Pursue Official Diagnosis?

[cait]

I have had chronic pain and fatigue that I have always assumed were related to misdiagnosed Lyme Disease (diagnosis delayed 2.5 years due to idiot doctor, have gone through many different types of treatment since diagnosis, but nothing actually fixed me). My dad was diagnosed with Celiac after my Lyme Diagnosis, and I had the blood test to rule out Celiac as a contributor to my issues. Negative.

In the last few years, my pain and fatigue have increased. Yes, I have small children (not biologically mine, so can't blame pregnancy for anything), and a demanding job, but I have been pretty flattened and in pain the majority of the time. I had my doctor run a bunch of tests this fall to make sure no other things were developing or complicating matters, and asked for a Celiac test again. Everything came back normal. (I don't know for sure which tests she ran. I know that total IgA was not tested, which may or may not factor into negative celiac results.)

The acupuncturist/naturopath I started seeing this winter suggested that I might have issues with gluten. I filed that away as a "desperate measures" sort of thing. I finally hit that desperate point this week. I've been off gluten only a few days, but am already noticing differences. Most dramatically, my stomach doesn't hurt. I hadn't fully realized how much of the time my stomach was bothering me (sort of blended in with the rest of the pain) until suddenly it didn't. It's kind of shocking. I hadn't really realized that normal people aren't intensely aware of their stomachs all the time. I'm hoping that over time the pain, fatigue, brain fog, etc will diminish as well.

My question is, assuming being gluten-free continues to help, does it matter if I have an official diagnosis? Right now I have no desire whatsoever to consume gluten, and that's saying a lot given my lifelong love of bread. But actually having hope of feeling better is way more appealing. Obviously if it's important I can go back to gluten and have other tests done. I'm only a few days into this. But does it really matter? Will it change anything to know if I'm Celiac or just intolerant? Will tests show anything that being gluten-free for a while and then doing a gluten trial won't?

[sb2178]

There are several reasons to be tested:

1) easier to get MD approval of tests for relatives (less relevant, since it's already in the family)

2) establishing a baseline for tracking improvement

3) getting follow-ups on issues related to malabsorption (i.e. low ferritin, folate deficiency, etc), RD referral, letters for travel or other needs, etc

4) really and truly persuading yourself that this is or is not permament.

On the other hand:

1) it can be expensive (depending on biopsy costs)

2) you have to get an MD to agree to do it

3) you would need to return to eating gluten

Before you decide, I'd get a copy of your test results. If she ran a full panel, it is possible that your values have changed (mine did) but also possible that you are just not testing positive. The tests are not perfect.

It's your call. I needed the tests, partly because I had a hard time talking myself into it despite being quite ill and feeling better off it, and partly because I was concerned that it could be another GI issue.

[koolkat222]

You are feeling better, and that's the important thing! Unless there is some reason for an "official" diagnosis, I wouldn't worry about it.

I know the relief you're experiencing at finally realizing, after all these years, what has been making you feel so terrible.

[Monael]

I can only speak to my personal experience. I figured out quite recently that gluten was my problem after a long history of IBS diagnosis and having serious bowel movement problems, as well as brain fog, depression, iron deficiency, scalp sores/itching, etc. For me, it is not relevant what my "official" diagnosis is. I feel so much better on a gluten free diet, that I honestly have no desire to eat it again.

Now, do I miss certain things? I do. For example: I bought my son some McDonalds because we were pressed for time. I couldn't figure out whether the fries were gluten free so I actually passed up the fries! If you knew how much I loved them you would know that I am certainly serious about this. But the symptoms are just not worth it!

There is a bit of an adjustment but the fact that I am having normal bowel movements for the first time in I don't remember when (not to mention the absence of pain and urgency) that even if for some bizarre reason my test results showed that I do not have celiac disease, nor am I gluten intolerant, it wouldn't change my determination to not eat it ever again. My results speak for themselves (to me).

But if there is some medical reason, or other reason, that you feel the need to pursue this then that is what you should do. I really don't mind not eating gluten, even if I have to find substitutes (like pizza!) but everyone is different.