Waiting in the system

[Morgan3]

Hi 

I’ve been struggling with what I thought was IBS for a couple years now. I have been seeing a naturopath and she got my blood tested for a bunch of stuff.  My tissue transglutaminase Ab IgA came back as 11.3. She said this is just under a positive result of 12.  She wants me to get a biopsy to confirm the diagnosis. I will probably be waiting months for that to happen. Should I quit gluten now while I’m waiting for my test and results? 
 

thanks
 

[trents]

To confirm what diagnosis? You do not say that the naturopath offered a diagnosis. Is she suspecting you have celiac disease even though the antibody test is negative? Or is she trying to confirm IBS? tTG-IGA is a celiac disease test.

For any current method of testing for celiac disease you need to be eating regular amounts of gluten (the equivalent amount of gluten to two slices of wheat bread daily) right up until the day of testing. To go on a gluten free diet before testing may invalidate the testing.

Edited September 25, 2021 by trents

[Morgan3]

Yes fair point, so my naturopath suspects that I have celiac and wants me to do the blood test again in addition to the biopsy. She did instruct me to eat lots of gluten the three days leading up to the test. The test is several weeks away.
 

I’m just anxious about the comment she made that the reading was so close to a positive. I was wondering if anyone here had any insight into this reading. 
 

I’m also worried that continuing to eat gluten regularly could cause further harm to my body. I don’t want to do that while I’m waiting for my biopsy if my blood test is clear enough indication. 
 

hope that helps to clarify my quandry.

[cristiana]

Hi Morgan

I live in the UK and the standard advice here appears to be to eat the equivalent of 2 slices of normal gluten containing bread every day for six weeks prior to your blood test, and to carry on until the endoscopy - in fact, one of our most recent UK posters was told to carry on after the endoscopy until she had her results back.  

Others on this site mention the same amount, but for 8 weeks.

I completely understand for some this will make them feel unwell, if not extremely unwell, but I'm afraid two to three days before a test isn't going to be nearly enough.

When you say that you may have to wait some months, if you knew it was going to be on 20th December, for example, you can work back from that time and start your "gluten trial" six to eight weeks before that.  I can understand you are worried about damaging your body but after a lifetime of eating gluten, unless it is making you feel absolutely dreadful, it is a relative drop in the ocean, so to speak.

How much gluten, out of interest, were you eating prior to your test?  Was it as much as I have described?  If it was quite a bit less, that could explain your high normal reading.

Cristiana

Edited September 25, 2021 by cristiana

[Morgan3]

Thank you

2 minutes ago, cristiana said:

Hi Morgan

I live in the UK and the standard advice here appears to be to eat the equivalent of 2 slices of normal gluten containing bread every day for six weeks prior to your blood test, and to carry on until the endoscopy - in fact, one of our most recent UK posters told us to carry on after the endoscopy until she had her results back.  

Others on this site mention the same amount, but for 8 weeks.

I completely understand for some this will make them feel unwell, if not extremely unwell, but I'm afraid two to three days before a test isn't going to be nearly enough.

When you say that you may have to wait some months, if you knew it was going to be on 20th December, for example, you can work back from that time and start your "gluten trial" six to eight weeks before that.  I can understand you are worried about damaging your body but after a lifetime of eating gluten, unless it is making you feel absolutely dreadful, it is a relative drop in the ocean, so to speak.

How much gluten, out of interest, were you eating prior to your test?  Was it as much as I have described?  If it was quite a bit less, that could explain your high normal reading.

Cristiana

Thank you Christiana that is a very helpful response. I will stick to the gluten for my blood test and my biopsy. I just really want to feel better soon!
 

I wasn’t intentionally eliminating gluten before my blood test. It’s possible I was just eating less of it for a few days but it was over a month ago so I don’t remember tbh. 

[trents]

The official guidelines for obtaining a valid blood antibody test are to consume an amount of gluten daily equivalent to two slices of wheat bread for 6-8 weeks prior to the test. Three days will not suffice. For the endoscopy/biopsy of the small bowel lining the gluten challenge time is shorter: that same amount of gluten daily for at least two weeks. If you can tolerate it, consuming gluten for the length gluten challenge time period is not likely to do permanent harm to your body.

Edited September 25, 2021 by trents

[cristiana]

50 minutes ago, Morgan3 said:

Thank you

Thank you Christiana that is a very helpful response. I will stick to the gluten for my blood test and my biopsy. I just really want to feel better soon!
 

I wasn’t intentionally eliminating gluten before my blood test. It’s possible I was just eating less of it for a few days but it was over a month ago so I don’t remember tbh. 

I don't blame you for feeling like this... when you're not feeling well it really is a "gluten trial"!   

One piece of advice - there are some tremendous gluten free substitutes in the shops these days but some real gaps in the market. In the UK, I'd love to be able to buy a gluten-free iced doughnut, for example!  And there's a particular brand of chocolate biscuit (cookie) called a Penguin which has no gluten-free equivalent that I miss so much (I hope the manufacturers are reading!)  So make sure that you include some things that you think you might miss, if you were told you could never have them again!

[Morgan3]

What do you guys think about the 11.3 test result though? My doc said it’s usually either very low (0.5) or above 12. 

[trents]

12 minutes ago, Morgan3 said:

What do you guys think about the 11.3 test result though? My doc said it’s usually either very low (0.5) or above 12. 

It's borderline and deserves further investigation. My guess is it would have been more strongly positive had you been eating good amounts of gluten for a longer time leading up to the test.

[cristiana]

Hello Morgan

I agree with Trents.  You have an observant doctor - a reading like this could so easily have been missed.  Whichever way you look at it, considering you have IBS like symptoms it is worth ruling celiac disease out.  All too often gastric symptoms are dismissed as IBS - it is really good your doctor looking into this.

[Morgan3]

Thanks everyone! I’ll keep you posted when I have some more results back 😊

[Scott Adams]

3 hours ago, Morgan3 said:

What do you guys think about the 11.3 test result though? My doc said it’s usually either very low (0.5) or above 12. 

I and other doctors like Dr. Kenneth Fine and Dr. Rodney Ford, have always believed those with elevated antibodies are actually in a pre-celiac stage (some call it non-celiac gluten sensitivity, although elevated antibodies are not required for someone to have NCGS), and that should you keep eating gluten you'll likely end up with full blown celiac disease and villi damage (if you don't already have this).

Your naturopath, in my opinion, is doing a great job by not dismissing your results out of hand and simply doing what most doctors do in this case, which is to day: "your test was negative, your fine, you can keep eating gluten!"

You might find this study interesting: