My Story/do I Need A Biopsy?

[emilyjoan]

Hi there,

This is my first post (of probably many) on this website and I thought I would share my story. I moved to Edmonton, Alberta, Canada a couple years ago for college (I am now 20)and needed to find a doctor to do my yearly physicals. I found a doctor who was accepting new patients and went in to do a meet and greet with her, and to schedule a physical along with yearly blood work, etc. As she went through the history questions as well as issues I was having, the main problems that came up were diarrhea, abdominal pain and cramps after eating, eczema, and depression/tiredness. She suggested that I take a test for celiac disease (I had never even heard of it before, I thought it was something to do with my heart, so I just said "yeah, that sounds like a great idea...").

So I got the bloodwork done and went in about a week later and she had a few things to say. 1) My iron levels were low. (This reminded me of the problems I had a couple years ago when, after doing so for a couple years, I was unable to donate blood because of low iron levels. I attributed this to being vegetarian but what was weird about it this time was that I haven't been vegetarian for about 3 years, and I eat lots of food that contain iron. 2) She said I tested "slightly positive" for Celiac Disease and that I should eliminate gluten from my diet.

I eliminated gluten from my diet and went back about 3 weeks later and told her how great I was feeling; my eczema had disappeared, my stool was solid and no longer floating or diarrhea, my cramps had gone away, and I had way more energy than I did before. She said that this, along with the blood test, was a diagnosis in itself.

What I am worried about now is, after doing a lot of research since going gluten free (about 3 months ago), should I have gotten a biopsy? I asked her about it, but all she said was that it wasn't necessary, so I didn't have the warning to not start a gluten free diet until a biopsy has been done. She also didn't mention what tests she did, she just said that I tested "slightly positive" for Celiac. On one hand, I don't want to get a biopsy because really, I feel completely symptom-free after the gluten free diet. But I also think it might be a good idea just to have a firm diagnosis, instead of the "slightly positive" one. I'm also leaning toward not getting a biopsy because I'm scared of going on gluten again. I've had one gluten reaction since being "diagnosed" (I wasn't aware that kubasa would have wheat filler, so I ate some) and I had a horrible reaction, not like anything I had before going gluten free. My skin became terribly itchy, I had explosive diarrhea, and my stomach cramps were awful, not to mention the tiredness I felt for a week afterwards.

I have a doctor appointment on Monday afternoon (I am writing this on Friday, June 22), and I'm wondering what I should ask my doctor. She has already kind of shut me down about getting a biopsy, so I'm wondering if it's really necessary, considering how much better I feel? All a biopsy would really tell me is a confirmation, right? Since I am fairly young, I don't see a lot of damage having been done yet, but I could be wrong. Should I also ask her to check my iron levels again to see if they are higher after being off gluten? Would this be enough confirmation? Also, should I ask her what my results specifically were and what tests she did, and report back to you?

Thanks for any information you all could give me, this seems like a very supportive place

Emily

[nvsmom]

I'm waiting on my test results too (in Calgary) and my doctor apparently is not forcing the issue of a biopsy either. As far as I can tell, it is just a visual confirmation of the damage being done (and proof of damage is in the blood tests). It doesn't seem to be a requirement of being diagnosed up here... but I'm new too and could be wrong.

And from what I've read, getting a slightly positive celiac test is just like having a slightly positive pregnancy test... it's still positive. I understand where you are coming from though; that's why I'm getting my blood tests done... it's a lot of food to give up if you don't feel very sure. *hug*

... And kubasa? really? The Ukranian part of me is disappointed to hear that.

Nicole S

[emilyjoan]

I'm waiting on my test results too (in Calgary) and my doctor apparently is not forcing the issue of a biopsy either. As far as I can tell, it is just a visual confirmation of the damage being done (and proof of damage is in the blood tests). It doesn't seem to be a requirement of being diagnosed up here... but I'm new too and could be wrong.

And from what I've read, getting a slightly positive celiac test is just like having a slightly positive pregnancy test... it's still positive. I understand where you are coming from though; that's why I'm getting my blood tests done... it's a lot of food to give up if you don't feel very sure. *hug*

... And kubasa? really? The Ukranian part of me is disappointed to hear that.

Nicole S

Yes to the kubasa, apparently! I ate basically an entire ring, like I normally would have before going gluten free and my reaction was so horrible! I'm sure they make non-filler brands... I'm going to look at the Farmer's Market this weekend. I've been doing really well with gluten free, though... I'm going on 4 months and I find I didn't really have to change my diet much except for buying gluten free bread and being careful about sauces! and, of course, no more mcdonalds... :/ kind of hard for a University student!

[Teriw]

Yes to the kubasa, apparently! I ate basically an entire ring, like I normally would have before going gluten free and my reaction was so horrible! I'm sure they make non-filler brands... I'm going to look at the Farmer's Market this weekend. I've been doing really well with gluten free, though... I'm going on 4 months and I find I didn't really have to change my diet much except for buying gluten free bread and being careful about sauces! and, of course, no more mcdonalds... :/ kind of hard for a University student!

I eat McDonalds all the time with no reaction. Double Big Mac Combo, No bun, Extra mac sauce extra pickles. Its a risk though because if their other fryer breaks they will cook the chicken and such in the fry grease...hasnt happened to me yet though.

[Skylark]

Like Nicole says, being "slightly positive" on a celiac test is like being "slightly pregnant" on a pregnancy test. You're celiac, and feeling great on the gluten-free diet and sick when you eat gluten confirms it. Don't worry about the biopsy and keep right on eating gluten-free! Thank your doctor Monday for diagnosing you so young. My life would be very different had I been diagnosed at age 20.

[squirmingitch]

You're good to go emilyjoan! Be very happy you found a doc who knows what they are doing & recognizes symptoms of celiac when they hear them. I think you can trust the doc to do iron levels when she deems it's needed. But it won't hurt to gently remind her. ;-)

Go on, be happy! Be very careful not to get cross contaminated & keep feeling great!