Help! Test Results...

[beansmom]

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 . 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!!

[leadmeastray88]

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]

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]

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

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]

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]

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

[beansmom]

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.

[Gemini]

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]

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]

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

My husband had neg bloods/positive biopsy.

[beansmom]

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]

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]

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.