Friday, December 12, 2008

I need your thoughts and advice.

Ok friends, I need your thoughts and advice so if you're a regular reader of this blog and know generally what I've been going through this year, I'm urging you to please drop a comment and let me know what you think.

As you know, I was diagnosed this past May with Crohn's disease after many many years of suffering. What prompted the diagnosis was actually my quest to be tested for Celiac disease because as soon as I found out what Celiac was, I was concvinced that it's what I have. The symptoms were all there and I did lots of research and talked to a lot of people and all signs pointed to Celiac. The Crohn's diagnosis was a bit of a surprise but I figured well I guess that's actually what's been making me so sick for so long, and went along with my doctor's diagnosis and treatment (you all know how that's been going....). My Celiac bloodwork has come back negative twice but I have never had a small bowel biopsy, which I know is important for an accurate diagnosis. Ever since I was diagnosed with Crohn's I've had this sticky feeling that there's more to it and that I should keep pushing for Celiac testing but after the past six months of misery on medication, and now feeling much better being taken off the meds, I had decided that I was not going to push any further. I would not ask for a biopsy, I would just go ahead with the gluten free diet because I know it works and why bother having a tube shoved down my throat, right?

Well here's the thing, I believe very strongly in signs and yesterday a few things happened that made me question again whether or not I should proceed with further testing for Celiac. I called my Mom this morning to talk to her about it and she said that she's been thinking recently that it might be best for me to get a second opinion and that she also feels strongly that Crohn's might not be all I'm dealing with here. My reactions to the back and forth with the gluten free diet strongly show that I react to gluten. There's no question about that. The biggest sign I recieved yesterday was a connection to a family link that brought me back to my cousin's health problems. She's been trying to get pregnant for a very long time and has succeeded more than once but can never carry longer than a few months. I've thought ever since I found out that Celiac can contribute to pregnancy issues that this may be something that she should look into and I mentioned it to her a while ago. She's one of the biggest reasons I had wanted to get tested in the past because if I do end up testing positive, I strongly feel that she may have it too. There is already one confirmed Celiac in the bloodline on that side of my family (my Mom's side).

So, I'm the type of person that needs that extra push sometimes and that's why I'm reaching out to you all. If you've been reading this blog and have ever thought to yourself that I should really keep pushing, please let me know. Or if you have any other thoughts on the subject, I'd really like to hear. I've relied heavily on this community of GF bloggers to help me through this time and I can't even begin to tell you how wonderful it's been to have you all around. Thank you so much for your support!!!!

10 comments:

Allie said...

Hey Jen....

I definitely think you should go for the second opinion. Start fresh with another doctor & see what they think. Why not? I mean - it will just cost the co-pay and some more time, and probably another round of testing, right? -- but then you won't be constantly thinking "What if..." and that will just be stressful & counterproductive. I see no downside to doing this...

I personally got a biopsy because I wanted to know FOR SURE, and not ever wonder, well... MAYBE it's not celiac - I even had positive bloodwork, but just wanted 100% confirmation. That was a personal decision for me, I know some people feel differently, but again, I knew my insurance covered the endoscopy, and I knew for myself that it would be best!

You should trust your gut (despite it's crazy behavior! haha) and your gut is telling you something is off -- go for the second opinion, and get a third if you need to! Your health & well-being are WORTH IT!!!!!!!

Diana said...

You know I think a second opinion is worthwhile. I think you have made the decision already, you are just second guessing yourself. Go for it!

Liz said...

Hey Jenny,

Have you looked into Enterolab at all?

https://www.enterolab.com/Home.htm

They test for gluten sensitivity (which has the same symptoms of celiac disease, but no damaged villi). My sister and I were tested two years ago, and it was all I needed to keep me off the gluten. My sister actually mentioned to me that she doesn't think she would have gotten pregnant had I not had all these stomach issues and gotten tested, which in turn made her get tested and go gluten-free.

I have to admit that over the years I've become a bit jaded with the medical community. I had blood work and a biopsy done which came back negative and after months of keeping a food diary and noticing there was a direct connection to eating gluten and getting extremly sick, my doctor just ignored it. There are doctors out there who accept enterolab results, and some who do not. I trust my sister's opinion on the lab because of her science background (PhD) and she totally trusts it.

Let me know if you have any questions; there's a lot more to my gluten-free journey. I've been wanting to post about my story for awhile now and may finally get to it.

Good luck Jenny! And remember that when it comes down to it, just listen to your body.

Marlow said...
This comment has been removed by the author.
Marlow said...

I agree with everyone here. If it's going to make you feel more at ease, I would do it. Plus, a second opinion never hurts! But I would think about keeping a food diary. :) My doctor told me that I also have to avoid MSG. Alot of folks who can't tolerate gluten also can't tolerate that.

Lauren said...

Totally go for the second opinion. I know that Crohn's isn't easy to handle, and auto-immune diseases often come in multiples, so just get the second opinion if not to just give you some peace of mind.

Sally said...

I haven't been reading this for a year, but since I have been reading it, it seems that not being entirely sure of what is making you sick is nagging at you. And rightly so! I was lucky that when I moved to Boston from Michigan and was deathly ill for two months, the first doc I went to said "let's just do a blood test for celiac to see. I just had a girl last week get that diagnosis who I never would have thought had celiac." Lo and behold, it was off the charts high and I then confirmed it with an endoscopy at her insistence.

I'm glad I did, because now there is no question. So now if I'm sitting in a pub and all my friends are chowing on fried calimari, I don't say "man, maybe I could eat this and be fine. I don't know i can't eat gluten for sure..." Now I know that it would hurt me and it's totally not worth it.

I'm with everyone else on here, get a second opinion, there's no downside to it other than more testing, but you seem to still be doing lots of testing and experimenting with meds now as it is.

Keep us updated and good luck!

jennifer said...

One thing that I've learned through years of misery-- never give up when it comes to second, third, fourth, twenty opinions because someone will eventually get it right. then, it will all be worth it.

good luck!

Andrea said...

I've dealt with being diagnosed with Crohn's disease for nearly 10 years now, but never being able to see any relief by taking doctor prescribed medicines. Eventually i started doing my own research and came up with alternative tracks. currently i'm experimenting with a gluten free diet even though i've been tested several times over the last 10 years and they've all come back negative. i've always seen some correspondence between eating foods with wheat and overly processed foods and feeling bad. so my suggestion is try the gluten free diet and if it makes you feel better, do it. there's no harm in that. second opinions are good but if you test negative once there is a good chance you'll test negative again. so i wouldn't stop with another negative test. also see the book "Listen to your Gut" by Jini Patel Thompson. She has done a lot of alternative research regarding dealing with Crohn's disease. Whatever you do, trust your instinct!

Sophie said...

I had bloodwork done and it came back negative. The doctor tried doing the biopsy, but I didn't handle the endoscopy very well so he couldn't go through with it...after being on the gf diet for so long, my husband thinks I am a celiac or have a strong gluten sensitivity; I get the most sick whenever I accidentally ingest gluten and find out about it later. The doctor thought I might have crohn's but I didn't want to do that horrible colonoscopy, plus I got better after going on the gf diet...I do have IBS too, though. It's irritable bowel syndrome; they don't know what causes it, but it can cause stomach discomfort and a lot of people with IBS are sensitive to gluten. Have you heard of IBS? It's a title that gets thrown around a lot. I honestly might consider a second opinion, but I think you should trust your gut, literally :D...if the gf diet helps, then you've got your answer. But if they actually did a colonoscopy and saw the crohn's in progress, then I'd get a second opinion...lots of folks with crohn's have celiac disease. Phew, that was a long answer :)!