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It's been years since you posted this, but I was hoping you'd come back with an update. I have CVID as well . I had the scopes done and samples taken and they claimed celiac disease. I changed my diet and zero improvement for over a year, in fact I got worse.
In that time I researched and found us CVID patients typically have something that even under the microscope looks EXACTLY like celiac disease but it is not. It's not because it has nothing to do with gluten.
If you haven't made a lot of progress talk to your doctors ASAP.
Sorry to resurrect this thread, but there is one in Highlands Ranch, CO. We got a coupon from them. I guess they have been there a year, but just recently started doing the gluten-free at this location.
We tried them out and it was wonderful. Had the Ultimate minus the mushrooms, would have been about $20 if it weren't for the 25% off coupon.
For those living in Colorado we have been fortunate to have Beau Jo's using Deby's crust, but this was much better in my opinion. Then again I may be spiteful as I loved the mountian pie at Beau Jo's for a few decades before having to switch.
Anyway, in terms of flavor I recommend Garlic Jim's, however, I am really doubtful od no cross contamination for those that are more sensitive. I noted even on their menu they recommended those with a wheat allergy not order it as it is too risky.
I didn't get to see where they prepared the gluten-free ones of if they come pre-made or what. YMMV.
Early on in my gluten-free diet I was very label conscious and still am, but I got lazy. My fiance is also very good about double checking labels. Anyway, we found this great local salsa because we love mexican food that appeared to be gluten-free. We kept buying ti and buying it. Then one day we were at the store and I think they were sold out or we just wanted to try another local made salsa, grabbed it and went.
About 3/4 of the way through my first taco I just happend to be reading the bottle, you know, the history and all that, then the ingredients...Barley Malt as I take the last bite of my first taco.
My second big failure, fudgepops. I think it was because we didn't have them for a long time, my fiance bought them, and remember, she is very good with labels. Well they have malt, Doh Doh! It was one of those "I thought we bought these before" responses.
Even then, it's a good idea to always check labels.
On those AMy's Pizza's I almost made that mistake once myself. I really miss pizza and none of the frozen pizza options cut it for me anyway sadly.
Mistakes are good as long as we learn from them. I bet the next time you are hungry and craving pizza and at the store you will look twice .
About midway through 2008, which was about 8 months into my gluten-free diet I had a freaking meltdown at the grocery store. My fiance had to contain me. I was at my wits end, all teh gluten-free bread was sold out at whole foods, all the frozen dinners that are gluten-free that I will eat were sold out. I am in competition with a few other people in my are who regularly clear out the freezers at the stores.
I went to 4 freaking grocery stores near me looking for something, anything, they were all sold out of the stuff I usually buy and will eat. I Was furious and started freaking out and getting irate.
Just the culmination of many months of being unhappy with the new way of life and the fact that we don't have the time to bake our own breads and prepare lavish meals so making dow ith known gluten-free items is the best option for us.
I did calm down and proceeded to go home and be in a bad mood all night and lose sleep over it stupidly.
I handle it much better now, and there are more and more options appearing all the time near where I live so it is really helping out.
From everything I read on here and people I have talked to in person I think we all go through it. That point where we just have had enough and feel like there are no other food options.
I will let you know, in Silverthorne (you would need a car to get there) there is a place called the Sunshine Cafe. In my pre-gluten-free days I used to love eating there when I was in the mountains. Back in November as my Dad and I kicked off the ski season we decided to stop there. I figured I would gamble and worse case order a naked burger or something.
While waiting for our table I talked to (I believe the owner) and asked if they had a gluten-free menu, he said not yet, but they are working on getting one together sometime Q1 2009.
We sat down to eat and everyone there is always really nice, the server was very helpful as I decided to order the enchiladas. She was able to confirm the green chile that came on them was made with no gluten ingredients and the corn tortillas were gluten-free as well as the chicken or chorizo options.
I love Mexican food so that's why I went for this option. Based on certain events in my life I do not guarantee that this stuff was in fact gluten-free, but they are aware of what being gluten-free is and are willing to check on ingredients.
Good luck and have a safe trip. The mountians are getting some good snow today, hopefully it will continue so your trip will be perfect.
Follow up: I love this bread, I also frequent the Udi's Bread Bistro in Stapleton. They can make any of their sandwiches with the gluten free bread and they often have a couple loaves in stock if you swing by there. I tend to go trhough about two loaves a week! With all the old gluten-free bread I would be hard pressed to get through a loaf in a month.
One of our last visits, the day after Christmas I went to buy some bread because someone cleaned house at the King Soopers near me (all 3 of them). I got home to find that it was not their usual White Sandwich bread, but Brown Sandwich bread.
Looked and tasted like wheat bread, but of course is gluten free. Haven't seen it on the shelves at KS yet so maybe it will be there soon.
I do not have an immune system, which sounds odd. My intestines DID NOT heal with a gluten free diet, the gluten-free diet made no difference in my symptoms, in fact I got worse. I do sadly have a good understanding of what steroids do to the body. Thankfully it was a short term thing.
I too was raised that a Doctors answer was THE answer. It took my own determination to understand that Doctors don't know it all, even the specialists. Does it mean they are accountable for not picking up on something? Maybe, you could argue it both ways for days probably. If we come up with a medical system that will scrutinize every breath a Dr takes no one will become a doctor. They are already held to a much higher standards than most professions, they carry malpractice insurance which is quite costly. All because we expect them to be perfect, mistake free and all knowing. Of course we always read stories about the few real wackos out there.
Lawsuits are a necessity sometimes, but if it is because a Dr only spent 5 minutes with you and you listened to their recommendation then what is there to sue them over? Because they didn't insist on additional tests? That doctor believed you had IBS, that was their diagnosis. You accepted it. It wasn't malicious, I can't even say it was ignorant if based on the information they were provided that believed that was your problem. In all honesty if my immunologist at the time did not send me to a GI doc specifically for celiac disease I'm sure if I did seek one out they probably would have said IBS as well. And I probably would have gone on longer complaining of symptoms, but I would have found another Dr without a doubt.
I relate the human body to a car, probably because I love cars. If you take your car into the shop because there is something wrong, your mechanic is going to diagnose the problem and recommend a remedy. You can choose to agree with it, or choose to go to another mechanic. If their remedy seems reasonable to you, then you will allow them to fix your car. However, sometimes, when they thing they have fixed the problem they haven't. What do you do? You can go back and insist they fix it right, maybe give them a second shot. Or you will take it somewhere else and have someone else do it. What if they diagnosed it incorrectly? And you spent $1K on repairs. Are you going to sue them?
We put more time an energy into making sure we have cars that run properly that we forget about taking care of ourselves the same way sometimes. We put more time and energy into buying a car than we do making sure we are going to the right doctor or getting the right care.
My situation is probably a bit more unique than most celiac patients as I have a freakin' rag tag team of doctors monitoring my every move. I can't get away with anything.
You are doing the right thing educating yourself and taking control. Hindsight is always 20/20 they say, but they are always trends in diagnosing. In fact I can probably pinpoint the height of IBS diagnosis to about 4 years ago. Which can fall in line with another respondents comments about them diagnosing to the drug companies desires. The sad thing there is some truth behind that clearly.
We are very fortunate to live in the information age, we have a lot of information at our fingertips and it is expanding daily.
As I said before, and with all my heart I want you to feel better and live a happy life. I would never wish ill will on anyone who is trying to make themselves better. I just don't agree with your desire for legal action as it is my opinion that there appears to be nothing done wrong legally. Then again, that is just my opinion as I have no vested interest in either side of your claims.
Just try and keep your head up, also, some states have programs for people without insurance or for those that are otherwise uninsurable. I'm not sure if your state has any programs or if you have already looked into anything like that but you can probably find something online if there is.
First off, I'm sorry to hear you have had a rough four years, however there are some problems with your post:
As I recall, and I will quote your post some more, your GP sent you to a GI doc, which is what they should do. They are a general practitioner. If the condition is something they cannot confidently diagnose or feel that you can be better diagnosed or receive better care at the hands of the specialist it is their responsibility to send you down that path, which they did. For the sake of pointing out what you said:
The next item is what I have the biggest issue with:
Well there you go, you even stated that a blood test may not be 100% accurate, however, I believe the GI doc should have investigated further. Even if they were unaware that a positive test for DH would be equal to a positive test for celiac disease they would probably recommended scoping you from both ends and taking biopsies that way.
Regardless, you had a diagnosis for celiac disease, you were sent to a specialist who basically told you you didn't have it, I feel like you are leaving out some details from that visit, but maybe not.
In the end, if I had a diagnosis, and another doc told me they didn't believe it was true, I would shoot for two out of three and find me another GI doc right away to get some confidence.
I can understand why you feel the way you do, but only one doctor, per your post stated you didn't have it. The other did based on the tests and sent you to a specialist. I suspect to confirm.
It is ultimately YOUR responsibility to make sure you are getting the best care possible. No one is going to do it for you. Some doctors are going to misdiagnose, or feel you don't fit the bill for the diagnosis. If they are unwilling to really investigate your symptoms then find another doctor. Just just plod along and when you realize later that you really have something going back and wanting to sue someone over it is just ridiculous.
I really do feel for you, it is hard to live your life feeling miserable and wondering whats wrong when it seems like there is no answer. The unfortunate thing is you had the answer and you chose to disregard it because one of two doctors told you that they thought you didn't have it.
The bigger issue now is, as you have claimed, you have diagnosed yourself. Go see a different doc, and get the answers again. For your own sake. Take an active role in your medical care, if anything seems fishy or does not seem to jive with what you are expecting, get more opinions and then make a decision from that.
One big problem is that we don't put a lot of effort into picking doctors or medical care. We put more effort into buying a car. We also like to believe that these people that went to school for all those years and charge us and our insurance all this money have all the answers. That they will always 100% of the time give us the right answer. In reality, that is not the case and that is impossible. The human body is an extraordinary thing that just baffles my mind sometimes.
Anyway, I do apologize if my post seems crass, but really think long and hard about what you went through 4 years ago and realize that was 4 years ago. You chose to continue living uncomfortably all this time when you could have continued to pursue your symptoms.
As an aside, so you know I'm not just blowing smoke and trying to argue I have been through it as well. 18 years ago CVID was staring multiple doctors in the face, none diagnosed it. Last year, after finally having been diagnosed with CVID one of my immunologists believed I might have celiac disease because I was losing my Igg at a higher rate than I should have been. I went and saw a GI doc. He had no idea what CVID is, then again, most don't. I got scoped and biopsied, I was told I had celiac disease. Plain and simple.
Diet change made no difference in my life at all. However I went along after reading on here it could take a bit to heal up (doc told me that too), but still, things continued to worsen. In the spring I was doing research and found that CVID patients can have a something that looks just like celiac disease, but it's not celiac, just appears that way.
I got me some new immunologists and a new GI doc. I took some steroids, instant and I mean instant improvement. I was recently given the okay to no longer being fanatical about my diet and I have not had one problem.
Just goes to show, doctors with the best intentions and even having real data in front of them may not always present you with the most accurate answer to your case.
Good luck with whatever you choose, and I really honestly hope going forward your life is much better and much more comfortable. We are all human beings and we all need to work together.
I'm not sure what tests your docs have run since your diagnosis, but they should be checking for bacteria in the small bowel. Also, when you don't have the big D does the stool float or sink. I hate talking about that stuff, but it is a fact of life I guess.
Anyway, you can spend a week collecting samples for your docs at their requests, get a small bowel series which is kind of an old fashioned test. They make you drink barium and take x-rays to make sure things are moving through your system okay.
For what it's worth, I have been gluten free for just about a year now and the improvements are nil from the diet. I am going through a ton of various tests with a new GI doc now, but my situation is quite different than many here. Still, the troubleshooting can be the same.
Others mentioned going on a bland diet, which is not a bad idea in trying to remove potential hazards from your diet. Make sure you get enough vitamins and minerals, your doc/nutritionist may want you to take supplements because of your age and the fact that it can be more challenging for celiacs to get all the vitamins and minerals they need.
Like everything else, they need to be gluten-free.
I know this is an old thread and I thought I would chime in. I know this involves your young child so it may not be the same...
I have CVID, and they say I have celiac. Currently from research on my own and some new doctors we are working on disproving the celiac disease thing (for me) as patients with CVID can have something that almost mimics celiac disease. The difference is, your body isn't attacking itself over the protein, you just have have the damage from other causes. I also got a whole big plate of ravioli recently from a restaurant that serves a gluten free version and I had zero problems. In the midst of a myraid of additional tests currently, lucky me.
On to the items I wanted to bring up that may help out. With celiac disease it can cause a drop in IGg levels because it gets lost through the gut. Changing the diet to a gluten free diet would solve the celiac damage and in turn should cause those IGg levels to come back up.
CVID just doesn't go away, though it is supposedly curable for children under the age of 2 via a bone marrow transplant or something along those lines. I was diagnosed as an adult, I get monthly infusions of IGg, it really is a miserable thing.
Long term health care costs will be much less if your child has celiac disease and they are young enough to not "miss" any foods.
I wish you the best of luck, if you want any more information on CVID let me know and I will do my best to answer questions.