Not Yet Diagnosed

[Findabhair]

I have been seeing a psychiatrist for almost three-years now, and she just got blood work results back, and after examining that, as well as my past health issues, as well as looking into my family heritage. As well as the recent drastic change in my thyroid levels. And has suggested that I see a family doctor to be checked to see if I am Celiac.

I have been through a lot of health issues both mentally and physically through my life. And honestly this terrifies me.

I have no idea what to expect. I am absolutely terrified. I have no idea what to expect for the testing or anything. And as far as I know, none of my friends or family suffer from this.

Can anyone help me understand what will happen from here?

What can I expect to be included in the tests. And after?

[mushroom]

Hello and welcome. I hope you find this board a place of comfort and support.

There is really nothing to be of afraid of with celiac testing or diagnosis. And if you test positive you will find it very comforting to have an explanation for a lot of symptoms that may have been puzzling you.

The first line of testing for celiac disease is a panel of blood tests, to test for antibodies to gliadin which is a protein in wheat., rye and barley. There are several different kinds of tests they run so they will probably take at least three different vials of blood. If these tests come out positive, you will probably be referred to a gastroenterologist who will perform what is called an endoscopy where they insert a small tube with a camera on it into your stomach, and take some tissue samples from the upper part of your small intestine, to see if there has been any damage done there by gluten. These are then put onto slides and read by a pathologist because often the damage cannot be seen with the naked eye, although the doctor may be able to see it through the scope.. The procedure itself is pretty routine and while it may sound frightening it is a very low risk procedure and you will remember none of it. They do not give you anesthesia, but they give you a sedative, and another drug which makes you not remember anything that happens. The first thing you know you will be asking when are they going to do it, and they will tell you they already have done it You will recover from it very quickly, not like from an anesthetic, but you will need someone to drive you home.

If the tests are positive you will be instructed to eat a diet that is free of wheat, rye and barley; that is, a gluten free diet. And while this does take a little bit of adjusting to, because after all we have all been eating gluten all our lives, once you get the hang of it and once you see the benefit of it, it is very easy to follow.

If you have to be diagnosed with something, celiac is one of the best diagnoses to have because there is no medication to take for it, no surgery required; you just have to change what you eat. And while we can be fearful of change, there is no reason to be terrified of this, I can assure you.

Since celiac is a genetically based disease, if that is in fact what you have you will have received a celiac gene from at least one of your parents; but not everyone with the gene develops the disease - there seems to need to be a triggering event, an emotional of physical trauma, that sets the process in motion. This trigger is not yet fully understood.

Please feel free to ask whatever questions and concerns you have and the good folks here will be glad to help you.

[Marz]

Nice reply mushroom, I think it's all covered really

Welcome to the forum, and don't be scared - you've got a lot to look forward to if Celiac disease is your problem, including potentially decreasing/disappearing psychiatric problems. See Skylark's posts for how her bipolar condition got better, lots of us suffered from panic attacks/anxiety that disappeared going gluten-free.

Edit: Apparently I've got lots more to say

Just wanted to say you've got a fantastic psychiatrist there. I struggled to get my *Gastroenterologist* to check me for Celiac disease, so to have a Psychiatrist be aware of the neurological connection and get blood tests done is excellent.

Sadly your family doctor may not be informed about what tests to run. You need to get the full celiac panel done (and if they don't have anything like that, specify IgA and IgG anti-gliadin, tTG, and IgA total blood tests. There's also a new anti-deaminated gliadin test that's even better than the tTG. The total IgA is to test for IgA deficiency which is more common among celiacs. It's *not* IgE tests - that's an allergy, and completely unrelated to celiac disease.

Even with negative blood tests, you could have intestinal damage - your doctor should refer you to a specialist to have an endoscopy done with biopsies, to check for small intestine damage.

And even if both of those are *negative*, there's still a chance you could be sensitive to gluten. Especially with neurological problems (Which may involve a slightly different form of the tTG antibody), you could have negative tests, and find a lot of relief from random problems going gluten free.

But get the tests done first before you go gluten-free, and then ask your doctor/therapist about whether you should try the diet and see if it helps.