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Pre Dr. Appt Research


kiddo0215

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kiddo0215 Newbie

I don't even know where to start. I have aunts who have been diagnosed with Celiac's... Recently I have been having gallbladder issues. While researching gallbladder on the internet I have come accross message boards where people had their gallbladder out only to find out it was Celiac rather than their gallbladder.

Autoimmune disorders are rampant in my mother's side of the family- of the 7 surviving sisters only one of them doesn't have any diagnosed autoimmune disorders. They include Lupus, diabetes I, Sjogren's, and RA. Also - Celiac's. One had a morton's nueroma that developed into CRPS. I have been scared my entire adult life that I was next...

I had a right thryoidectomy when I was 23 (now 36) because of an autonomous thyroid tumor. I am wondering if anyone has heard of a link between this type of tumor and celiac's?

When I was at the hospital the ultrasound showed sludge in my gallbladder and then the HIDA scan showed no stones, but a thickening of the wall of my gallbladder. The surgeon wants me to go for a repeat ultrasound to find out if the sludge was "hiding" stones. My symptoms are very similar to those I have found for gallbladder - but could also be similar to Celiac's.

This might be a dumb question, but - how hard to I push for a test for Celiac's?


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GlutenFreeManna Rising Star

I don't even know where to start. I have aunts who have been diagnosed with Celiac's... Recently I have been having gallbladder issues. While researching gallbladder on the internet I have come accross message boards where people had their gallbladder out only to find out it was Celiac rather than their gallbladder.

Autoimmune disorders are rampant in my mother's side of the family- of the 7 surviving sisters only one of them doesn't have any diagnosed autoimmune disorders. They include Lupus, diabetes I, Sjogren's, and RA. Also - Celiac's. One had a morton's nueroma that developed into CRPS. I have been scared my entire adult life that I was next...

I had a right thryoidectomy when I was 23 (now 36) because of an autonomous thyroid tumor. I am wondering if anyone has heard of a link between this type of tumor and celiac's?

When I was at the hospital the ultrasound showed sludge in my gallbladder and then the HIDA scan showed no stones, but a thickening of the wall of my gallbladder. The surgeon wants me to go for a repeat ultrasound to find out if the sludge was "hiding" stones. My symptoms are very similar to those I have found for gallbladder - but could also be similar to Celiac's.

This might be a dumb question, but - how hard to I push for a test for Celiac's?

Tell the doctor you have a family history of celiac and hopefully you won't have to push to hard. The harder thing is finding a doctor that knows what celiac's is or is up to date on it. Don't let them tell you only children have it (they used to think it was something kids outgrew, now they know that's false). The best thing to do if you don't have a doctor's appointment yet is to search for a knowledgeable doctor. You can try searching this board for a doctor recommendation in your area or you can make a post asking for doctor recommendations. Also, be sure to keep eating gluten until your testing is done or the tests could be false negatives. If the test's come up negative anyway you can always try the diet to see if it helps.

WheatChef Apprentice

Look up all of the tests that need to be done for a proper diagnosis. Don't ask, tell the doctor to perform the tests. It's your body, your health and your future but it's only his car lease payment for that month. Because you do have a relative with celiacs (along with others with comorbid diseases) I would simply tell the doctor when you're making the appointment that you are coming in to get tested for Celiac disease. Once you get there, tell the doctor about your family history, your symptoms and then whip out your little piece of paper that has the required tests on it and tell him that he is going to order all of these tests for you. You're not there for a consultation (odds are he won't be able to help with that), you're not there for a diagnosis (yet), you're just there to have him draw your blood and send it off to a lab. Tell him that if the tests come back negative that you'll be interested in knowing what he thinks about the matter, also ask him if there are any additional tests he would like to run at the same time but above all, don't be shy in telling him "no" if he starts trying to talk you out of one of the tests you told him to do.

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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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