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Test Results--Confused

StClair

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StClair Apprentice
StClair
Posted

Five weeks post-diagnosis and my doctor ran some tests. No h pylori, thank goodness, but according to my online chart two blood tests came out with concerning results. I've asked for clarification, but no response yet. My Vitamin B-12 is abnormally high, 1222, and my Alanine Aminotransferase is 33. The maximum numbers for this one are controversial, according to the report, and some labs consider it to be as low as 19. Both of these values, according to my online searching, *may* indicate some problem with the liver. Today I received a call telling me to make an appointment with Digestive Diseases for hydrogen breath testing for fructose, glucose and lactose. I'm wondering if this has anything to do with the test results. Waiting to hear from my doctor.

Does any of this sound familiar to anyone? Have others had similar results at this stage in the healing process? Thanks in advance for any comments.

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ravenwoodglass Mentor
ravenwoodglass
Posted

It isn't unusual for some of us to have liver impact from undiagnosed celiac. If that is what is causing the elevation in your tests it should resolve after you have been gluten free for a while. 

cyclinglady Grand Master
cyclinglady
Posted

I have really high B-12 levels (2,000+) and folate too. I freaked, but my docs have not. Because I have kept records for 20 years, I found that they have always been high. I do not have cancer or liver disease. I did some research and found that I probably have a methylation problem (thanks, Dad!). So, I make sure that I do not take any additonal B12 in supplements (vitamins, soymilk, etc.). My levels have gone down but are still high. (I was surprised at how much b12 is added to processed food and my soymilk brand was full of them but I found a brand that adds nothing to the soymilk.).

If you take supplements, consider methylated sublingual ones. You could still be considered deficient. Depends on your symptoms (I had tingly legs which has resolved).

Raven is right about liver issues often resolving once healed. Celiac disease impacts so many areas of the body!

StClair Apprentice
StClair
Posted
  • Author

I don't know what I would do without you guys! Thanks for the replies. Even though my doctor has not responded, I feel much reassured now, thanks to you. I'm not scheduled for the hydrogen breath testing for another month, but I guess I can wait until then to get an official word on these test results. Hoping of course to be feeling better by then, at the 2 1/2 month mark. One reason I was worried is that I have a close friend with autoimmune hepatitis. She's beating the odds so far, but it's a scary disease. Grateful to have so much control in our situation--we can choose to not ingest gluten. Really wish it was as straightforward for her.

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad we are being helpful. It wouldn't hurt to urge your friend to get tested for celiac even if she doesn't have any symptoms that she thinks could be celiac symptoms. You never know if she might be a 'silent' celiac and it wouldn't hurt to rule it out. 

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    • Wends
      Blood results

      By Wends · Posted

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    • cristiana
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      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
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      Inconclusive results

      By deanna1ynne · Posted

      Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. Doc said we could biopsy in another six weeks because my daughter was actually way more upset than I anticipated about the idea of eating it for years before doing another biopsy. It doesn’t hurt her, but she’s afraid of how it may be hurting her in ways she can’t feel. She’s currently eating mini wheats for breakfast, a sandwich with lunch, and a side of pasta along with every dinner, so I’m hoping we’re meeting that 10g benchmark mentioned in that second article!
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