Fluctuating TTG IGA despite gluten free diet

[EmilyJ93]

Hello,

When I was diagnosed via endoscopy in late December 2021 my TTG IGA was >100. I started my gluten-free diet in January 2022 and in August 2022 my TTG IGA was down to 32, which my GI doc was very please with. I just had it checked again and the result was >250!! My GI is very confused as I am very strict about my compliance, have a completely gluten-free home, and rarely eat out at restaurants. She ran a bunch of liver function/autoimmune liver bloodwork and checked my TSH and all came back normal. My A1C was normal in March 2022 but hasn’t been checked since then. My blood glucose was just checked and was in normal range at 84. In December 2021 when I was first diagnosed my Deamidated Gliadin IGA was positive at 60, but is now negative at 7. My GI reached out to Dr. Green (Columbia Celiac Center) to get his advice but hasn’t heard back yet. Has anyone ever experienced something similar? I am hesitant to undergo another invasive endoscopy until I have exhausted all other possibilities. I found on the Celiac Center website that you can have elevated TTg IGA despite a gluten free diet if you have another liver/thyroid autoimmune issue or have type 1 diabetes, or develop a cow’s milk protein allergy? Curious if anyone here has experienced an elevated TTG IGA for reasons other than gluten ingestion.

[CeliacMom57]

Hi,

My daughter was diagnosed with Celiac 3 years ago, when she was 16. We eliminated gluten from her diet. While some symptoms resolved; she battles with constant nausea and bloating. Our whole family went gluten-free, then moved on to follow the Paleo diet (grain free) to rule out issues with possible cross-contamination. I purchased new cookware; scoured plates and utensils with steel wool--there is no gluten in our house.

Repeat endoscopy and lab work at the 1 year mark showed completely healed villi; but TTG still elevated (don't have the exact number at the moment; but down only slightly from diagnosis time)

Thyroid tests are normal; she has eliminated all dairy, eggs, all grains except rice from her diet.  She never eats out (she is now 20 years old). She is strict with eliminating gluten; even cosmetics, shampoos, soaps, etc are scrutinized.

She has since developed orthostatic hypotension and is looking into the possibility of POTS (TTG can be elevated in POTS).

 

 

[shadycharacter]

23 hours ago, EmilyJ93 said:

Hello,

When I was diagnosed via endoscopy in late December 2021 my TTG IGA was >100. I started my gluten-free diet in January 2022 and in August 2022 my TTG IGA was down to 32, which my GI doc was very please with. I just had it checked again and the result was >250!! My GI is very confused as I am very strict about my compliance, have a completely gluten-free home, and rarely eat out at restaurants. She ran a bunch of liver function/autoimmune liver bloodwork and checked my TSH and all came back normal. My A1C was normal in March 2022 but hasn’t been checked since then. My blood glucose was just checked and was in normal range at 84. In December 2021 when I was first diagnosed my Deamidated Gliadin IGA was positive at 60, but is now negative at 7. My GI reached out to Dr. Green (Columbia Celiac Center) to get his advice but hasn’t heard back yet. Has anyone ever experienced something similar? I am hesitant to undergo another invasive endoscopy until I have exhausted all other possibilities. I found on the Celiac Center website that you can have elevated TTg IGA despite a gluten free diet if you have another liver/thyroid autoimmune issue or have type 1 diabetes, or develop a cow’s milk protein allergy? Curious if anyone here has experienced an elevated TTG IGA for reasons other than gluten ingestion.

Stupid question perhaps, but have you checked that the same units were used for all the results? It's always a good idea to include the units when reporting the numerical values.

[EmilyJ93]

@shadycharactergood question! Yes - I just doubled checked and they were all units/ML. Most of my blood work has been done through LabCorp, although the >200 TTG IGA blood draw was done at a Quest Diagnostics lab.  LabCorp considers >10 a positive result, while Quest considers >15 a positive, but that’s the only difference between the two as far as I can gel. 

[EmilyJ93]

@CeliacMom57 I’m so sorry to hear about your daughter’s continuous symptoms - I can’t imagine how frustrating that is  Thinking of you both! Does the doctor seem concerned by the elevated TTG since her villi have healed? 

[Hypo]

Is it possible that you were glutened recently so they went up? Maybe if you recheck soon, they will be down again?

[EmilyJ93]

2 hours ago, Hypo said:

Is it possible that you were glutened recently so they went up? Maybe if you recheck soon, they will be down again?

I wondered the same. It’s possible I was glutened at a restaurant recently. I don’t really have celiac symptoms, so it’s hard to know if/when I’m glutened. I asked my doctor if it’s possible for my TTG IGA to go up that high from consuming a gluten bun if I was recently served one on accident at a restaurant or something. She seemed to think that a number this high was indicative of frequent consumption of large amounts of gluten, and we both know that’s not possible since I mainly cook at home and have no gluten in my home. I recently returned to the office three days a week and as a result have been getting food from restaurants a couple  times a week, but she didn’t seem to think a result of >250 would be simply due to occasional small amounts of gluten from restaurant cross contact. 

[RMJ]

On 3/8/2023 at 10:05 AM, EmilyJ93 said:

@shadycharactergood question! Yes - I just doubled checked and they were all units/ML. Most of my blood work has been done through LabCorp, although the >200 TTG IGA blood draw was done at a Quest Diagnostics lab.  LabCorp considers >10 a positive result, while Quest considers >15 a positive, but that’s the only difference between the two as far as I can gel. 

Those units are not the same. The test manufacturers assign arbitrary units for these celiac tests so a LabCorp unit is not the same absolute amount as a Quest unit.  It would be best to stick with one lab.  Still, going from 32 (with positive >10) to >200 (with positive >15) is probably a significant increase. You may want to be retested at LabCorp.