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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.