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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Surprised By Blood Tests
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8 posts in this topic

Hello Everyone,

 

I'm still in a bit of shock from hearing from my GI on Monday that she thinks I probably have Celiac.  (My blood tests are below.)  She said that it wasn't for sure and scheduled me for an endoscopic biopsy next Wednesday.  I've spent yesterday and this morning reading as much as I can about this disease, as it wasn't even on my radar at all!  I don't have any stomach or intestinal symptoms that I can tell, although I have several other health issues (massive thyroid issues, extremely low Vitamin D, bladder problems, and quite a bit of problems with mental focus). 

 

Here is my question--my doctor didn't want to stay definitvely if I have celiac or not.  She had a "let's wait for the endoscopy results" attitude, although she did refer me to a nutritionist and made sure I made an appointment for next week.  So, given the results below, is it possible that I don't have celiac?  Is the doctor just being doctor-ish by not saying I have it for sure, or is there really a chance that the biopsy could come back negative?  I've been trying to figure this out by Googling, but I'm getting more confused.  Of course, I can just wait for the results, but it's driving me a little crazy...   Since the "IGA,Serum" came back in the normal range, does that mean anything?

 

Thanks for any and all input!!!

Dee

 

P.S. - Also, if there are any questions that I should ask the doctor or the nutritionist I'd love to know.  I feel like I just don't even know enough to know what to ask yet...

 

P.P.S. - here are the results:

ANA SCREEN,IFA                              Positive
ANTI-NUCLEAR AB TITER            1:80
ANA PATTERN                                   Homogeneous
Reference Range:
       <1:40         Negative
        1:40-1:80     Low Antibody Level
        >1:80         Elevated Antibody Level

(tTG) AB, IGA                                        66
   Reference Range:
      <4 No Antibody Detected
      > OR = 4 Antibody Detected

ENDOMYSIAL AB IGA               POSITIVE
ENDOMYSIAL AB TITER          1:40
     Reference Range:    <1:5    
IGA, SERUM                                   260
     Reference Range:  81-463    mg/dL

 

 

 

 

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Well, I can't address the blood test results because I'm not an expert and I'm still have difficulty interpreting mine!  (Diagnosed in April.)

 

I went for a routine colonoscopy (over 50!!!) and the gastro thought I had celiac based on my Hashimoto's Thyroiditis that had been swinging back and forth (hyper and hypo) and iron deficiency anemia that I had for years.  Vitamin D levels were just barely in the normal range, even though I had been taking 2,000 i.u. supplement/day.  I had a bit of anxiety and mental fog issues too that I attributed to my whacked out thyroid and perimenopause symptoms.  Blood tests came back as mild celiac and six weeks later I got scoped.  Biopsies were moderate to severe damage to my villi.  

 

Leading up to the initial visit, I did not have any intestinal issues.  I was really shocked because my husband has been gluten free for 12 years (not formally diagnosed and will not do the challenge as he's happy and healthy!)  and you'd think I'd be more aware!

 

So, my advice is to eat wheat up until you prep for your endoscopy.  If you are celiac, don't panic.  It's a good thing to know.  You'll absorb your thyroid meds better, vitamins, etc.  The diet is pretty easy, but then I cooked gluten-free for my hubby for years so it was an easy conversion for me.  There's a newbie thread that's extremely helpful and will guide you cause you're going to need some new things in the kitchen (toaster, wooden spoons, etc.)

 

Good luck!

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With a positive tTG IgA and a positive EMA IgA (same positive tests that I had) there is very little doubt that you have celiac disease. The EMA IgA is 98-100% specfic to celiac disease (meaning that out of 100 positive tests, 98-100 are due to celiac) and only occurs after a significant amount of damage has been done to your intestinal villi (ie. it is negative in early celiac cases). The tTG IgA is specific to celiac in 91-99% of the time... With two positive tests, there is little doubt.

 

Total serum Iga is a control test to make sure you make adequate amounts of IgA for the celiac tests that use IgA (EMA IgA, tTG IgA, DGP IgA) to be accurate. 6% of celiacs are deficient in IgA so their tests using IgA would not catch them. A normal serum IgA is a good and normal thing.

 

Here is a link to where I got my numbers - go to p.12:  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

You might want to look on page 7 where it discusses non-classical symptoms of celiac... they really are the more common symptoms but most people don't associate symptoms like brain fog with an innocent peanut butter and jelly sandwich. KWIM?

 

Thyroid problems are extremely common in celiacs. About 6% of hashimoto's patients have celiac disease (compared with less than 1% of the regular population) and over 10% of celiacs have thyroid problems. Occassionally, thyroid problems will improve on the gluten-free diet.

 

Other tests to request are potassium, ferritin, iron, calcium, D and B's which are often low in celiacs until some time after they have healed (months to years later).

 

I am not sure if positive ANA tests are associated with celiac disease. I have "heard" it is but I have not read scientific articles stating this so I am unsure. The homogenous pattern is most often seen in Lupus but I have read that it is also the pattern that tends to show up the most in healthy people too (approx. 25% I believe) so I would not worry unless you believe you are having rheumatic problems. The speckled ANA is commonly seen in those with thyroid diseases.

 

As cyclinglady said, keep eating gluten if you think an endoscopic biopsy is something you would like to pursue (I skipped it myself but I am in the minority there). i hope you feel well soon.

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I assume you are at your scope right now...

 

Yes, and no.

 

You have two positives which are pretty strong indicators. You can get a positive TTG from having another autoimmune disease like Hashimotos. However, you have two positives...which really favors Celiac on top of Hashis (if that's your hypo problem).

 

A regular IGA just means you have sufficient IGA to register an accurate test result on other IGA based tests.

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You might want to look on page 7 where it discusses non-classical symptoms of celiac... they really are the more common symptoms but most people don't associate symptoms like brain fog with an innocent peanut butter and jelly sandwich. KWIM?

 

Thyroid problems are extremely common in celiacs. About 6% of hashimoto's patients have celiac disease (compared with less than 1% of the regular population) and over 10% of celiacs have thyroid problems. Occassionally, thyroid problems will improve on the gluten-free diet.

 

Other tests to request are potassium, ferritin, iron, calcium, D and B's which are often low in celiacs until some time after they have healed (months to years later).

 

I am not sure if positive ANA tests are associated with celiac disease. I have "heard" it is but I have not read scientific articles stating this so I am unsure. The homogenous pattern is most often seen in Lupus but I have read that it is also the pattern that tends to show up the most in healthy people too (approx. 25% I believe) so I would not worry unless you believe you are having rheumatic problems. The speckled ANA is commonly seen in those with thyroid diseases.

 

As cyclinglady said, keep eating gluten if you think an endoscopic biopsy is something you would like to pursue (I skipped it myself but I am in the minority there). i hope you feel well soon.

  The PBJ sandwich remark was the best!  Truer words were never spoken!  :lol:

 

Positive ANA can be from any number of AI diseases.  I have a very high ANA that is coming down quite nicely the longer I am gluten free.  It was in the ridiculous range.  I do not have any symptoms of anything these days but have been gluten-free for a long time....8 years.  It really is a very generic test that basically means you have a lot of inflammation in your body but it can be remedied by a strict gluten-free diet and time.

 

You have Celiac....no doubt about that.  The endoscopy will just be done to assess damage, not diagnose.  I ditched the endo because, like NVSmom, my blood work was all positives and I was too sick to have one at the time.  Welcome to our community and don't worry.....we'll help you with the learning curve!  :)

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Thank you so much for your replies!  My endo is next Wednesday (I wish it was today!), so I've got one more week of eating gluten before I stop.  Although, honestly--eating Cheerios this morning felt a little like eating poison now that I know what is going on.  Although I know it will be hard, I'm SO SO grateful to have an answer!

 

I'm also so grateful for this forum!  You all are awesome, and I'm planning on spending a lot of time reading posts over the next few weeks.

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Welcome, Withjoy

 

I hope you will get your endoscopy done and be able to go gluten free soon!  You can begin to study up and prepare your kitchen for your gluten free future.

 

Diana

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