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Endoscopy First?


sickntired

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sickntired Newbie

I am new to this forum and have been reading lots of posts. It seems that most people have the blood tests and then an endoscopy in order to be diagnosed with Celiac. I have had blood taken 2 times in the last 2 years to try to figure out why I am always fatigued, foggy headed, muscles hurt, and have frequent headaches. All tests were normal accept for a vitamin D deficiency. another blood test was done in the ER last month when I had extreme abdominal cramps for 5 hours and finally vomited up everything I had eaten all day. They did a blood test, an ultrasound and a CT scan and eventually told me I had indigestion and sent me home. <_< After a google search of my gastro symptoms, I thought I had gastroparesis.

My Dr. finally sent me to a gastroenterologist who has ordered an endoscopy- but not a blood test. She told me they would do a biopsy for Celiac, but did not tell me what Celiac was, and was more concerned that I was constipated than anything else. So I went home with my Miralax prescription and googled Celiac. WOW :o- I am now convinced this is my problem since it explains pretty much every ailment I've ever had! My endoscopy is Monday and I have never been so excited to have a medical procedure before - except when I had my son!

So I guess my question is- Is it normal for a Dr to go directly to an Endoscopy rather than do blood tests first? Would the other blood tests have shown results that would suggest Celiac, or do they have to do a special test for that? If my biopsy is negative for Celiac, do I ask for blood tests?

Thanks,

Patti


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glutenfreeinminnesota Contributor

I am new to this forum and have been reading lots of posts. It seems that most people have the blood tests and then an endoscopy in order to be diagnosed with Celiac. I have had blood taken 2 times in the last 2 years to try to figure out why I am always fatigued, foggy headed, muscles hurt, and have frequent headaches. All tests were normal accept for a vitamin D deficiency. another blood test was done in the ER last month when I had extreme abdominal cramps for 5 hours and finally vomited up everything I had eaten all day. They did a blood test, an ultrasound and a CT scan and eventually told me I had indigestion and sent me home. <_< After a google search of my gastro symptoms, I thought I had gastroparesis.

My Dr. finally sent me to a gastroenterologist who has ordered an endoscopy- but not a blood test. She told me they would do a biopsy for Celiac, but did not tell me what Celiac was, and was more concerned that I was constipated than anything else. So I went home with my Miralax prescription and googled Celiac. WOW :o- I am now convinced this is my problem since it explains pretty much every ailment I've ever had! My endoscopy is Monday and I have never been so excited to have a medical procedure before - except when I had my son!

So I guess my question is- Is it normal for a Dr to go directly to an Endoscopy rather than do blood tests first? Would the other blood tests have shown results that would suggest Celiac, or do they have to do a special test for that? If my biopsy is negative for Celiac, do I ask for blood tests?

Thanks,

Patti

I never had a blood test. I was having such bad problems my doctor sent me right to a gastroenterologist, and they told me to go on a high fiber diet for two months >:( When that obviously didn't help, they thought I had Crohn's and ordered a colonoscopy....as I was about to go in for it, they asked if I wanted an endoscopy also, so I said sure, why not? Glad I did. Diagnosed the next day with Celiac Disease..I had no clue what Celiac Disease was or what gluten was for that matter lol..good luck!! It's an adjustment, but well worth it if that's what you have!

QuinnT Newbie

Gastric conditions can be very hard to gauge, since severity of symptoms does not really correlate with severity of disease. a lot of GIs like to do EGDs right off the bat because they can diagnose the disease and view the damage directly, instead of trying to guess using blood work.

Blood tests aren't generally as reliable (or don't exist) for a lot of gastric conditions (ulcers/h. pylori, acid reflux, etc) but an EGD (upper endoscopy) would allow them to test for everything at once with relative certainty.

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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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