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Confused About Test Results
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4 posts in this topic

I've been experiencing some Celiac-like symptoms for a while now and could use some help making sense of these test results.

 

Some history:

 

I had a partial thyroidectomy 13 years ago (benign Follicular Adenoma).  I take Synthroid 112 mcg daily.  About 3 years ago, I starting experiencing hair loss, which my doctor attributed this to my throid and increased my synthroid.  Then, I starting having numbness in my feet.  My endo was concerned and ran what seemed like a million tests to discover that I was Vitamin B12 deficient.  She told me to take OTC megadoses and then retested me to find I was still deficient.  She prescribed B12 injections.  The B12 seems to have stabilized, but still isn't ideal.  Then, she tested my Vitamin D and found I was severally deficient there.  OTC prescribed with no improvement.  Prescription Vitamin D (50,000 Iu) every 7 days and then retested.  I was still deficient and now my calcium was dangerously low, probably due to low D.  Continued with the Vitamin D megadoses and then retested-both D and Calcium dangerously low and now my TSH is out of whack.  The endo had me increase the D to 50,000 Iu every 5 days and add 600 mg of Calcium every night.  She said she won't increase my Synthroid because she doesn't think I'm absorbing it and then referred me to a GI.

 

I meet with the Gi who asks me about other symptoms.  I report heartburn, flipping between consitpation and diarrhea, gas and bloating...He orders the blood test below and schedules an EGD.

 

Immunoglobulin A, Qn, Serum
87 mg/dL (70-400)

 

Deamidated Gliadin Abs, IgA
2 units (0-19)
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

 

Deamidated Gliadin Abs, IgG
3 units (0-19)
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

 

t-Transglutaminase (tTG) IgA
<2 U/mL (0-3)
Negative 0 - 3
Weak Positive 4 - 10
Positive >10

t-Transglutaminase (tTG) IgG
<2 U/mL (0-5)
Negative 0 - 5
Weak Positive 6 - 9
Positive >9

 

Endomysial IgA  Negative

 

After the EGD, the GI tells me that I have esophagitis and a gastric ulcer.  They pulled tissue samples for a biopsy.  He started me on a PPI to heal the ulcer.  I heard from the nurse practitioner today, my biopsy results show lympohcytes indicative of early Celiac Disease but I have negative blood tests.  I return to the doctor this Wednesday.

 

Does anyone have any idea what this means?

   

 

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just what the NP said, early celiac.  Now, get yourself some Vitamin D3 at the grocery/vitamin store and take the same dose of that, that the doc prescribed.  Now, the B12, try finding the methyl- form, there are a few stores now carrying, if you don't find it, try on line.  A little sun every day is good as well.  good luck

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There are a few board members who had negative blood tests and a positive biopsy - that means it is celiac. For whatever reason, there was not enough autoantibodies in your blood to show up on the test, but you have the intestinal damage (which is what the tTG's EMA, and DGP's all test for).  Early cases of celiac disease often are serologically negative, that's why kids have a difficult time getting diagnosed - they haven't built up enough autoantibodies yet.

 

Low nutrient levels are a classic sign of celiac disease. You might want to take sublingual D and B since your intestines may not be properly absorbing it.

 

Good luck with your appointment. if for some reason the doctor says you don't have celiac (some docs want every test positive and all the planets and stars to align before they will diagnose) please try the gluten-free diet for a good 6 months. It takes a few a months for some symptoms to start improving.  Best wishes.

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Thanks for your help!  The GI said that because my villia are technically fine, in the absence of positive blood work he can't diagnose Celiac.  But, the vitamin deficiencies and intestinal symptoms were concerning to him.  His exact words were, "I may not be able to diagnose you, but if you were my daughter I would advise you to go gluten free."  What he's hoping is that a gluten free diet will help with the vitamin absorption.  He said he'll retest me again in a few months.

 

Now, to talk to the Endo about that Synthroid (which they apparently can't guarantee is gluten free)...

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
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    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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