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Problem Getting Officially Tested - Phobias

r0ckah0l1c

By r0ckah0l1c
in Doctors

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r0ckah0l1c Apprentice
r0ckah0l1c
Posted

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
MySuicidalTurtle
Posted

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
r0ckah0l1c
Posted
  • Author

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
Jestgar
Posted
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
KerriKnoxRN
Posted

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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    • trents
      Eating gluten before blood test

      By trents · Posted

      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      alright thank your help! 🤍
    • Scott Adams
      Eating gluten before blood test

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems

      By Scott Adams · Posted

      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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