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New With Borderline Test Results, Opinions?

skelly247

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skelly247 Rookie
skelly247
Posted

I've had problems with bloating and constipation for awhile and after a friend was diagnosed with celiac disease after having similar symptoms, I figured I would ask my doctor to run the blood test for me.  I had been gluten free for about 2 months and then went back to eating gluten about 3 weeks before my appointment (my doctor said that I didn't have to go back onto gluten for the test at all which makes me doubt his analysis of my results).  Here are my results:

Immunoglobulin A Serum- 83 mg/dl, (normal range 91-414)

Deamidated Gliadin IgA- 6 units, (negative 0-19, weak positive 20-30, moderate/strong positive 30+)

Deamidated Gliadin IgG- 18 units (negative 0-19, weak positive 20-30, moderate/strong positive 30+)

T-Tissue Transglutaminase IgA- 3 u/mL (negative 0-3, weak positive 4-10, positve 10+)

T-Tissues Transglutaminase IgG- 2 u/mL (negative 0-5, weak positive 6-9, positive 10+)

Along with that, he ran a metabolic panel.  Everything came back in the normal range but a few things were at the very low end of normal and those are all metabolites that are lowered with malnutrition. 

Also, my Vitamin D levels are through the floor, the normal range was 30-100 with insufficiency from 20-30 and deficiency below 20.  I was at 7.8, so I now get to take 50,000 IU of vitamin D once a week to get my levels back into something in the range of normal. 

 

 

Since I am IgA deficient, I feel like the tTg IgA would have come back as a positive had my serum IgA been okay and my Deamidated Gliadin IgG was almost in the positive range as well.  That together with a severe deficiency of 1 of the 2 vitamins he tested for (the other was B12 which was fine) makes me think he was wrong when he told me my celiac test was totally negative.  

That all being, said, is it really worth pursuing an "official" diagnosis? (The only time I've been under anesthesia it took twice as long as it was supposed to for me to wake up so I refuse to get an endoscopy)

 

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.

I agree with your analysis of your results. Being IgA deficient will almost always cause false negatives in the IgA based tests among celiacs. Yours are borderline positive after eating gluten only three weeks - I would rate that highly suspicious! If you completed a full gluten challenge (2 months) I am guessing that your results would be higher.... As for should you do that? I don't know, that's up to you. For some an official diagnosis is helpful but others find they get along fine without it.

Are you willing to go gluten-free based on those results? If not, you should do more testing. If so, continue gluten-free and just have your other nutrients checked. B12, D, A, K, Fe, Ca, ferritin, zinc and Cu are often low in celiacs.

Best wishes.

frieze Community Regular
frieze
Posted

what Vitamin D are you taking? you want Vitamin D3 not 2, good luck.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

If your doctor told you that you didn't need to be eating gluten - after being gluten-free for 2 months - then you may want to consider either 1) educating your doctor or 2) finding a new one.  Or both.  FWIW... the whole "weak positive" thing from the labs I also find ridiculous... it's like saying you're weakly pregnant.  I agree with nvsmom - if you have these numbers after being gluten-free for 2 months and then only eating it again for a few weeks, your numbers would most likely be higher had you been on a full gluten diet (or gluten challenge).  Chances are pretty good that you have Celiac.

 

If you can stand continuing to eat gluten, you could request an endoscopy with biopsy.  You only need to be eating gluten for a few weeks for that.  However... the damage can be spotty so there is always a chance of a false negative there too.  (And you're relying on the doctor knowing enough about Celiac to do the biopsy correctly - and to take several biopsies, not just one or two.)  One advantage to getting a biopsy is that they will look around and test for other things that could possibly be causing your symptoms.

 

Otherwise, you could try going completely gluten-free and see if you feel better.  If after a few months you eat something with gluten in it and it affects you, then you'll know for sure that you either have Celiac or non-Celiac gluten intolerance - the end result for either is the same - 100% gluten-free for life.

 

Good luck!

skelly247 Rookie
skelly247
Posted
  • Author

Thank you guys! I have no problems going gluten free with the results that I have, I feel so much better without it (no bloating, no stomach discomfort/problems, plus I don't feel completely exhausted all the time).  When I went back onto gluten for my blood test, I got crippling stomach pains for the first few days that slowly subsided into just discomfort.  My only worry is that people will think I am gluten free because it's the new "thing" to be and won't take me seriously when I say I can't have gluten.  

 

As for the question about D3 or D2, I think my doctor gave me a prescription for high dose D2, not D3.  Everything I've read claims that they are equivalent, what about supplementing with D3 makes it better than D2? 

nvsmom Community Regular
nvsmom
Posted

 My only worry is that people will think I am gluten free because it's the new "thing" to be and won't take me seriously when I say I can't have gluten.  

 

LOL People are going to say that about you even with a celiac diagnosis... trust me.  ;) But you'll get used to it and educate those close to you... no worries.  :)

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

Hi Skelly247!

 

I went into my first GI appointment with a whole list of symptoms and when he asked what my main ones were, bloating and constipation were the winners   :)  Those two suck the life out of me.

 

I bet if you were on gluten awhile longer, the DGP IgG would have been even higher especially since you're IgA deficient.  Did the doctor give you any reason for why your Vit D is so low?  It seems celiac is the reason, but I'd be interested to see if he/she was able to give you a good answer or a run around.

 

With regards to people being skeptical, the longer I've been gluten-free (today marks my 11th month!!) the more I've gained back my confidence and happiness and people have taken notice.  I'm fair skinned, but if you look at my school pictures from last year and this year, I teach elementary school, I finally have my coloring back and don't look so ghost-like.  I had a co-worker comment on that difference a few weeks ago. 

 

Whatever path you decide, gluten challenge or not, if you need any specifics about the DGP IgG test, ask me  :) I've spent the last year researching it because it was the only test on the celiac panel I tested positive on, but I am not IgA deficient.  

 

Welcome to the forum!

 

I've had problems with bloating and constipation for awhile and after a friend was diagnosed with celiac disease after having similar symptoms, I figured I would ask my doctor to run the blood test for me. 

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skelly247 Rookie
skelly247
Posted
  • Author

My doctor didn't give me any reason for why my vitamin d levels are so low, he just said they are obscenely low and you need to get them up with 3 months of once a week megadoses of vitamin d (a loading dose).  After the 3 months, I'll get my vitamin d levels retested to see if I can move to a maintenance dose that's closer to the daily recommended dose and if they haven't gone up, it would signify an absorption issue.

 

He does seem to acknowledge that he isn't really sure what's going on, he dismissed the almost positive results and just said "I tested you and all of it came back negative so it's not sprue" and then gave me a referral for a gastroenterolgist if I wanted to go further with tests.  Honestly, I know I feel a lot better without gluten, I just was looking for a positive test so I could definitively say "This is the problem and it's not all in my head".  My results are good enough for me, they're borderline positive on 2 tests, one of them being artificially low because I am IgA deficient (which I've at least read appears to be more common in celiacs?) and I'm severely vitamin D deficient which is also associated with untreated celiac disease from what I've read.  I'm really glad that others agree with my analysis and that it's not just me analyzing things until they show what I think they should show  ^_^

frieze Community Regular
frieze
Posted

D3 is what the body makes in response to the sun on skin......D2 is plant based.

skelly247 Rookie
skelly247
Posted
  • Author

Frieze.  That's true but D3 and D2 are vitamin D precursors that both get processed in the liver to form calcidiol (25-hydroxy vitamin D, what the vitamin D test actually looks for) and then that gets processed in the kidneys to form both 1,25 dihydroxy vitamin D (the active form) and 24,25 dihydroxy vitamin D.  Since the active form of vitamin D can be made by either D2 or D3, they are considered analogous in terms of treating vitamin D deficiency.  Is there evidence that D2 isn't as efficiently turned onto calcidiol (I honestly want to know, I haven't found much to support that but there isn't much research done on it either)?  

Sorry for diving into the chemistry of it, I'm a PhD student in molecular biology so the science behind things is what I turn to.  

nvsmom Community Regular
nvsmom
Posted

My doctor didn't give me any reason for why my vitamin d levels are so low, he just said they are obscenely low and you need to get them up with 3 months of once a week megadoses of vitamin d (a loading dose).  After the 3 months, I'll get my vitamin d levels retested to see if I can move to a maintenance dose that's closer to the daily recommended dose and if they haven't gone up, it would signify an absorption issue.

 

He does seem to acknowledge that he isn't really sure what's going on, he dismissed the almost positive results and just said "I tested you and all of it came back negative so it's not sprue" and then gave me a referral for a gastroenterolgist if I wanted to go further with tests.  Honestly, I know I feel a lot better without gluten, I just was looking for a positive test so I could definitively say "This is the problem and it's not all in my head".  My results are good enough for me, they're borderline positive on 2 tests, one of them being artificially low because I am IgA deficient (which I've at least read appears to be more common in celiacs?) and I'm severely vitamin D deficient which is also associated with untreated celiac disease from what I've read.  I'm really glad that others agree with my analysis and that it's not just me analyzing things until they show what I think they should show  ^_^

 

Yes, IgA deficiency is found in 1/20 celiacs which is higher than the regular population. You're right on that.

 

With borderline tests, after being gluten free and not having an adequate gluten challenge, and with your low IgA levels (affecting some tests), I think it's celiac. You doctor is just too black and white in his thinking; there's a lot of grey to consider there. If you test results were just one point higher, it doesn't suddenly mean that your celiac disease was activated. It would have bee just marginally higher in antibody amounts to get a positive result.

 

Best wishes

frieze Community Regular
frieze
Posted

I can't seem to copy/paste from pubmed      ..Vitamin D(3) is more potent than Vitamin D(2) in humans   clinical endocrinology  2011 march

sorry I couldn't get it to work.... 

anand Newbie
anand
Posted

u can do a gene test.. hla dq testing and see if you have a high probability gene for celiac or the gene... if u havene gone gluten free, u can get tested at enterolab, where there do a fecal test

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kareng Grand Master
kareng
Posted

u can do a gene test.. hla dq testing and see if you have a high probability gene for celiac or the gene... if u havene gone gluten free, u can get tested at enterolab, where there do a fecal test

Open Original Shared Link

 

 

Enterolabs' stool test  is not considered a valid test for Celiac.

 

Open Original Shared Link  

 

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

 

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support."

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