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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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    • 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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