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My Story/do I Need A Biopsy?

emilyjoan

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emilyjoan Newbie
emilyjoan
Posted

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

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nvsmom Community Regular
nvsmom
Posted

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 Newbie
emilyjoan
Posted
  • Author

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 Newbie
Teriw
Posted

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 Collaborator
Skylark
Posted

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 Veteran
squirmingitch
Posted

You're good to go emilyjoan!smile.gif 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!

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