Struggles W/ Side Effects


pixespirit

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pixespirit Rookie

Greetings,

I am looking for support from others who may have gone through similar experiences. I need to know if what I'm going through is normal. Any feedback is appreciated.

I'm a 37 year old woman who was diagnosed (dx) w/ celiac disease Jan. 15, 2010. Upon receiving the dx, I changed my diet IMMEDIATELY. I've been experiencing loose stools since the beginning of December 2009, and I continue to have it today. My food moves through me within one hour. Everything I've read indicates that people start feeling better w/ more energy after changing their diet. I have yet to experience that 2 1/2 mo. later. In fact, I'm more lethargic each day. I got B12 shots several times over the past 6 months, but I need to lay down on a daily basis. I am a professional and I'm in graduate school working on my second graduate degree. I am also a mother and wife. Children were tested for Celiac, and thankfully both were negative. In addition to going gluten free, I cut out a great deal of sugar and soda. Additionally, I gained weight back in November and I continue to hold onto despite the new rabbit eating diet. I've called my dr. several times. He's sending me an order or more blood work to see if the Spru is decreasing. I do yoga when I can and would do it three times a week if my schedule allowed for it...but other duties call---sadly. I saw a nutritionist who gave me good idea's and helped me work through my sweet tooth addiction. Honestly, the loose stools and lethargy are driving me NUTS! I can handle the diet...but going to the bathroom 4-6 times a day and NEEDING a nap on a daily basis is not working for me.

Additional health issues include:

Life long allergies (environmental)

Gull Bladder removed 9 years ago

3 sinus surgeries

Ideas? Suggestions?


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Lgood22573 Rookie

The only thing I can offer is this. My father and brother both had their gallbladder removed and their food travels through them much quicker than it did before the surgery.

pixespirit Rookie

The only thing I can offer is this. My father and brother both had their gallbladder removed and their food travels through them much quicker than it did before the surgery.

Thanks--Sadly, up until December 2009, this was not an issue for me. I just happen to notice a trend with Celiac and Gull Bladder which is why I shared...Looking for magic fix :)

ravenwoodglass Mentor

Is your house gluten free? Have you done the kitchen things that need to be done like a dedicated toaster, no cooking with wheat flour even for others, restricting where others eat gluten foods to help keep crumbs down etc? Have you checked all meds OTC and script, script drugs that are generics need to be checked at each refill, supplements, some will say gluten free but still have wheat or barley grass which really is not safe for us. How about your toiletries and cosmetics, those should be gluten free also.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
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