Discouraged...tests Negative...body Says Otherwise....

[LadyMac]

Hello again. I first posted here in 2008 and found this site to be a wealth of information and support. Went gluten free and life was good..Until last year...I came back here, read about how this does occur, took this info to my New doctor (fired the last one) and she sent me to the University of Michigan Health Center...one of the most advanced medical facilities in the state. Doc ran blood tests, endo and colonoscopy tests, removed a polyp and said tests show no sign of Celiac. I have been absolutely gluten free since 2008. He said the test may reflect my gluten free diet and if I don't have Celiac I may be intolerant. He suggested I may have bacterial overgrowth that he wants to treat with an emperical antibiotic treatment to see if that works. If that doesn't work he wants me to take all grain and fructose out of my diet. Now, I've had thrush issues for quite some time. I've had some intense dental work and when the dentist puts antibiotics in my mouth I get thrush...if I take antibiotics, I get thrush...When I have thrush I avoid all sugar and nightshade veggies...I've thrown away hundreds of toothbrushes...so I'm dreading the course of antibiotics, even though the doc said he'd prescribe and anti-thrush swill. I'm allergic to antifungals so I can't wait to see Those side effects...

Last night I ate a salad at a restaurant where my daughter cooked last summer...so they know all about gluten and she knows what's safe for me to eat. Came home and ran to the john. Been in the john six times today. My butt and I can't take much more of this...

Every time I've had any health issues since 2008 I've come here, done a search and found my symptoms in many threads...Sometimes I'd read and have a huge 'AH HA!'moment...Sometimes I'd cry from frustration...I know tests are not the definitive answer...I know tests can miss celiac signs because the length of our intestines decreases chances of finding damaged areas...I know intolerance is possible...I know other intolerances can develop...I eat well, stay within my gluten free diet and it all just seems to be in vain. Now I'm back to square one. I'm tied to my house and bathroom for most of the day...I feel like I'm almost down to a diet of meat and cardboard...

Has anyone else felt disappointed when their tests were negative? Who would wish for a disease? Shouldn't I be relieved? I just want to feel better. I want to be able to leave my house without a change of underwear...I feel like driving to a Panera's Bakery and eating loaves of bread, then driving to Olive Garden for a pasta orgy.

Thanks for letting me rant...and thanks for all the valuable information and support you all provide here. Having a place to just type these thoughts, a place to let that stiff upper lip slip for a bit...priceless.

Thank You

Carol

[mushroom]

It's so frustrating, isn't it, when you do everything right and you're still not right? Yes, of course your tests would be negative for celiac if you have been gluten free. He must know that.

Ummmm, can I ask a question? How come if he suspects you have an overgrowth problem that he is not testing to see what it is before "throwing" stuff at it?? You could have c.diff, candida, parasites, any number of things that a stool test would pick up. Then he could treat specifically for that, given how badly you react to antibiotics, antifungals, etc.

[LadyMac]

It's so frustrating, isn't it, when you do everything right and you're still not right? Yes, of course your tests would be negative for celiac if you have been gluten free. He must know that.

Ummmm, can I ask a question? How come if he suspects you have an overgrowth problem that he is not testing to see what it is before "throwing" stuff at it?? You could have c.diff, candida, parasites, any number of things that a stool test would pick up. Then he could treat specifically for that, given how badly you react to antibiotics, antifungals, etc.

Of Course you can ask questions! I appreciate the feedback...

I mis-spoke...He gave me an antibacterial, not an antibiotic.

One of the first things my new family Doc did was get blood and stool work done...no parasites, no auto-immune disease...I did have low potassium and calcium was a little low. She also had an ultra-sound of my gall bladder done.

I looked up empiric therapy...'the initiation of treatment prior to determination of a firm diagnosis. It may be thought of as taking the initiative against an anticipated and likely cause of infectious disease. It is most often used when antibiotics are given to a person before the specific microorganism causing an infection is known. Examples of this include antibiotics given for pneumonia, urinary tract infections'

I have been treated with penicillin twice this past winter.

So, I was feeling a bit more confident about the Specialist's investigative skills...even giving him points for continuing to look into my situation and not just writing me off when the tests were, in his opinion, non-celiac. Then I looked at the next prescription...Nystatin, for thrush. I am allergic to anti-fungals...

As if gluten sensitivity isn't enough...we still have to endure this kind of ****!

I love your "throwing" analogy! Again, thanks so much for your reply. This forum has been my lifeline for almost four years. Thanks to All of you!

Carol