Thank you so much! That's something I've been looking into as well, and it definitely makes sense to me that it could be an issue. I've tried elimination diets with some success (I now avoid most soy), but they can be pretty overwhelming and I also felt like it made sense to take some time with just the regular gluten-free diet and see how well things healed on that without getting overly-complicated.
Are you able to eat out at all, or is the risk of CC just too severe? I'm afraid that's the reality I may have to accept! Either way, I'm so glad Dr. Murray was able to help you - thanks for your input!!!
Thanks for your input - I'm definitely considering that option, but I want to think ahead about appointments because it seems like all of these places having 3-4 month waiting lists.
Also... How common do you think it is to have to literally completely eliminate eating out? I feel like I've been super, super careful about CC and I've never knowingly cheated... I've check my medications, supplements, cosmetics, etc. I know the only way to know for sure is to do whole foods at home and see if things improve, which is why I'm going that route now, but I still feel like I should've seen more improvement based on how careful I've already been. I suspect you're going to say I'm foolishly optimistic? Sigh!
Hoping to get some advice from all of you wonderful people... Thanks so much to everyone for the fantastic information available here!
I was diagnosed with Celiac at the Mayo Clinic in Rochester almost three years ago and have been rigidly gluten free since then. I do eat out, maybe more than I should, but I'm really, really careful about where I go, what I order, etc. Also eat mostly organic, unprocessed whole foods at home.
Unfortunately, I had another round of tests done recently and it's not looking good! All of my numbers, while slightly improved, are still really high, and my biopsy still shows villous atrophy just as severe as it was three years ago.
I haven't been back to Mayo because, honestly, I wasn't thrilled with the experience and it was very expensive and a really long way for me to travel. (I live in Michigan.) It seemed to me at the time like I could just follow the diet and continue to monitor my vitamin deficiencies and other issues without going through the hassle and expense of another visit to Mayo - having gotten a very clear diagnosis, I didn't see the point of returning.
Now that I'm three years into the diet and still dealing with a lot of symptoms and not much improvement in my test results, I'm thinking it's time to see a specialist again - but I don't know where to go! Or even, really, if I should go at all!
I have enough neurological issues that I really want to see someone who can address those questions, and Mayo didn't even mention them. I didn't worry about it at the time because I thought the diet would solve everything. I'm also thinking maybe I need to be checked for refractory celiac?
On the other hand, I've just spent an entire day reading everyone else's posts about their experiences at the specialty university/research clinics, and, once again, I'm questioning whether or not it's even worth it! Can they really tell you anything more once you know the diagnosis for sure? Are they just going to tell me to keep following the diet? That would really feel like a wast of time...
I'm so frustrated and I have no idea what to think. I've pretty much lost my career to this stupid disease already, so I'm willing to travel anywhere to figure out why I'm not improving... I've considered Dr. Murray, Dr. Green, Dr. Fasano, U. of Chicago, etc., but none of them seem to have compelling info available on what they can actually offer someone who needs continuing treatment rather than an initial diagnosis.
Sorry for the long post... Thanks in advance for any thoughts you can offer. I'm feeling pretty desperate and frustrated!
Hey armywife - I'm also dealing with a new diagnosis, although not as new as yours. I've been gluten-free for almost three weeks now, but I had some time to prepare for it mentally because of how my regular doctor (who is no longer my doctor) handled the original blood test results. My first positive blood test came back right after Christmas and she told me to go gluten-free right away, before getting a biopsy to confirm. I wasn't able to get an appointment with the GI doctor she referred me to until early February, and he wanted to be sure I'd have an accurate biopsy because a positive result means such a huge lifestyle change. He had me do a brief gluten challenge and I had my biopsy about three weeks ago. I'm a total mess too! Unlike you, I have TONS of digestive symptoms (see screen name) but I also have low iron, dizziness, fatigue, migraines, etc.
Anyway, since the process of my diagnosis allowed me a little more time to prepare for the reality of the diet, I'm sending you a link to a book that I bet almost everyone on this forum has read:
http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Celiac-Disease-Revised-Updated-Epidemic/dp/0061728160/ref=sr_1_2?ie=UTF8&s=books&qid=1270043485&sr=1-2
With all the reading I've done over the past few months, Dr. Green's book has been far and away the most helpful thing for me because it really explained - to the extent possible - why Celiac can be so weird. I can't tell you how many times I would read about some random and seemingly unrelated condition in this book and a little light would go off in my head, like "OMG! THAT'S why I had that!" So, so helpful. Maybe even though you don't have digestive symptoms (yet!) this could help you make the connection between the symptoms you do have and the diet you're stuck with. And, more importantly, give you some ammunition to get your family on board!! They need to get it, too, and start supporting you!
The other thing I wanted to share is that the people on these forums are awesome and there's so much great info here. I was expecting, based on what I'd read, to start feeling much, much better after being on the gluten-free diet for a short period of time. Two weeks in, and I was still feeling awful, even though I'd already eliminated dairy, too. I was, however, still drinking coffee and alcohol (no beer), eating/drinking lots of soy, and eating all kinds of new gluten-free products - spaghetti, bread, etc. I thought all of that was safe! I spent a lot of time reading everyone's posts here and decided to try an elimination diet, so now I'm on my third day of having no coffee or alcohol, no processed foods of any kind (including gluten-free), and no soy. I've also cut out nightshade veggies and the onion/garlic family. I know that sounds super overwhelming (and it is!), but I finally feel so much better! The best part is, thanks to the forums, I'm sure I'll be able to have all that stuff again (obv except gluten) after my system has had time to heal. Progress, at last!
Sorry if that long list of eliminated foods freaks you out a little (it freaks me out too!), but I thought it would be helpful as you're starting out to know that you might make more progress, and faster progress, if you figure out which of the other potential irritants might apply to you - if only in the short term. I feel so much better, I don't miss them a bit. And it's not just my GI symptoms that have improved, it's the energy levels, dizziness and headaches, too.
At any rate, sorry for the super long post, but I just wanted you to know you're not alone out there and that arming yourself with lots of information is incredibly helpful. Read up, and good luck!!!