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

Ambiguous Results?

BeegYoshi
 Share

Recommended Posts

BeegYoshi Newbie
BeegYoshi
Posted

I have been gluten free since I was a toddler since I had a very nasty reaction to gluten when solid foods (e.g. sandwiches, cookies) were being introduced to my diet. 

Only recently (~18 years gluten-free) have I decided to get tested for celiac as I have other health problems I want to figure out and this is sort of the first step to figuring out what's wrong. 

Around August of last year I got the blood test done following 3 weeks of a gluten diet and the results were ambiguous according to my doctor. I had very elevated IgG levels (89) but my IgA level was normal (0.5) and they said I was not IgA deficient. (This confuses me as I had thought .8-2.8 was the normal range for adults and 0.5 would make me deficient but I'm also not a doctor)

Following this I was told to have an upper endoscopy/biopsy done and I did 3 months of a gluten diet this time eating 2x as much gluten as I did before to ensure results (this was recommended by my gastroentrologist). That was about 2 months ago and I just got the results of that test back. They said my small intestine looks totally normal, they looked in several places and the villi are fine and there's no evidence of damage.

I asked what that meant for me and they essentially said that they can't be certain and all they can say is gluten definitely makes me feel bad so just keep on the gluten-free diet. They said I can try genetic testing if I want but given that it's $900 where I live that's not a possibility for me.

 

I'm kind of confused and frustrated, this whole ordeal took 6 months and I'm basically exactly where I started but now I'm out a few hundred dollars.

Has anyone had a similar experience or has any advice as to where to go from here?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! 

The standard recommendation for a gluten challenge would be to eat around 2 slices of wheat bread daily for 6-8 weeks before a blood test, and 2 weeks before an endoscopy, so it's not clear if you were eating enough before your blood tests. You mentioned that you "had very elevated IgG levels (89)," so you had one positive blood test for celiac disease. One positive test does mean that you could indeed have it, even though your biopsy was normal.

Either way, how did you feel when you ate gluten? Did you have any symptoms?

Around 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn't a test for NCGS. It sounds like you may be in this category, but only if you are having symptoms when eating gluten that go away when you go gluten-free.

Link to comment
Share on other sites
trents Grand Master
trents
Posted

Ditto to what Scott said.

Link to comment
Share on other sites
frieze Community Regular
frieze
Posted

Request the report from the pathologist that read the slides. 

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,796
    • Most Online (within 30 mins)
      7,748
    Cjylha
    Newest Member
    Cjylha
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      68.9k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Elliebee
      Does Hashimoto’s Hypothyroidism elevate Ttg levels ? I have had 3 blood test results where ttg levels are around 39-43 (range 0-19). The first test was in 2021 before I was diagnosed with autoimmune thyroid disease. I had an endos

      By Elliebee · Posted

      Benefits are national but different Drs and health trusts interpret them differently unfortunately. Those diagnosed are supposed to get an annual review, Dexa scans every 2/3 years (one on diagnosis) , annual blood tests to check for vit deficiency etc. But very few seem to get these !    Advice from gastroenterologist:   I suggest monitor if she is asymptomatic, Unfortunately I can not see gastroscopy report, i hope biopsies were taken from D2 and D1. She may also try Gluten free diet for 4-6 weeks and recheck TTG to see if normalise. /—   I know 4 biopsies were taken from D2 in 2021.  I have contacted my private health care provider requesting a referral to gastroenterologist. I’m fed up being monitored! Also worried that if I do have celiac disease I’m damaging my gut and raising risk of cancers which freaks me out !   
    • sboo
      Anybody else have a similar experience...theories welcome as its something which i dont really understand.....

      By sboo · Posted

      I had a couple of friends who after a course of antibiotics were struggling to eat much. The anti biotucs can kill off alit of your gut bacteria and it took quite some time to build these up again but after a year or so they could eat normally again.
    • trents
      Is McDonald's Safe for Gluten-Free Orders?

      By trents · Posted

      Welcome to the forum, @Patrick-Tyler! I think most of us are at least a little nervous about eating at fast food restaurants, even McDonalds, who claims to offer gluten-free fries.  What does that mean? Only that gluten is not an intentional ingredient or does it also mean the fries are cooked in a dedicated frier? This has long been a question kicked around by our community and I'm not sure anyone has ever found a clear answer. I wounder what kind of an answer you would get if you went to a particular McDonalds and asked the manager, "Do you cook your fries in a dedicated frier or are other food products cooked in the same frier that you use to cook your fries?"  Personally, I have eaten fries and meat patties (I take my own gluten free bread or just eat it as a lettuce wrap) at McDonalds quite a few times over the past 20 years since my dx without any discernable gluten reaction. But I am not a particularly sensitive celiac so what I get away with may not be safe for every celiac.
    • Patrick-Tyler
      Is McDonald's Safe for Gluten-Free Orders?

      By Patrick-Tyler · Posted

      Hai Community, I have doubt on  McDonald's? even it is dedicated to fryers and added gluten-free buns, I’d still be nervous about ordering there for my daughter who has celiac. Anyone else feel uneasy about trusting fast food places with cross-contamination? Would love to hear if anyone’s had good (or bad) experiences with gluten-free options at McDonald's or other fast-food restaurants. Thank You...
    • Nogluten4thisgirl
      Is the gluten challenge worth it with what I’ve got going on here?

      By Nogluten4thisgirl · Posted

      I got my dna test back and here are the results:  HLA-DQA1, ALLELE 1 Value 01:02 HLA-DQA1, ALLELE 2 Value 02:01 HLA-DQB1, ALLELE 1 Value 02:02 HLA-DQB1, ALLELE 2 Value 06:02 I had a CT scan, which nothing was found except for a large bowel fecal mass, which doesn’t surprise me because I get super constipated and my GI track doesn’t seem to push anything out.  Stuff just sits in my rectum hanging there…  My blood labs for celiac were negative, but I’ve also been gluten-free since May 2024. Here are my symptoms and why I was getting tested for gluten intolerance or celiac:  Chronic constipation, bowel not active, brain fog, language issues, finding my words, memory issues, brain feels like it’s on fire sometimes, adhd, depression, anxiety, dry mouth, mouth sores, skin lesions/sores that went away with gluten-free diet, dry eyes, joint pain and cracking, chronic fatigue (debilitating physical fatigue- not wanting to move anywhere), graphical tongue, breast tenderness, vitamin B12 and D deficiencies (while not on gluten-free diet), gas that would clear a room, leg and ankle feel like they are heavy or retaining water/painful when walking, acne, brittle nails, night sweats and horrible heart palpitations My GI doc said to do the gluten challenge, but honestly, I’m scared to go through it.  Many of these symptoms have cleared up after gluten-free.  Most noticeable is joint cracking has gone way down, mouth is not as chronically dry, my fatigue is better, graphic tongue is gone (I’ve had this my whole entire life!), vitamin levels are stabilizing, no more horrible smelly gas, my cuticles look much better.   I’m just not sure if it’s worth the true diagnosis and going through it all.   Thoughts??? 
×
×
  • Create New...