Follow Up Testing, TTG Confusion

[sarah1130]

Relatively new celiac diagnosis here and still figuring things out. Tried to search for a similar question but couldn’t find one. Tested positive on labs in early September 2021, gluten-free since late October 2021 after scope/biopsy confirmation. 
 

Initial labs were:

TTG AB IGA 25 with a reference range of <4 = negative

EMA 1:40 with reference range <1:5 = negative 

6 mo follow up labs show EMA negative, but TTG has dropped only to 23.2. However, the reference range on this result is <15 = negative. 
 

I am assuming that the EMA negative is good news and the diet is working?

But, seeing the 25 only reduce to 23 was disheartening. I am not feeling particularly better, but continue to have other red flags that had made me think celiac just isn’t my full diagnostic picture. With TTG still elevated but EMA normalized I was thinking either liver involvement (bilirubin tests high consistently) or a dairy problem, less likely crohns. 
 

On closer inspection with the change to the reference range I’m questioning if there is significant improvement and I just need more than 6 months? I don’t know enough to know how reference ranges change meaning on tests.

 

Or does TTG staying elevated trump the normalization of EMA and I’m just getting gluten somewhere inadvertently?

[RMJ]

Good catch on noticing the different reference ranges. Numerical results from different labs can’t be compared.  The units they use are not standardized and there is no way to convert one to the other.  

In the first result your positive is six times the upper limit for normal and in the second result your positive is less than twice the upper limit.  Add in the negative EMA and I’d say congratulations, you’re doing great!

There was a similar question recently, I answered with more details about units there:

units

[trents]

But the fact that you aren't feeling better signals something else is going on. You may have an additional food intolerance. Have you had a CBC and a CMP lately?

[sarah1130]

  On 5/7/2022 at 1:30 PM, trents said:

But the fact that you aren't feeling better signals something else is going on. You may have an additional food intolerance. Have you had a CBC and a CMP lately?

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Yep. CBC is tested very regularly because I have elevated red counts - opposite of what you’d expect in newly discovered celiac. Hematology ruled out anything particularly nefarious and the official answer is just “huh, that’s weird” but we keep a close eye on it. 3 or 4 CMPs in the last 9 months including two weeks ago. Everything is always comfortably within normal ranges except bilirubin, which is always above UNL.
 

GI suggested more food intolerances were possible before running most recent labs but that he wanted to follow up in another 6 months after I had more time to heal before exploring anything further. Also suggested a zinc deficiency but again wanted to wait for more healing before supplementing. 
 

Comfortably normal on vitamin D, Iron panel + ferritin, b12, and folate. 

 

[trents]

Bilirubin is elevated. But what about AST and ALT?

Your red counts are elevated but what about the shape and size of the red blood cells (MVP and something else I can't remember). Sometimes the marrow makes more red blood cells to compensate for them not having the right shape or size, i.e., they aren't healthy.

[sarah1130]

  On 5/7/2022 at 12:13 PM, RMJ said:

Good catch on noticing the different reference ranges. Numerical results from different labs can’t be compared.  The units they use are not standardized and there is no way to convert one to the other.  

In the first result your positive is six times the upper limit for normal and in the second result your positive is less than twice the upper limit.  Add in the negative EMA and I’d say congratulations, you’re doing great!

There was a similar question recently, I answered with more details about units there:

units

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Thank you! Logic had me guessing that going from 625% of UNL to 155% was indicative of things moving in the right direction, but not all things follow logic. Compounded by the fact that this is actually the same lab running the tests and the units are U/mL for both. I don’t love my GI and he doesn’t explain much, and what he does explain takes weeks to get to me and is an actual mailed letter. Don’t want to wait weeks to take action if necessary. 

[sarah1130]

  On 5/7/2022 at 2:48 PM, trents said:

Bilirubin is elevated. But what about AST and ALT?

Your red counts are elevated but what about the shape and size of the red blood cells (MVP and something else I can't remember). Sometimes the marrow makes more red blood cells to compensate for them not having the right shape or size, i.e., they aren't healthy.

Expand Quote  

AST typically around 20, ALT around 15 - pretty dead center on reference ranges. 
 

MPV tends slightly higher end of normal. Ref range 7.5-12.5, I’m typically 11-11.5. 
 

RDW, MCV, MCH all always consistently pretty dead center on reference range. 
 

RBC is usually mid 6s, hemoglobin 17.5-18.6, hematocrit 51-55. EPO normal, jak2 negative. 

[Wheatwacked]

According to the Merck Manual, the first step in treating Celiac Disease is Gluten Free Diet and reverse any essential vitamin and mineral deficiency.

Are you eating or supplementing enough Choline? The RDA is the equivalent of 3 large eggs or 15 ounces of lean top round steak or 10 cups of cooked broccoli every day. The Tolerable upper limit would be 25 eggs a day. The liver needs choline to work properly. If the liver is not working properly, it may be unable to make bilirubin water-soluble. This may result in too much bilirubin building up in the liver. Bilirubin is the byproduct of Red Blood Cell being broken down.