Jump to content

  • 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

Really Nervious - Help With Questions For My Gastro Appointment Tomorrow

jstanton8

Recommended Posts

jstanton8 Newbie
jstanton8
Posted

I am so nervous! I posted the results of my celiac panel a few days ago. Here they are again in case some of you didn't see them:

Tissue Transglutaminase IgG AB 4 (reference range <20 units is negative, 20-30 units is weak positive and >30 is strong positive)

Tissue Transglutaminase AB IgA 10 (same reference range as above)

Gliadin Antibodies IgA 2 (same reference range as above)

Gliadin Antibodies IgG 1 (same reference range as above)

The doc didn't order a total serum IgA or the Endomysial Antibodies. Should I ask for those tests to be run? I really just want to have the endoscopy biopsy and get it diagnosed one way or the other, but it would be about $1500 out of pocket. I'd wait til we have better insurance, but I've been so sick for 3 years that I just can't wait to stop eating gluten if that is what is making me sick. I just don't know what to do! Are there any questions I should ask or tests I should ask for from those of you with more experience? Thanks in advance! I SO appreciate all the support!

Julie

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

Celiac.com Sponsor (A8-M):


SaraKat Contributor
SaraKat
Posted

Those results look negative? My results were over 100 and one test was even over 400. I suppose if I were you, I would go gluten-free to see how you feel rather than doing a biopsy since your results look very negative. I am new to this though, so someone else might have a better answer.

Good Luck!

Oh, and I had the total serum IGA test and that one was actually normal!

jester Rookie
jester
Posted

I don't really have anything to add - will be watching the replies for my own appt coming up, though - but I just want to say GOOD LUCK!!!!

Maybe you could ask if they'd be willing to diagnose based on the results a gluten-free trial and then a gluten challenge? I could be wrong but I think others have mentioned some will do that, if the diagnosis is important to you. They might be willing to say gluten sensitivity instead of celiac disease or something. Just a thought.

cassP Contributor
cassP
Posted

my Ttg and Antigliadin results were similar to yours. and my total Iga Serum was deficient, which means my Ttg and Antigliadin results were inaccurate.

but my Endomysial Antibodies were positive.

the total Iga serum & Endomysial Antibodies are important tests to get!

BUT- this (and biopsies)- all depend on how much gluten you've been ingesting. you dont want to go thru all that if you havent been eating enough gluten- then the tests would just be inconclusive and a waste of time and money. so, ya- i dont know what you want to do with that.

i was pretty gluten lite for 10 years... and my doc only had me on a 2 week challenge- which im assuming wasnt enough for a solid test result. so im glad i didnt do the endoscopy. i think...

i wish i had been psychic enough to get all these tests done before i went on no carb diets, when i actually had D everyday... :huh:

ravenwoodglass Mentor
ravenwoodglass
Posted

Your doctor may not diagnose based on dietary exclusion, resolution of symptoms and then symptom reoccurance when gluten is added back in but your body will. While having a doctor derived diagnosis can be valuable with the high rate of false negatives in testing in the end it's your bodies response that counts for the most.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    4. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    5. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,345
    • Most Online (within 30 mins)
      7,748
    Scottweath
    Newest Member
    Scottweath
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.