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Is It Possible To Bypass The Blood Tests In Favor Of Immediate Endoscopy?


BelleVie

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BelleVie Enthusiast

Hi everyone. I'm "officially" new here, though I've been haunting for a good while. 

 

Like SO very many of you lovely, helpful people, I've been sick in weird ways for as long as I can remember. After a very long journey into innumerable aspects of nutrition and holistic health, I finally realized that gluten is/has been the source of my sickness, and upon this realization, I immediately cut it out of my diet. That was almost 11 months ago. I've followed a strict gluten free diet since then, with the exception of cross contamination, which I didn't really take seriously until recently. 

 

When I first cut gluten out, I thought that I must just be sensitive. The possibility of celiac never occurred to me, though I was familiar with the disease at the time. But as time has gone on, I've thought more and more about my health history, it has become apparent to me that I've had MANY celiac symptoms through the years, and that these symptoms cleared up once on a gluten free diet. 

 

I would happily live the rest of my life without gluten, and I quite honestly don't want to be ANYWHERE near the stuff. I was delighted when I figured out that gluten makes me ill, and each time I turn it down, it makes me feel GOOD knowing that I'm turning down the substance that made me feel sick for so long. BUT (ha!) the big but...

 

I would like to pursue a diagnosis for a couple of reasons. The first is family: if I do indeed show evidence of celiac disease and can get a positive diagnosis, this might be the leverage needed to encourage my family to get tested. They are not the sort of people who think about nutrition or the source of their illnesses. They're more of the "give me a pill and send me on my way, doctor" types. But if I have a fancy, shiny diagnosis, I think they might get tested, and I KNOW that removing gluten from their diets (particularly my mom's) would be life changing for them. I suspect that the majority of my mother's strange healthy issues could be related to celiac disease. 

 

The second reason is because of the obvious lifestyle changes that one must implement. I'm already quite strict, as I said, but I haven't really enforced CC issues when eating with my family or in restaurants. I know it seems silly, because I DO value my health above all else, but if I'm going to be incredibly particular about cross contamination issues, I feel that I need to have a more valid reason than "I just feel better not eating it." It's a big thing to ask your family to completely change everything about the way they prep food just because you're coming over for lunch. It's a big thing to ask a restaurant to be so incredibly particular with your food prep if you don't have a completely legitimate (I guess in my mind that's an official diagnosis) reason for such a request. 

 

Anyway, the main question that I wanted to ask is this: If, after being on a gluten free diet for nearly a year, it will take months of suffering to MAYBE get a positive blood test, (and like I said, I absolutely DREAD being back on gluten,) would it not make more sense, given my history of symptoms, to just go straight for an endoscopy to check for damage after just a few weeks of ingesting gluten?

 

Or is it the case that doctors are generally unwilling to do the procedure without first having a positive CBP? 

 

Thanks so much for reading/listening to me share experiences/any advice you may have. 

 

:)

 


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kareng Grand Master

Ask the GI. Take this in for him/ her to see.

Open Original Shared Link

What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

Prior to blood testing we recommend 12 weeks of eating gluten.

Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.

BelleVie Enthusiast

Thank you! 

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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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