Nearly There!

[SarahK]

Hey,

I have been suffering with the same symptoms all my life, and am at my wits end. Have had chronic fatigue, mild deppression, pains in my gut, muscle pain, bad concentration and felt like i couldn't do the smallets task!! The doctor I'm dealing with now is really nice, and the specialist he sent me to seems to know what he's talking about......thank god!!

The doctor i went to when things got unbearable did a few tests and when they came back negative, told me to "get on with my life, there's nothing wrong". Anyway, have biopsy and endescopy and a few other tests on Monday, will actually be heartbroken if it's not coeliacs, because there are no other roads to go down at this stage!! So I'm soooo nervous that all the tests are going to be negative, how long does it usually take to get the results?

[kabowman]

My EDG was negative and I had already been gluten-free so I have never had the blood test. I am actually the first in our family to identify all these problems. After I started to point out all this stuff, and my symptoms, my family said, OH, my mom used to get like that, it was amazing.

Another person is now gluten-free and feels much better.

Just because the tests are negative, doesn't mean there isn't something going on. My fatigue is gone, my joint pain is gone, my fevers are gone, my swollen glands are "mostly" gone, etc.

Keep exploring and I would suggest, if you think this is food related, start a food diary (I made my own) and track EVERYTHING you eat or drink and your symptoms even if they seem unrelated. I liked mine 2-4 weeks on a single side of a sheet a paper because you can really start to see patterns easier.

It is a horrible pain to do but so worth it in the end. My allergist, after I figured most of this out, said that is the only real way to figure it out - he said the tests were very broad - like beans can be a lot of things and I can have some but not others.

[tarnalberry]

I would encourage you, if you think there's a good chance that it is celiac, to try the gluten free diet, strictly, for at least two months, regardless of the test results. The diet itself is a diagnostic test. There are also other food intolerances that should be considered if that doesn't pan out. Never give up hope!

[VydorScope]

I would encourage you, if you think there's a good chance that it is celiac, to try the gluten free diet, strictly, for at least two months, regardless of the test results. The diet itself is a diagnostic test. There are also other food intolerances that should be considered if that doesn't pan out. Never give up hope!

I completely agree. Try the diet no matter what, the biospy results can not be negative, ever, all they can be is NON-POSTIVE. That means in the extrem tiny sample area they looked there was no sign of celiac disease. So in realty the only time a bisopy for celiac disease is usefull is if its postive. Any other result is compeltely meanless.

You ahve ot fast for the Bisopy, following that fast, try the gluten-free diet and see how it goes. A food diry like mentioned above is alos a great idea.

[SarahK]

Hey,

I have been suffering with the same symptoms all my life, and am at my wits end. Have had chronic fatigue, mild deppression, pains in my gut, muscle pain, bad concentration and felt like i couldn't do the smallets task!! The doctor I'm dealing with now is really nice, and the specialist he sent me to seems to know what he's talking about......thank god!!

The doctor i went to when things got unbearable did a few tests and when they came back negative, told me to "get on with my life, there's nothing wrong". Anyway, have biopsy and endescopy and a few other tests on Monday, will actually be heartbroken if it's not coeliacs, because there are no other roads to go down at this stage!! So I'm soooo nervous that all the tests are going to be negative, how long does it usually take to get the results?

Thanks,

There is so much that they don't tell you. It's sooo frustrating, I thought that the biopsy is the most accurate test (that's what i heard) and never even thought of how many samples they take or where from!!!

I hate having to rely on other ppl for this, when they can get it wrong sooo easily!!!

It hasn't been easy, I'd say the stress of my Dad dying has made it worse as well He had a massive heart attack in March, so think I'm still dealing with that as well.

The food diary sounds like a good idea, so will try and start on that after the tests, is there any where I can get more info on the best way to do that? Like which foods should I eat when I start? should i eliminate nearly everything and then add them back in on by one? or should i eliminate one at a time?

Thanks again!!

Definitely appreciate your help!!

Thanks again!!

[ajay]

The food diary sounds like a good idea, so will try and start on that after the tests, is there any where I can get more info on the best way to do that? Like which foods should I eat when I start? should i eliminate nearly everything and then add them back in on by one? or should i eliminate one at a time?

Sarah,

I read & used "Allergy-Free Cooking" by Eileen Rhude Yoder. She discusses keeping a food diary and going on a low-allergen diet. Then you slowly reintroduce foods one at a time. Her focus is on allergies, but I think if you're concerned about gluten, it'd be better to go on a completely gluten-free diet for at least a few months and see how you feel. If you feel lots better, great! And if you want to try something you haven't had in awhile, make sure that's the only thing you eat that's new and make a note of when you ate it. Then if you get symptoms, you can usually figure out what the problem food is.

Good Luck!