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Second opinion? important!

EmAitch88

EmAitch88

second opinion? important!

alrighty. things are feeling bittersweet right now. had my colonoscopy yesterday (looks good! nice and pink in there, a couple ulcers.) and my doctor had the results from my endoscopy...negative for Celiac! yay! -right?? well, i'm relieved but i'm also confused...and a little let down. i thought i was going to have a way to get rid of/lessen the symptoms i have. also, it's just weird to have had a false positive with the bloodwork. i'm confused!!!!! i don't feel 100% sure that i don't have Celiac, i'd like to be 150% sure. here are some symptoms i have:

Abdominal cramps, gas and bloating
Borborygmi (stomach rumbling)
Easy bruising
Fatigue or general weakness
Flatulence
Gastrointestinal symptoms
low Iron (doctor told me yesterday my iron is low)
No obvious physical symptoms (just fatigue, overall not feeling well)
Panic Attacks (slight)
Vertigo
irregular periods
very warm
headaches

maybe it's just my nerves getting to me and i'm becoming paranoid...? could these things just be from Crohns? should i get a second opinion? i dunno, the endoscopy showed nothing and that's the gold standard test, so should i just be happy with the results?? is it possible i could still have this disease...i'd like to know now rather than later when i've got cancer or i'm infertile because of it.
 
EmAitch88

EmAitch88

oh and my doctor said that the bloodwork showed very low levels of whatever it is that makes it come out positive....i don't even know what that means. :D
 
EmAitch88

EmAitch88

thanks, David!! this reminds me of another confusion: my vitamin levels have always been normal. so it helps me to not understand why i feel the way i feel sometimes. it should be because of vitamin deficiency that i'm tired and such, but i don't have low vitamin levels. except, now, my iron is kinda low. i dunno....
 
David

David

Co-Founder
Location
Naples, Florida
It could very well not be vitamin mineral deficiency related, it's just what usually pops into my mind since it's so common for people with Crohn's. It's a difficult thing to monitor for so many reasons. For example, let's just look at vitamin B12. B12 is stored in the liver (up to 5 years worth!) so it may be years before they actually see deficiency despite years of malabsorption. And even then, you may have a "normal" level according to western standards but low compared to international standards. Or your levels may be masked by folate in your diet. Or your serum B12 may be "normal" but the doctor never checks your homocystein or methylmelonic acid levels which might be high which would showcase B12 deficiency. It's frustrating and I admittedly have a lot to learn before I start getting REALLY militant about it like I want to :D

Regardless, I'm sorry you're feeling like you do. I hope they get it figured out soon!

*hugs*
 
EmAitch88

EmAitch88

thanks so much for the support and information! it IS SOOOO FRUSTRATING. there are too many things to look at and it's hard not to think that your doctor isn't looking at all of the possibilities....
 
tiloah

tiloah

I would say if you have any doubts, go ahead and try life gluten free and see if there's any improvement.
 
EmAitch88

EmAitch88

i was thinking about doing that, diesanduhr. but i've heard that going gluten free can mess with tests...not sure which route i'll be taking, especially if i'm going to switch doctors and seek more medical help. getting pretty stressed and freaked out.
 
F

flowergirl

Location
florida
celiac is really hard to diagnose. just because they get some biopsies that are negative doesn't mean anything. and endoscope can only get so far into your small intestine. there's so much that they can't reach. it took my mom 20 years to get diagnosed.

that said, have you also had your thyroid levels checked? over or under active thyroid can cause a lot of those issues. .
 
tiloah

tiloah

The only tests going gluten free will mess with are the ones that test specifically for gluten sensitive enteropathy (celiac), which you said you had and were mildly (possibly insignificantly) positive. Not eating wheat will stop your body from producing the antibody that they test for, but you'll know why.

Are you planning further testing for celiac at this point?
 
EmAitch88

EmAitch88

i want to do any kind of tests i haven't had done already. like i said, i want to be 150% sure i don't have it. i also think that there has to be SOMETHING going on..other than Crohns. i'll ask my doctor about getting my thyroid levels checked, thanks Flowergirl.

this may end up being a long journey for me! i hope i can get a doctor that's willing to work hard on this with me...
 
jenny2

jenny2

i have most of them symptoms that you are having, my stomach sounds like water running thru it most of the time and i have diarrhea about 4 times a day. still dont know my celiac biopsy results. if i have negative celiac biopsy and i keep feeling bad i am just gonna try the celiac diet for awhile and see if i can get my symptoms to go away. i have lost about 25 pounds and cant gain weight or lose. i also had them check my thyroid and it was fine.. i want to see what the endoscope biopsy says when it comes in..
 
Slim Johnson

Slim Johnson

I was told by my last GI that ceilacs can be tested for with blood, and confirmed with a biopsy. My serum test came back negative, which was a relief. However, I do have issues with wheat products that have been highly processed. The more crude the wheat derivatives, the easier they are on mt gut.

Have you experimented with different varieties of wheat? For example: White bread vs. whole wheat (the hippy sort) bread. Cheap pasta vs. organic? It may be that (like me) you are having issues with the quality of the food vs just being intolerant.

Just a thought.... :) Good luck in your search!
 
Slim Johnson

Slim Johnson

EmAitch88 said:
i have not, Slim. thanks for the suggestion!!! i'll look into that....didn't think about it.
Click to expand...
Just bear in mind that some things are going to aggravate your gut.:poo:

Also, I avoid any bread that has corn syrup in it. Seems to be something that has been creeping into all foods.
 
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