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

Help! Test Results...

beansmom

Recommended Posts

beansmom Newbie
beansmom
Posted

If anyone can shed some light here... I don't think I have typical celiac symptoms. I have occasional GI symptoms but I was tested because I was researching why I have a very painful and annoying problem. I get blisters in my mouth - inside my cheeks, on my palate, even on my tongue. They pop within 12-24 hours and leave a sore that heals in a few days. I have talked to my dentist, an oral surgeon, and an ENT, all with no real help.

My searching led to a possibility of celiac so I had a blood test - celiac panel done. I just got the results:

IGA, serum = 216 (normal 81-463)

Gliadin AB (IGA) = 26 (normal <11)

tTG AB (IGA) <3 (normal <5)

The doc that ordered them wasn't sure what they meant and spoke to the lab (Quest). They said b/c a "comprehensive" celiac panel wasn't ordered they didn't do the tTG IGG or the antiendomysial antibody. Furthermore, the lab said the Gliadin AB is not a reliable test for celiac - I'm so glad I get to pay for it :huh: . So now before I spend anymore money I want to know if A) I need to do anymore tests and B)what tests!

Has anyone known any celiacs with mouth blisters?! My only GI symptoms are frequent bloating and occasional diarrhea within an hour of eating. I have also been lactose intolerant for the last 5 years and was diagnosed with autoimmune thyroiditis (hypothyroid) last year. Thanks for your help!!

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

Celiac.com Sponsor (A8-M):


leadmeastray88 Contributor
leadmeastray88
Posted

Hi there,

I would say that YES, you need more tests. The thing about the ones you got is that they didn't do an IgG or Total IgA. What the total IgA does is it tells you if you're "deficient" in those antibodies (and if so, those IgA tests you got mean nothing!) and then thats where the IgG comes into play instead. Before going gluten free, I would suggest re-doing the entire panel, ask for ALL of these:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

As for the mouth sores, I get them immediately following a glutening. It's how I know I've eaten something I shouldn't have. If it was a bad glutening, it's followed by an extreme GERD attack. So you could say that they could be attributed to Celiac. I should also add that thyroid issues (and other autoimmune conditions) are very commonly related to Celiac, as if you have one autoimmune condition it predisposes you to others.

I hope that helps, good luck! :)

happygirl Collaborator
happygirl
Posted

They did run the total IgA - that is the serum IgA. Based on these lab results, she is not IgA deficient.

The tTG IgG is typically run when you are IgA deficient (since the IgA based tests will not be accurate).

No one test is perfect, and sometimes people are only positive on the 'older' tests and not the newer tests. You may want to follow up with a biopsy since you have symptoms and an inconclusive serology.

leadmeastray88 Contributor
leadmeastray88
Posted
They did run the total IgA - that is the serum IgA. Based on these lab results, she is not IgA deficient.

The tTG IgG is typically run when you are IgA deficient (since the IgA based tests will not be accurate).

No one test is perfect, and sometimes people are only positive on the 'older' tests and not the newer tests. You may want to follow up with a biopsy since you have symptoms and an inconclusive serology.

My bad, I missed that one number - forget what I said :D

What happygirl said is right though - an endoscopy biopsy may be useful for two reasons:

1-to test for Celiac

2-to explore and make sure everything else is okay

beansmom Newbie
beansmom
Posted
  • Author

Thanks for the replies. I'm still at a loss for what to do. Should I schedule an appt with a GI doc? I don't really feel like I have a lot of GI symptoms. I have tried eating what I think causes the occasional D but sometimes it happens but sometimes it doesnt'. I also had a normal blood count and various vitamin and mineral levels come back normal. I don't really want to go throught a biopsy - I'm a chicken - if I'm just fishing in a large ocean of possibilities...

sbj Rookie
sbj
Posted

There's no need to be scared of an endoscopy!

beansmom Newbie
beansmom
Posted
  • Author

Well I guess I don't have to worry anyway... I just spoke with the doc that ran the tests. He spoke to a GI doc who said she only runs a total IgA and the tTG IgA. If those are normal she doesn't pursue anything more. Those tests were normal for me. No one can explain why the antigliadin is abnormal only that it should not have been done. So I'm left thinking I'm a lunatic for going down this path in the first place. I just want to stop having a sore mouth, please.

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted
Thanks for the replies. I'm still at a loss for what to do. Should I schedule an appt with a GI doc? I don't really feel like I have a lot of GI symptoms. I have tried eating what I think causes the occasional D but sometimes it happens but sometimes it doesnt'. I also had a normal blood count and various vitamin and mineral levels come back normal. I don't really want to go throught a biopsy - I'm a chicken - if I'm just fishing in a large ocean of possibilities...

Canker sores or blisters are very common with celiac disease and are a definite link. Some companies that do gene or blood testing for celiac disease will ask you this on questionnaires. I had canker sores for years on my mouth and tongue, plus I have autoimmune thyroid disease. You also do not have to have flaming GI symptoms with celiac disease.....it's an autoimmune disease and can affect people very differently. My canker sores went away completely and have not come back after 4 years gluten-free.

You may just be gluten sensitive and that can give you all the same symptoms as someone with full blown celiac disease. The fact that your blood and vitamin levels are fine may point to that as opposed to having celiac disease, which would cause intestinal damage with resultant deficiencies. Some also do not show deficiencies until damage gets really bad.

You have one autoimmune disease connected to celiac disease and mouth sores, plus lactose intolerance. You could see a GI doctor and ask them to do a full panel on the blood work to see what that shows. However, most GI docs will want to do an endoscopy and that's a decision for you to make. Other than that a trial gluten-free diet could be tried to see if some of your symptoms are alleviated. It all depends on how far you want to take it but you most certainly have symptoms of celiac disease. Good luck to you....I hope you find some answers!

sbj Rookie
sbj
Posted

I certainly hope you find some relief. Perhaps a second opinion on the blood test results?

The mouth sores could definitely be related to celiac, but there are other possibilities you may want to investigate. HFMD (coxsackie virus), pemphigus, herpes virus, Crohn's disease, A reaction to medication, and other food allergies.

nikki-uk Enthusiast
nikki-uk
Posted

Just to point out that you CAN have negative blood results and still have celiac disease.

My husband had neg bloods/positive biopsy.

beansmom Newbie
beansmom
Posted
  • Author

Thanks for all the replies. How can the biopsy be positive if the blood tests are negative? I'll have to think about that one... As for the other possibilities, yes, they are possible. I don't think the blisters are infectious (coxackie or herpes). Coxackie goes away and herpes looks like clusters of small blisters. I have had some blisters up to 0.5cm. I also have tried a steroid mouth rinse with no relief and remember having some when I was on oral steroids for a pinched nerve. Anyway, I think I will go ahead with a biopsy of my mouth before going to see GI. I don't want to go and be told nothing's wrong, why are you here...

Rachel Newbie
Rachel
Posted

Beans mum, how frustrating! I've been through your dilema and my doctor thought i was a bit of a nut lol But what I did was ask to see a dietitian. I told her my symptoms, she promptly wrote a letter and presto doctor now agrees to an endoscopy.

I don't care if the results are negative at least I know that I checked. I've been diagnosed with IBS, blood tests for celiacs were negative but they are not reliable tests.

Colonoscopy ruled out other major diseases. In my case it is probably as simple as having in tolerances but I'd rather know theres nothing major happening first before going down the elimination diet route.

Anyway good luck

ravenwoodglass Mentor
ravenwoodglass
Posted
Just to point out that you CAN have negative blood results and still have celiac disease.

My husband had neg bloods/positive biopsy.

You can also have neg bloods and biopsy and still be celiac. After you have done all the testing YOU choose to do be sure to try the diet strictly for a couple of months. Your body may give you the answer that the doctors couldn't.

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. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    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

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.