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Problem Getting Officially Tested - Phobias


r0ckah0l1c

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r0ckah0l1c Apprentice

I have several signs of celiac disease which began appearing several years ago, my doctors all have told me to go to a gastroentronologist (sorry if that is spelled incorrectly) to get an endoscopy tissue test or blood test, however, I have a fear of medical devices. I have never in my life had my blood drawn, I find it extremely difficult to get shots and can't even recieve novacain at the dentist while taking sedatives, I am afraid of IVs and being unconscious during procedures. I am really concerned and wonder if there are testing alternatives? I eat gluten free and am on medicine for intestinal issues and I have seen a great deal of difference, as soon as I try to eat gluten again I get extremely depressed and ill with terrible cystic rashes and joint aches along with feeling extremely weak and tired. I know that I need to get tested but I don't know how =/ I appreciate any help! Oh, I am also only 18 so money/insurance is sort of an issue as well as far as testing options.


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MySuicidalTurtle Enthusiast

Hello! I am sorry to hear about your phobias. Not everyone needs to be officially diagnosed, so, you may just want to do an elimination diet to see the results and prove to yourself that different foods were the issue. Some doctors accept that, but there are also stool tests that you can order. You do have to eat gluten to take any tests. It is really up to you and your situation whether you want that official diagnosis.

Good luck!

r0ckah0l1c Apprentice

I have been eating gluten free so I guess that is what I will keep doing. The doctor had me go back to eating gluten for the month of february but I ended up in so much pain that I only did it for 2 weeks and he said that wasn't enough to do a stool testing. Thank you for your help =)

Jestgar Rising Star
I have been eating gluten free so I guess that is what I will keep doing. The doctor had me go back to eating gluten for the month of february but I ended up in so much pain that I only did it for 2 weeks and he said that wasn't enough to do a stool testing. Thank you for your help =)

But maybe that was enough for you to know it's bd for you?

  • 2 weeks later...
KerriKnoxRN Newbie

I agree with the rest of the posters here that there is really no reason to get an 'official' diagnosis. Why do you feel that you need one? You already know you can't eat gluten, so why bother with doctors doing tests that are notorious for not diagnosing Celiac anyway.

Really, the tests don't always show Celiac if you have a more mild case or have less damage. Even the 'Gold Standard' of an intestinal biopsy is not always right because you have to have a certain level of damage to be read as positive.

So save your money and be happy that YOU found out when you did instead of 10 years down the road!

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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.
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