Hi, new to the forum and have a question

[Madame Marigold]

Hi, I have a quick question about what "equivocal" means in  the TTG and Gliadin part of the Celiac blood test? I haven't heard from the doctor yet (it will probably be next week before he has time to call) but my symptoms are:

stomach pain, bloating, stomachache whether I eat or not, the right side of my colon swells up? (seen via x-ray), severe diarrhea often when I eat,  extreme fatigue, vertigo? I also have M.S. and take medicine for low thyroid. I know the neurologist said my brain was "buffering"? was how he explained it. If there is something around me I can walk with a cane short distances... but if it is a open area? I freeze totally and cannot move AT ALL, and immediately vertigo sets in but have had it sometimes while sitting in my wheelchair! And also have anxiety attacks and get cold easily. Oh, and I was born with a heart defect and have had a pacemaker since I was 17.

Before I took the test I had fasted for 48hrs. With the M.S. I don't walk well or fast enough and have very little muscle control so there is only so much Imodium I can take and I still don't feel safe enough to eat before leaving the house to go into town to the docs. I know the doctor will call but am just very curious. Thanks for any info given,  anything at all will be very appreciated. Kim

 

 

 

 

[trents]

5 minutes ago, Madame Marigold said:

Hi, I have a quick question about what "equivocal" means in  the TTG and Gliadin part of the Celiac blood test? I haven't heard from the doctor yet (it will probably be next week before he has time to call) but my symptoms are:

stomach pain, bloating, stomachache whether I eat or not, the right side of my colon swells up? (seen via x-ray), severe diarrhea often when I eat,  extreme fatigue, vertigo? I also have M.S. and take medicine for low thyroid. I know the neurologist said my brain was "buffering"? was how he explained it. If there is something around me I can walk with a cane short distances... but if it is a open area? I freeze totally and cannot move AT ALL, and immediately vertigo sets in but have had it sometimes while sitting in my wheelchair! And also have anxiety attacks and get cold easily. Oh, and I was born with a heart defect and have had a pacemaker since I was 17.

Before I took the test I had fasted for 48hrs. With the M.S. I don't walk well or fast enough and have very little muscle control so there is only so much Imodium I can take and I still don't feel safe enough to eat before leaving the house to go into town to the docs. I know the doctor will call but am just very curious. Thanks for any info given,  anything at all will be very appreciated. Kim

 

 

 

 

Welcome to the forum, Kim!

Equivocal means the test results would be marginally positive as opposed to strongly or clearly positive. Do you have access to the details of the test results yet, as in do you have a hard copy or can you view them online? There are a number of tests that can be run to specifically check for celiac disease and "TTG" and "Gliadin" are kind of vague. A "full celiac panel" is valuable in that what one test can miss, another can find.

Many of your symptoms point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). NCGS is 10x more common than celiac disease and the two share many symptoms. Unfortunately, there is not a definitive test yet for NCGS so celiac disease must first be ruled out. There is a statistical correlation between celiac disease and MS as there are with a number of other autoimmune diseases including Hashimoto's thyroid.

[Madame Marigold]

48 minutes ago, trents said:

Welcome to the forum, Kim!

Equivocal means the test results would be marginally positive as opposed to strongly or clearly positive. Do you have access to the details of the test results yet, as in do you have a hard copy or can you view them online?

H! Thank you for the quick response, the chart that I was sent to look at showed: IgA-173 mg., TTG-IgA--0.4, and Gliadin-IgA--0.9

But both of those last 2 said they were the ones listed as "equivocal".  All of their other tests they have done over the years have shown no reason for the stomach pain or the horrific diarrhea problems.  (I keep Imodium bottles but the box full. )

But I am overweight so no one ever considered it could possibly be. Anyway, once again thank you so much, am off to dig and read through the threads hopefully learn some things! Have a great weekend coming up.   😁                                                       

[trents]

It is a misconception that people with celiac disease will necessarily be underweight. Actually, some celiacs eat more to make up for the poor utilization of vitamins and minerals from the damage done to the small bowel villi and therefore consume more calories, leading to weight gain. But the much of the medical community is woefully uninformed about gluten-related disorders and the information they do have is severely outdated. 

I wish your physician had ordered more antibody tests but the ones he/she did order do not suggest you have celiac disease. Here is a primer about celiac antibody tests: 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Also, when you post the test numbers it may not be meaningful unless you also post the reference ranges for each test, since different labs used different standards for what is negative vs. what is positive.

I would look at NCGS. By the way, had you already begun a gluten free diet before the testing was done? If so, you likely invalidated the testing.

And have you trialed a gluten free diet to see if symptoms improve?

[Madame Marigold]

On 9/23/2022 at 3:32 PM, trents said:

"It is a misconception that people with celiac disease will necessarily be underweight. Actually, some celiacs eat more to make up for the poor utilization of vitamins and minerals from the damage done to the small bowel villi and therefore consume more calories, leading to weight gain. But the much of the medical community is woefully uninformed about gluten-related disorders and the information they do have is severely outdated. 

I wish your physician had ordered more antibody tests but the ones he/she did order do not suggest you have celiac disease. Here is a primer about celiac antibody tests: 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Also, when you post the test numbers it may not be meaningful unless you also post the reference ranges for each test, since different labs used different standards for what is negative vs. what is positive.

I would look at NCGS. By the way, had you already begun a gluten free diet before the testing was done? If so, you likely invalidated the testing.

And have you trialed a gluten free diet to see if symptoms improve?"

No, I haven't started a gluten free diet yet, but like you mentioned if it is NCGS a gluten free diet should help certainly can't hurt, so am starting to take notes so I am def. going to start one anyway. I always knew I was a carb addict, as was my family so that was the cooking I knew so it is time to break the cycle. Will read the primer you provided and read some more info as well. Thank you so much for the quick response!

[trents]

Eating gluten free is not as simple as people imagine it to be at the outset since gluten can be hidden and disguised in so many ways in processed foods or through CC (Cross Contamination, i.e. when gluten-free food comes into contact with gluten containing food). This might help: 

 

[Maddie6332]

On 9/23/2022 at 7:03 PM, trents said:

Eating gluten free is not as simple as people imagine it to be at the outset since gluten can be hidden and disguised in so many ways in processed foods or through CC (Cross Contamination, i.e. when gluten-free food comes into contact with gluten containing food). This might help: 

 

I definitely agree here! As you said, a Gluten Free diet is really hard to manage, and I was little when I had to start eating gluten free, so when I couldn't get my favorite thing anymore, it was truly very difficult for me to understand. But, once you get the hang of it and you really commt, you'll be a gluten free pro! I promise you!

On 9/23/2022 at 6:32 PM, trents said:

It is a misconception that people with celiac disease will necessarily be underweight. Actually, some celiacs eat more to make up for the poor utilization of vitamins and minerals from the damage done to the small bowel villi and therefore consume more calories, leading to weight gain. But the much of the medical community is woefully uninformed about gluten-related disorders and the information they do have is severely outdated. 

I wish your physician had ordered more antibody tests but the ones he/she did order do not suggest you have celiac disease. Here is a primer about celiac antibody tests: 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Also, when you post the test numbers it may not be meaningful unless you also post the reference ranges for each test, since different labs used different standards for what is negative vs. what is positive.

I would look at NCGS. By the way, had you already begun a gluten free diet before the testing was done? If so, you likely invalidated the testing.

And have you trialed a gluten free diet to see if symptoms improve?

I was underweight a LOT, before I was gluten free, and I am still a little underweight now but not as much as I used to be!