Am I IgA deficient?

[tummytroubles777]

Hello all, I will try to keep it slightly short:

Went into Dr for the following symptoms, some of which I've had for 20 years, some for the last 5 years and all getting worse as time went on:

- abdominal pain & bloating, nearly 24hrs a day

- horrible amounts of gas, super foul smelling

- insatiable hunger, can never eat enough to feel full , for 5 straight years now, despite this have lost weight unintentionally the past 3 years

- extremely painful bowel movements, multiple times a day, ranging from water to goopy. All hideous smelling and embarrassing, and fluffy and hard to flush, with an oily sheen on the water

- muscle weakness, light headedness, dizziness, zero energy level, hand and body shakes

- foggy head, memory troubles

And other troubles but I'll move on, one of the many tests the Dr ordered was for Celiac, I've been able to view some of my results and I'm not convinced I'm negative, what I want to know is if I'm likely IgA deficient and if there is concern with my B12 results.

 Tissue Transglutaminase Ab IgA <0.8 Negative (my result)

 Reference Interval: Negative <7.0, Equivocal 7.0-10.0, Positive >10.0

Total TTg was not ordered and from what I've been able to find on Google less than 0.7 is considered deficient, so my result being <0.8 which is less than 0.8, could I possibly be IgA deficient? It should be noted I'd been on a full gluten diet my whole life leading up to these tests. Should I be asking for more testing?

 

Vitamin B12 results were 283, on google anything between 200-300 is considered borderline, what's your opinion?

Thank you

[trents]

Welcome to the forum community @tummytroubles777!

Your symptoms scream either celiac disease or NCGS (Non Celiac Gluten Sensitivity).

You may very well be IGA deficient. Physicians should always order a test for total IGA when they order the tTG-IGA, IMO.

I would suggest you request a more complete celiac panel with these additional tests:

1. Total IGA

2. DGP-IGA

3. DGP-IGG

Concerning your B12 levels, they are not great but not a huge concern either. Are you anemic? 

[tummytroubles777]

@trents thank you so much for your reply and opinion! 

To my knowledge I am not anemic.

I did go gluten free immediately following my blood work, I was feeling so terribly awful and nearly needed to carry a toilet around with me, and noticed improvements to my gut problems within 36 hours. I have been gluten-free for 3 weeks now and have only good things to report to family when they ask. I'm terrified of going back to ingesting gluten in order to have more blood work done tho 😢. 

[Scott Adams]

In order to be tested for celiac disease you need to be eating gluten daily in the weeks leading up to your test (if you need a formal diagnosis). 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

If you are only 3 weeks into your gluten-free diet and want to remain gluten-free and not be tested further, be sure that no gluten is sneaking into it. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[tummytroubles777]

@Scott Adams

Thank you for taking the time to reply and for including these write ups for me to easily view.

I truly don't know if I could resume gluten intake to undergo further testing. I feel like a brand new person, likes human, for the first time in over 20 years. I don't think I could backtrack.

Again thank you

[Scott Adams]

If you already have your answer, then why hurt your body further? Also, a formal diagnosis can lead to more expensive health and/or life insurance rates, not to mention that here in the USA it now seems to be one of the conditions listed under "Disabilities" in most job applications--so you technically need to disclose that to future employers--I can't think that disclosing this helps your chances of getting a job.

[tummytroubles777]

@SC Celiac Support Group you're absolutely right, it would be foolish to hurt my body further, and to be honest I've been glutened twice in this 4 weeks I've been gluten-free and it was not enjoyable. Made me realise just how "normal" feeling I've been since going gluten-free and has me terrified of unavoidable future glutened experiences. 

A disability? That's wildly outrageous, how in the world is a gluten intolerance a disability? I'm in Canada, not sure on what it's classified as here but I was made aware that with a Celiac diagnosis all gluten-free food becomes a tax write off. 

I still don't intend to pursue an official diagnosis, reading the requirements has turned me off. I couldn't imagine what consuming that much gluten daily for weeks would do to me. 

I like that you are supportive of not hurting one's body with gluten more than it has already been hurt.

Question: does living gluten-free ever get easier? This past week (3 weeks in) I've been frustrated with food/eating. I'm a married mom of 3, and I find myself frustrated with trying to figure what to cook that isn't too weird so that everyone eats it, as cooking 2 meals became tiring. I'm also frustrated with eating at friends/family as I bring my own food and find myself upset when I see/smell what they're eating. Silly of me I know, I've been staying home actually as I find it hard. Scott, do you have any advice for me?

Thank you kindly

[trents]

@tummytroubles777, eventually it becomes the new norm. You and those around you will adjust and it won't seem so abnormal. But it takes time. It's like acquiring a physical handicap that requires you to approach life differently at every turn. If you are wheelchair bound for instance or a having a prosthetic limb, you learn that there are some things that you just can't do anymore so you learn to focus on what you still can do and you learn to do lot of things differently than you used to. It's a real pain at first and very frustrating but eventually you realize this is the way it is and learn to live with it as you make adjustments. And the people who care about you learn to accept all this and adjust to it as well. I mean it could be worse. You could have ALS or something.

Edited May 17, 2024 by trents

[tummytroubles777]

@trents yes, it could be worse and that's something I tell myself daily, just in a slump I suppose. As I went into gluten-free with gusto convinced it would change my life and it has, I just have to find that positive attitude and keep pushing forward. Thank you for your insight.

[trents]

Yes, I think there is often a sense of elation when we first get our diagnosis and find the reason for the medical issues we were struggling with. But then the other shoe falls as we begin to really have to live out the huge social and dietary changes that recovery from celiac disease demands.

[tummytroubles777]

@trents I couldn't agree more with your statement!