5 replies to this topic

[kaysol]

I am FINALLY meeting with a GI Dr. on Tues after waiting over a month to get in.
all 3 of my blood tests came back positive for celiac. My meeting Tuesday is just a consultation - they wouldnt even let me schedule the biopsy until I meet with him. I am so worried that it might take another month to get the biopsy done and I am getting sicker by the day. The past 3 weeks have been terrible, my stomach keeps gettting bigger and bigger (I actually look pregnant), I go between terrible consipation and then to diarehha and wake up at night with horrible pains in lower intestines. I guess my question is, if they can't get me in any time soon should I just say forget the biopsy and go with the blood test diagnosis? Could anything else make the the labs posative other than celiac? I am hating that I have to eat gluten and knowing that I could feel so much better. I feel like my life is on hold and I am so scared that something else could be wrong due to the disstention and horrible pains. My numbers on the blood work were all very high (IGA was 144 and my IGG was 111 and the other one was positive although I don't know the #'s also my cholesteral and iron were very low - 150 and 8). I am trying to prepare myself for the possibility that I might be told I have to eat gluten for another month or longer and I am wondereing if I would be safe saying forget it. Can these numbers mean anything else? I am so depressed and scared right now. I didnt really have many syptoms until recently but I feel like I keep gettting sicker by the day. Any advice would be much appreciated!
Thanks!
Stephanie

[tarnalberry]

It's a personal decision. I am not biopsy diagnosed, but my doctor was willing to go on inconclusive blood tests and positive dietary challenge. But it's really a personal decision. You might have very little intestinal damage (though I'd doubt it from the low iron count), but at the least the blood tests say your immune system reacts to gluten.

[SteveW]

Going through the diagnosis process is not fun. It took me around 3 1/2 months of hell before I was confirmed to have Celiac Disease. But I also had a colonoscopy and was told I had some irritation in my colon and that I might have Crohns as well as Celiac. Turns out that I do have a mild case of Crohns. So I guess I'm saying in my case it was worth to get the biopsy. If you choose to go with a biopsy make sure that you get a colonoscopy at the same time. All these intestinal disorders have similar symptoms so the best way is to go in and check them all out.

[CarolynM]

Weighing in on the "skip the biopsy" side! With only positive antigliadin, we reluctantly went with the doc's recommendation and did the biopsy. ( I was ready to try gluten-free seeing obvious reactions to pastas, pancakes) It postponed getting by daughter healthy by nearly 3 months.

After waiting for an appointment then the biopsy. We were told everything was completely within normal range after the biopsy. She got worse and I decided to go gluten-free without the doc. It took only 3 days to see improvement - solid stools and sleeping much better. Now a month later, I wish I had skipped the anxiety of the biopsy and the $6000+, and still coming, in medical bills that thankfully, our insurance is paying 80%.

I say try your own test with a gluten-free diet. You can always go back to the doc for tests if you don't improve.

[ryeanddiet]

Hi Stephanie
I'd vote for 'get the diagnosis'. Several on the board have gotten relatively quick tests from enterolab and had the results accepted by their GI/GP, if your Dr won't confirm the diagnosis just with the blood test, ask if he/she would accept this.
I don't have that option living in Canada. I had positive blood so went gluten-free only (I felt better than I ever have in my life, all symptoms disappeared, all anemias turned around) to have the GI tell me 8 months later they wouldn't confirm celiac without the biopsy. I want the formal, medical diagnosis so Dr's will keep an eye out for associated illness, my children will get tested, etc.
I'm now back on gluten in preparation for the biopsy and am more sick than I was before. I know it's not fun but my opinion would be to get the diagnosis (unless you don't care and it's unbareable, in which case try to find a more sympathetic Dr and go gluten-free).
If your GI insists on a scope, there may be options. I'm paying to go to a higher end private clinic just so I don't have to wait the 9 months for the appt (I'm in Canada, public health care takes longer).
Best of luck. Fingers crossed.
jen