Help understanding bloodwork

[Emma84]

2 minutes ago, Russ H said:

The Mayo clinic says 2 slices of bread a day for 6-8 weeks prior to blood test and just 2 weeks prior to endoscopy. It is probably enough. I have seen testing centres recommending from 4 weeks all the way up to 12 weeks prior to blood testing.

Okay well there should at least be some damage then even if it’s not extreme 

[Russ H]

3 minutes ago, Emma84 said:

Okay well there should at least be some damage then even if it’s not extreme 

The amount to eat and for how long:

https://www.youtube.com/watch?v=byTYmgHUDEo

 

[Emma84]

20 minutes ago, Russ H said:

The amount to eat and for how long:

https://www.youtube.com/watch?v=byTYmgHUDEo

 

Thank you 

[Emma84]

On 4/25/2023 at 12:38 PM, Emma84 said:

Okay well there should at least be some damage then even if it’s not extreme 

What is this test specifically looking at (if you know?)

 

IgA w/reflex to Tissue Transglutaminase IgG Ab

 

 

On 4/25/2023 at 10:42 AM, trents said:

Yes. For instance, another bowel disease such as Crohn's. No one is saying it's definitely not celiac. Your IgG positive indicates possible celiac disease but possible other medical issues. IGG is not as specific for celiac disese as the tTG-IGA and the EMA tests.

What is this test specifically testing if you happen to know? 

 

IgA w/reflex to Tissue Transglutaminase IgG Ab

 

[trents]

31 minutes ago, Emma84 said:

What is this test specifically looking at (if you know?)

 

IgA w/reflex to Tissue Transglutaminase IgG Ab

 

 

What is this test specifically testing if you happen to know? 

 

IgA w/reflex to Tissue Transglutaminase IgG Ab

 

It isn't specifically testing for anything. "With reflex" usually means a secondary test was ordered because the primary test result was unexpected or because the physician was aware that the primary test might be inaccurate due to say, the patient having already begun a gluten free diet.

Edited April 26, 2023 by trents

[Emma84]

23 hours ago, trents said:

It isn't specifically testing for anything. "With reflex" usually means a secondary test was ordered because the primary test result was unexpected or because the physician was aware that the primary test might be inaccurate due to say, the patient having already begun a gluten free diet.

I guess I’m confused about if this is testing IgA or igG because it has both in the name 

[trents]

1 hour ago, Emma84 said:

I guess I’m confused about if this is testing IgA or igG because it has both in the name 

The IGA was run first and it's results prompted (physician to run the secondary IgG test.

[Emma84]

5 hours ago, trents said:

The IGA was run first and it's results prompted (physician to run the secondary IgG test.

So the 368 is the IGA number? 
 

if so, the cut off is 400, so while in the normal range, that definitely seems to be on the high end of normal. Is it possible I didn’t eat gluten for long enough? 

[trents]

Yes, the 368 is for total IGA and the IGG was ordered as a reflex test, probably because you were negative for the tTG-IGA (the most common and well-rounded test available) but still had celiac symptoms. IGG will sometimes catch those who actually do have celiac disease but don't throw a positive for the tTG-IGA as expected. Those alternate antibody tests are commonly used when total IGA is low because low total IGA can give a false negative for the tTG-IGA but this was not the reason in your case because your total IGA was within normal range.

What symptoms do you have?

Edited April 28, 2023 by trents

[Emma84]

11 hours ago, trents said:

Yes, the 368 is for total IGA and the IGG was ordered as a reflex test, probably because you were negative for the tTG-IGA (the most common and well-rounded test available) but still had celiac symptoms. IGG will sometimes catch those who actually do have celiac disease but don't throw a positive for the tTG-IGA as expected. Those alternate antibody tests are commonly used when total IGA is low because low total IGA can give a false negative for the tTG-IGA but this was not the reason in your case because your total IGA was within normal range.

What symptoms do you have?

Persistent GI issues that only go away when not eating gluten going back to elementary school. I seem to have severe symptoms to just small amounts (and this has been placebo tested, 3 times in the past year I was told something was gluten free, ate it, was on the floor with cramps for hours and had diarrhea, and then found out after looking closer at the ingredients that there had been something like soy sauce or worcheshire sauce in it) 

 

fatigue like sleeping 10-12 hours a day 

Unexplained overactive bladder starting in high school.

some weird bloodwork for my reproductive hormones in my mid 20s that doesn’t seem to be caused by pcos (the most common cause). Resolves once going gluten free again. 

unexplained rashes that only occur when eating gluten (although none look like DH) 

Frequently having Yellow poop when eating gluten 

unintentional weight loss when eating gluten 

 

 

as far as I can tell, only seem to have low vitamin D in terms of deficiencies though 

 

[Emma84]

11 hours ago, trents said:

Yes, the 368 is for total IGA and the IGG was ordered as a reflex test, probably because you were negative for the tTG-IGA (the most common and well-rounded test available) but still had celiac symptoms. IGG will sometimes catch those who actually do have celiac disease but don't throw a positive for the tTG-IGA as expected. Those alternate antibody tests are commonly used when total IGA is low because low total IGA can give a false negative for the tTG-IGA but this was not the reason in your case because your total IGA was within normal range.

What symptoms do you have?

And bad back and neck pain going back to high school 

[trents]

Again, it is possible you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. NCGS is 10x more common than celiac disease but shares many of the same symptoms. There is no reliable test for it yet but we sometimes see the less specific, non IGA antibody levels elevated with NCGS. Celiac disease must first be ruled out to arrive at an NCGS diagnosis. NCGS does not damage the small bowel villi like celiac disease does. Both NCGS and celiac disease have the same antidote, namely, total avoidance of gluten.

Edited April 28, 2023 by trents

[Emma84]

11 hours ago, trents said:

Yes, the 368 is for total IGA and the IGG was ordered as a reflex test, probably because you were negative for the tTG-IGA (the most common and well-rounded test available) but still had celiac symptoms. IGG will sometimes catch those who actually do have celiac disease but don't throw a positive for the tTG-IGA as expected. Those alternate antibody tests are commonly used when total IGA is low because low total IGA can give a false negative for the tTG-IGA but this was not the reason in your case because your total IGA was within normal range.

What symptoms do you have?

It’s totally possible I don’t have it, maybe more than likely given my blood work and no real deficiencies but all other bowel diseases seem like they would have a wider array of trigger foods than just gluten so that’s why I’m so confused 

2 minutes ago, trents said:

Again, it is possible you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. NCGS is 10x more common than celiac disease but shares many of the same symptoms. There is no reliable test for it yet but we sometimes see the less specific, non IGA antibody levels elevated with NCGS. Celiac disease must first be ruled out to arrive at an NCGS diagnosis. NCGS does not damage the small bowel villi like celiac disease does. Both NCGS and celiac disease have the same antidote, namely, total avoidance of gluten.

Could be! Just seems to be an intense intolerance if my body can react that much to such a small amount. I figured someone with an intolerance would be less reactive to small amounts 

[trents]

2 minutes ago, Emma84 said:

It’s totally possible I don’t have it, maybe more than likely given my blood work and no real deficiencies but all other bowel diseases seem like they would have a wider array of trigger foods than just gluten so that’s why I’m so confused 

That's another reason to consider NCGS.

[Emma84]

45 minutes ago, trents said:

That's another reason to consider NCGS.

The thing that’s confusing to me is the cross system issues I seem to have, like why is an intolerance throwing off my reproductive  hormones and my bladder? Also notice depression/anxiety/ brain fog and back pain and fatigue. Aren’t those characteristic of autoimmune issues? 

[herminia]

On 4/25/2023 at 9:04 AM, Emma84 said:

these are my results. They’re proceeding with an endoscopy. What do these mean? Am I likely to have celiac? 
 

Celiac Disease Evaluation

Deaminated Gliadin Antibody, IgA    2.4    U/mL

Deaminated Gliadin Antibody, IgG    51.9    U/mL

IgA w/reflex to Tissue Transglutaminase IgG Ab    368.00    mg/dL

Tissue Transglutaminase (TTG) Antibodies IgA    <0.5

That’s copied from the blood test results and all the Celiac tests that were done. Do these make any sense to you?

If I recall....the first TT Iga indicated gluten intolerance: numbers,  went from +3 to10, indicator for gluten intolerance. My second TT (different test) indicated allergy, after a week of indulgence, numbers much higher but nowhere near the numbers you indicated. I did experience severe stomach pain and nausea, but your numbers seem to be indicative of a major allergy. What I do know is that NOT eating wheat, barley and rye has worked for me.

[Emma84]

4 minutes ago, herminia said:

If I recall....the first TT Iga indicated gluten intolerance: numbers,  went from +3 to10, indicator for gluten intolerance. My second TT (different test) indicated allergy, after a week of indulgence, numbers much higher but nowhere near the numbers you indicated. I did experience severe stomach pain and nausea, but your numbers seem to be indicative of a major allergy. What I do know is that NOT eating wheat, barley and rye has worked for me.

I think the ranges might be different. According to my ranges, everything g is normal except for gliadin IgG which is very elevated (like 3 times elevated I think) 

[trents]

16 minutes ago, Emma84 said:

The thing that’s confusing to me is the cross system issues I seem to have, like why is an intolerance throwing off my reproductive  hormones and my bladder? Also notice depression/anxiety/ brain fog and back pain and fatigue. Aren’t those characteristic of autoimmune issues? 

As I said, NCGS and celiac disease share many of the same symptoms. We know much more about the way celiac disease affects the immune system than we do about how NCGS does. Some experts believe NCGS can be a precursor to celiac disease. What we do know is that both conditions produce collateral damage to other body systems. For instance, gluten ataxia, a neurological disorder is found in both those with celiac disease and those with NCGS. And don't assume that every health condition you experience is necessarily tied to a gluten disorder. Many people who have some of the medical issues you struggle with have neither celiac disease or NCGS.

[herminia]

On 4/25/2023 at 10:43 AM, Emma84 said:

Gotcha, thank you. 
 

 

can you help me understand the link below? The way it reads to me it sounds like the IgG being elevated is accurate 84% of the time? Unless I’m misreading this ? 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440671/

Gotcha. Celiac seems to be the only thing that makes sense, as it only appears to be gluten that causes problems and cutting out gluten seems to be the only solution.
 

anyways, I guess I’ll find out tomorrow morning. I’m so sick of pooping and sleeping all the time. Hopefully if it’s not celiac, they’ll see something else that will tell me what it is.  

Someone within these past few days posted about pain and pressure located around the left rib area radiating to the back...this happens to me on occasions for no reason. I never associated it with my celiac and would like more info if it is indeed related. I take heavy duty leftover pills for pain when it happens.