Losing everything.

[aorta]

I have been seriously ill for over a year without diagnosis.
It started with symptoms like colitis, diarhea cramps, nausea etc.
i started a specific carb diet, diarhea slowed down but still ill.
Doctor prescribed pentasa. Took that for five days, started getting joint pains, burning in my arms and legs.
To this day, i have one soft bowel movement a day, too soft, on the pale side. burning in my arms and soles of the feet, heart pounding and ive developed from being ill so long, depression and anxiety.
This week, i will lose whats left of my business.
Tests i had include upper scope, colonoscopy, small bowel series, ultrasound of abdomen, all negative including biopsies. Much blood work.
The only flag on the blood was one slightly elevated celiac marker. a 20 i believe when the marker was 19.
so i tried going gluten free, but confess it wasnt 100%. I dont know about all my prescriptions and things like that. I eat out once in a while and im not 100% sure.
In any case, im still extremely ill and losing everything i hold dear.
No diagnosis. Now im petrified of more and more intrusive testing.
Another symptom is right along, the stool seems yellow tinged on occasion, or the toilet tissue. Bile? Dont know. I dont have severe pains in one place such as pancreas or gall bladder. Most of the time, just burning in the intestines, a pain here or there that moves. Im usually very sick after a bowel movement, and the nerve pain, burning in the feet etc. seems to increase. Have been taking sublingual b12, multis and a calcium magnesium supplement. Dont know if they are all 100% gluten free.
Im afraid im going to die and lose my family. Help, if you can.

[Judy]

I'm sorry for your troubles...

If you have an elevated celiac marker, I think it would be a good idea to try going totally gluten free. If gluten is the problem, it will take some time for you to feel better, but at least you'll be on the right track. Speak to your doctor about further testing for celiac. My husband had problems with his stool being very pale and nearly yellow, but once gluten free he felt great again. Being gluten free isn't an instant fix, but with some time and diligence in looking for gluten, you will feel better.
_________________
Judy

[aslo]

thanks for the reply. Doctors in my area are not that gluten knowledgeble in my opinion or prefer things they can prescribe for.
in any case i had several blood tests for gluten and the biopsy of the small intestine. Only one gluten marker showed up slightly over, but, at the time i was already somewhat avoiding gluten, i didnt know. Now i would hate to resume eating gluten, because i do think i would be very ill.
It does seem that some things make me sicker, but im not sure what and why.
Crazy questions.
What is a good multivitamin thats gluten free?

If i am not celiac, will avoiding gluten make me one?

If i am, i would assume my neuropathies are from deficiencies. Whats the best way to get theses nutrients back? (nothing shows up on blood work)

Thanks

[aklap]

Hi aorta/aslo,

Sorry to hear you are still having problems. If I remember correctly you post here before.

One test that you may consider doing is the Gluten Sensitivity test from Enterolab http://www.enterolab.com/Which_Test/ It can detect the evidence to gluten in your system for up to 2 years after being GF.

With you being gluten reduced...it may have been enough to skew the results of the blood test. Do you know which tests were run and which one was high? You might want to get a copy of the test results. Many times the docs can overlook things.

I too had all the tests...they came up negative (biopsy too). The only thing that helped me as going gluten free. Eventhough the biopsy shows no celiac - it's possible for that test to be incorrect as well. If they samples were taken from a non-damaged area, or there were not enough samples taken, or they were mounted incorrectly...can all affect the reading of them.

Of course it's also possible that you don't have damage YET. This also is from Enterolabs, please look thru this. Gluten Sensitivity - Before the Villi are gone

Has your doc checked for gallbladder problems?

If I remember correctly...all Centrum multi's are GF (double check tho).

Avoiding gluten will not make you celiac. If you are gluten sensitive now, it maybe possible for it to result in Celiac and/or any number of auto-immune diseases IF YOU CONTINUE TO CONSUME GLUTEN. The research has not given a definitive answer on turning celiac.

1st thing is to rule out all other medical issues. Then I probably would try the enterolab test 1st and see what the results are. Then I'd make an honest attempt at being GF - 100% GF - checking EVERYTHING. Try it for a good 3-6 months and see how you feel.

I wish you well!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aorta]

wow what a memory. i believe i was aslo, but couldnt log on as such oh well.
Ruling out ALL other medical possibilities is a nightmare. Ive listed some of the tests ive done for the g.i. for the neuropathy, the tests are endless.

i will check out the enterolabs. I assume i will need a doctors prescription and then pay a fortune for the tests? Excuse my cynicism, im not only near death, but near broke as well. Someone is suggesting a similar test for lyme, out of pocket very expensive, many many positives.

all i know is, i can improve things to a point that seems to be all. I can mess up things very badly, but im not sure what food if it is food does it.
i was doing fairly well with the g.i., not great but o.k., then i cheated on the gluten thing with a few chocolate mint girl scout cookies. It was almost an orgasm then, but the next two days, now my intestines are killing me and im running to the bathroom, so it seems there is a connection.

The contamination thing worries me as well. Does everyone have to have seperate pans, and be that careful, or just some?

Does anyone have neuropathy symptoms, burning, and how do they treat the deficiency? That should probably be another post.

Thanks for the info. I will check.

[aorta]

by the way al
antigliadin abs igg was 20 a weak positive
the others were normal.