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Blood Test Results

TruePrep

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TruePrep Newbie
TruePrep
Posted

I got the results back from my celiac blood screen...

 

Immunoglobulin A:  226

 

Tissue Transglutaminase Antibody IgA: <1

<4 No antibody detected

> or = 4 Antibody Detected

 

So my doctor said it came back "completely negative" but as far as I can see they performed ONE antibody test? So frustrating, as I would like to have a complete blood panel done and now I will have to continue this process. 

 

Any insights as to what these numbers are/mean and what my next step is would be greatly appreciated :) 

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heliosue Apprentice
heliosue
Posted

You'll find others on this forum who know and understand a whole lot more about the blood test results than I do, however, I had a full Celiac panel done and my only positive was the TTG, IgG test which came back as a strong positive.  There are definely other blood tests that would be helpful in making a realistic diagnosis.

TruePrep Newbie
TruePrep
Posted
  • Author

Thanks, that's what I thought... I actually just  got an appointment to see a gastroenterologist TODAY, so I am brining a copy of my results and I'm going to request a FULL blood screen. Any other questions I should ask or things I should know before I go??

cyclinglady Grand Master
cyclinglady
Posted

Try to get the full screen. Remember, I tested positive on the DPG IGA test only and negative on all the rest yet my biopsies revealed severe intestinal damage. Plus, you need to be eating gluten for 8 to 12 weeks. I recall that you had been gluten-free for a while and then only ate gluten for two weeks prior to the blood test. That can be an issue too.

Best of luck!

TruePrep Newbie
TruePrep
Posted
  • Author

Thank you very much; I plan to request the full blood screen... Fortunately, this doctor is listed on the Celiac Disease Foundation website so I am *hoping* he knows what to do and what the proper protocol is for testing & diagnosis  :rolleyes:

 

I will keep you posted!

nvsmom Community Regular
nvsmom
Posted

Good luck!  Many labs and doctors will only do the tTG IgA test, my doctor being one of them   :rolleyes:   I hope you find answers.

TruePrep Newbie
TruePrep
Posted
  • Author

Well, I just got back from the gastroenterologist and it went really well... He ordered a Celiac Plus panel from Prometheus Labs that tests for all the antibodies (it lists: tTG IgA recombinant antigen, EMA IgA, total serum IgA, DGP IgA, DGP IgG) and also includes genetic testing (HLA DQ2/DQ8) so I'm pretty happy! :) I think that's pretty much all you can test for, right?

 

He said to wait a few more weeks before taking the tests since I was on a fairly low gluten diet before. I am 3 week into my gluten challenge so perhaps I will wait another 3 weeks before getting this bloodwork because I want it to be as accurate as possible. 

 

This certainly isn't a fast or easy process, but I am happy to be able to thoroughly investigate this and eventually know where I stand either way...

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nvsmom Community Regular
nvsmom
Posted

That sounds really good!  :)  I hope the last few weeks of gluten aren't too hard on you.

TruePrep Newbie
TruePrep
Posted
  • Author

Thank you! Now that I got the full panel ordered, I am obsessing about how long to continue my gluten challenge before getting tested... lol

 

I was not on a gluten-free diet before, but it was somewhat gluten-lite. I am so anxious to get the results, but I want to make sure they are accurate so I think I will aim for 6-8 weeks of this gluten challenge. I'm 3 weeks in already, and I feel better than I did initially when I was going really gluten-heavy. Now I'm just aiming for about 2 slices of bread daily which isn't nearly as bad. The waiting will be the hardest part...  :D

nvsmom Community Regular
nvsmom
Posted

LOL  Waiting is, most definitely, one of the hardest parts about getting a diagnosis. ;)

jbeilfuss Newbie
jbeilfuss
Posted

That's awesome that your GI doc ordered the complete panel - glad for you.  I'm still new here too and not officially diagnosed.  I did have two positive blood tests though and have my biopsy this Thursday.  I had gone gluten free for almost two weeks prior to the blood testing so my GI doc wanted me to do an 8 week challenge (ugh! it's been rough a few days).  I have chronicled some of what I have done over the past 8 weeks to prepare for this Thursday on my original thread here from February if you want to check out one newbie's experience.  I'll post more after the endoscopy and once I get the results.

 

Good luck!

TruePrep Newbie
TruePrep
Posted
  • Author

I will check out that thread, thanks jbeilfuss! I (think) I have decided to do 8 weeks of gluten challenge before getting my blood draw. 12 weeks just seems like an eternity, and I was not completely gluten free before so I'm thinking 8 weeks of daily consumption may be enough? I am just wanting to move the process along but I also don't want to have any doubts about the accuracy of the tests, so I change my mind daily about when to take the tests... lol In the meantime I will keep eating my sandwiches and perusing this forum :) 

frieze Community Regular
frieze
Posted

i would say your doc is a keeper.

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  • Posts

    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
      Potential celiac need advice

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    • Wends
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      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
    • cristiana
      How Come Gluten Didnt Bother Me In Italy

      By cristiana · Posted

      @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?        
    • deanna1ynne
      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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