So confused about everything

[Jojo7]

Hi! I'm new here and new to all of this. 

I'm a 28 year old female, known with Graves Disease i got diagnosed a year ago and im doing very well - my results comes back nicely every month. 

But I've been dealing with horrible symptoms the past two months and I've been in and out of hospital and doctors office without much help - until recently when I had a blood test for celiac: 

Deam. gliadin peptid-IgG[DGP] : <20 

Transglutaminase-IgA [tTG]: 40 

Immunoglobulin A: 4,74 g/L

And im honestly confused, my doctor informed me on a call about it, but didn't explain anything properly - just sending me to the hospital for further examination.

So if someone knows what these results mean, feel free to help me out and explain them.

My symptoms are: 

- Reflux like symptoms, left chest hurting, metallic taste when I wake up and waking up coughing horribly at night. (Doctor gave me ppi's for this, but it's not really working)

- Coughing badly about 30 mins after eating, feels like throat is tightening and I can't breathe properly. Noticed it's been very bad when I had gluten, like yesterday when I had a burger bun - felt like I wanted to throw up, but couldn't do anything but dry heaving. It was horrible.

- Lack of energy, feels like I've been attached to my bed for months

- Feeling VERY tired after eating and then headache starts and im suddenly feeling dizzy and can't focus on anything, everything is blurry.

- I'm very constipated as well. Comes out in small clumps with a lot of mucus. 

- I'm getting extremely emotional, I've been crying alot and often I don't even know why I'm crying when my bf asks. I simply can't explain those crying spells.

Sorry for the wall of text, but I'm completely new to this world and I'm not sure if this makes any sense at all and the pain from all of this is almost unbearable.

[trents]

Welcome to the forum, JoJo71. You have several classic symptoms of celiac  disease.

Can you please post the reference ranges for the lab test values, that is to say, what is negative and what is positive. I'm sure you assumed there are standard values for these tests but there are not. Each lab uses it's own reference ranges for the celiac antibody tests.

[Jojo7]

Hi - yeah I thought there was some sort of standard values. 🤔  but I'm from Denmark, so I guess it could be different.

Deam. gliadin peptid-IgG[DGP] is negative below 20 - so I assume mines negative.

Transglutaminase-IgA [tTG]: needs to be under 20 and mines 40.

Immunoglobulin A: between 0,7 and 3,12 is normal - mines  4,74 g/L

Problem is I don't know what any of those mean and my doctor didn't even bother explain it to me.

[trents]

The tTG-IGA is the most important test of the ones your physician ordered that needs your attention. The tTG-IGA is the most common antibody test ordered by physicians. The reason is that it is considered to do the best job of combining good sensitivity with good specificity for celiac disease. Your test value for this one is definitely positive.

What normally happens when there are celiac antibody tests with positive results is that a referral is made to a gastroenterologist for the purpose of scheduling an endoscopy with biopsy of the small bowel lining. Celiac disease is an autoimmune disorder that causes inflammation and damage to the villi that line the small bowel when gluten is ingested. During the scoping, samples are taken from the small bowel lining and then sent off to a lab for microscopic examination. This is considered to be the "gold standard" diagnostic test and it is used to confirm what the antibody tests turned up.

Please take note of what I am about to say. Don't start the gluten free diet yet. Many physicians neglect to or they don't know enough to tell their patients to not begin the gluten free diet until the scoping/biopsy is over with. Starting a gluten free diet before all testing is done for celiac disease will permit some healing of the villous lining which will compromise the results of testing. So, you need to discuss the antibody test results with your physican and find out if he/she want you to have the scoping/biopsy done.

Edited November 6, 2022 by trents