Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Problem Getting Officially Tested - Phobias

r0ckah0l1c

By r0ckah0l1c
in Doctors

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,005
    • Most Online (within 30 mins)
      7,748
    Ellen Watts
    Newest Member
    Ellen Watts
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • wellthatsfun
      confirmed via biopsy, quite depressed

      By wellthatsfun · Posted

      i am australian. we do have plenty of substitutes, but most are very expensive compared to the originals. i believe i'll just stick to home cooked meals and not have many treats at all. it's sad but it's just so much easier. also, ive heard far too many horror stories of people ordering gluten free food from restaurants and cafés, explicitly telling servers and kitchen staff that cross contamination is a strict no go, and they still get very sick. until i find a reasonably priced fully gluten free kitchen somewhere, i am not eating out for my safety and sanity.
    • wellthatsfun
      confirmed via biopsy, quite depressed

      By wellthatsfun · Posted

      thank you all for the kind words and support. it truly means a lot. i know i will adapt, it really just is a grieving process right now though. looking forward to feeling healthier!
    • The Logician
      Gluten Sensitivity

      By The Logician · Posted

      To Trent’s, yes, from what i’ve read it is not uncommon for digestive systems to become less tolerant to gluten over time. Many types of sensitivity or allergies arise in older people who never had a problem. I don’t see why you are focusing on anything but the fact that after years of my sensitivity to gluten, for whatever reason , it has disappeared after a bout of antibiotics. What i’ve read is antibiotics can make gluten sensitivity worse. In any event, in my case, if I can still eat all the wheat products I want with no reaction after a month or more since my hospital stay this is something that should be investigated. Time will tell.
    • The Logician
      Gluten Sensitivity

      By The Logician · Posted

      I had a UTI, blood cultures are standard to insure that the infection does not get in the bloodstream which can lead to sepsis and death. In my case there was bacteria in my blood which necessitated 48 hours of antibiotic IV
    • Wends
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Wends · Posted

      Hi Cameo674. just read your post. Well wishes to a correct diagnosis so that you can get on track to healing and feeling better. Personally I know it’s good to have the eosinophilic disorder ruled out too, as this can show anti-ttg igA antibodies too. But usually without the anti-gliadin antibodies unless gliadin is an allergen for you. Thanks for posting the link to look up SNPs rs… numbers on another post. Was useful. Looking at your result, ”Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies?” To me it reads.that you carry the high risk HLADQ2.5 haplotype.      
×
×
  • Create New...