I Messed Up...

[sareli]

I'm going to start by listing my symptoms, I have had NO tests or anything. I have been gluten free for almost a week and already feel much better. Some of these symptoms I do not currently have, but have had in last few years or since childhood. I am 28 years old.

hypothyroid

anemia

fatigue

joint pain, sometimes extreme in ankles, wrists, hips

mouth sores

infrequent bm's

extreme gas

extreme muscle weakness since birth of my son 10 months ago

depression

other psych disorders I won't list:-)

abdominal cramping, sometimes severe-doubling over

2 miscarriages

panic attacks

chest pain

heartburn

sometimes at night my arm/hand goes numb, but it's not from sleeping on it

sometimes my toes go numb during the day

So, some things are getting better already. Problem is, I didn't know you weren't supposed to stop eating gluten b4 your tests and I DO NOT WANT TO GET BACK ON and watch all this stuff get bad again. I've only been off for almost a week. Don't you think the culmination of these symptoms warrants a celiac test? If I get blood tested tomorrow, would that be close enough to my gluten eating to not have to start eating it again. I don't have money to do any mail order tests, medicaid would have to pay for it.

thanks,

sarah

[chocolatelover]

Hi Sarah,

I'm pretty new to all this as well, so my thoughts are not necessarily all exactly right. With that said, I believe that a week off gluten would not be long enough to get it all out of your system. I think that it takes much longer than that. The blood tests may show something, or may not. I know of plenty of people who have had negative blood work and then go on to have a positive biopsy. I do know that it takes 3-6 months for the small intestine to heal after being damaged by gluten, so one route is to have an endoscopy to see if there is any damage. I don't know how long it would take for you to get a biopsy, though.

As for your symptoms, I do know that celiac presents with many different symptoms and sometimes none at all, so it's hard to say--certainly a number of your symptoms could be related. The important thing that we all know (but is very hard for many of us to do), is that if staying off gluten makes us feel better, then why not do it?

If you are going to go ahead with the tests, do them sooner rather than later; you're much more likely to get positive results that way.

Good luck!

[Corkdarrr]

Hi Sarah,

Wow - your symptoms are almost identical to mine.

For me, it's my big toes that go numb. Does that really happen to other people? I thought it was one of my special quirks!!

Anyways, I had been gluten-free for two weeks when I had my blood work done and it came back negative. My doctor also said it would be okay that I'd already gone gluten-free. I should've fired him right then...

I suppose it depends on how much gluten you were eating before. I know I didn't eat a whole lot of bread and pasta and blatantly gluteny things, but as you are no doubt discovering, it's still EVERYwhere. It does take months to completely purge itself from your system. But that doesn't mean that there's enough 'left over' to diagnose through bloodwork, either.

If you want an accurate medical diagnosis, you should probably start eating gluten again. Someone will jump in, but it's several pieces of bread every day for several months, I believe.

If you're like me and a medical diagnosis isn't terribly important, then stick with the diet. If you feel better without gluten in your life, then it's pretty self-evident. I mean, if the tests came back positive they were just going to tell me to do exactly what I'm already doing!

Several months into things, I decided I wanted SOME sort of diagnosis so I went through Enterolab. It was expensive, but well worth it in my mind. Especially after researching the alternatives and how inaccurate they can be!

It really all comes down to two things in my opinion:

1. Do you need an official diagnosis for your own peace of mind?

2. Will your insurance cover it? (mine wouldn't... )

Courtney

-- Have you looked into adrenal fatigue?

[tarnalberry]

You can try getting a test tomorrow. You run a risk of a false negative, but it's not as high as if you waited any longer. You don't have to have a formal diagnosis to eat gluten free, of course.