FG in DC
"It sounds like you are doing pretty well with avoiding gluten., For eating out I sometimes take my own food with me, or eat before hand and just get a drink or a side dish of veggies. I sometimes take fruit when I go out as it is easy to carry. I think it is harder when you don't have symptoms to be sure that you are gluten-free. Just no way to know for sure. "
This was the part of the decision that I decided not to do I'm not going to bring my food (unless it is a pizza joint or something where I have no option) or eat early. I go out and speak to the chef, order the best I can the naturally gluten free items(usually I've researched the restaurant if they have info on the internet) and just hope for the best. I won't let this rule my life, if my symptoms were more serious I would do just as you thought I'm not going to make myself sick for anything.
I defiantly know how you feel about being put off on the diagnosis, I have had terrible gas and often times infrequent trips to the bathroom most of my life. I would go through spells where I would have 4-6 bowel movements per day for the last 20 years. I was told by to MD's that I had IBS (common mis-diagnosis for celiac) and the symptoms fit so I just assumed for the last 20 years it was IBS. I recently moved to Memphis from Charlotte and took up a new doctor and when I went it to get established (as I was all doctors, Dentist, Eye Doctor. ie) I mentioned to him that I had IBS and he asked some more questions. I told him about the gas problem, that a few time a month I would have spells of diarrhea, and occasionally blood in my stool all which do fit the signs of IBS. He wanted me to get checked out for it though, no other doctor ever mentioned it because there isn't a test for IBS, so he recommended a good gastro for me to go see which lead to my diagnosis.
I'm really glad since the diagnosis however, the gas, diarrhea, and blood haven't occurred since within 2 weeks of going gluten free. And as I said I'm a healthy person, exercise regularly, and eat healthy so I stayed away from sweets, most bread, and fried foods to begin with so the adjustment to gluten free good hasn't been a really big deal for me. I do miss the occasional beer though and don't even bother with the gluten free beers Redbridge is the best I've found so far but they still aren't even close to my Michelob Ultra. The hardest part for me was that so few restaurants you can trust to properly prepare you food, so I made a decision after talking to my doctors and getting their opinion to be as careful as possible, talk to the chef/manager, don't order foods with gluten, but go out with friends and eat where I want to. For example for lunch today we went to a Mexican restaurant I avoided the chips, the were corn but appear to have been fried, got the ACP (Grilled Chicken with rice/beans) and ate and talked with co-workers. Can I be sure my message was relayed and the food handled properly, of course not and it wasn't any chain so all I have to go on was their word and I've already found out on a few instances I have been lied to and did eat a gluten containing (naturally gluten free)product even thought the chef told me otherwise.
Coming from a family that has a strong medical background and hearing stories from family members that they had a patient today that has messed themselves up by a self misdiagnosis or self medication of some sorts I can't agree with anyone sharing medical advice. There is a lot of great literature on Celiac's disease online, and I've spend hours researching it and a lot I've printed off and taken or emailed to my doctor or dietitian with questions about. But that's just it, I asked their advise on it rather than something that was typed up by who knows who. My doctor and dietitian both are happy to take all the emails I send them and of course don't charge me for it. Two articles my doctor told me he would have to get back to me on and research it himself (hopeful drugs in the next 5-10 years future). By saying you have Celiac's but not getting diagnosed you may actually have something more serious. Not that a gluten free diet (Celiac Medicine) will hurt you but you may find that you rather have something more serious like cancer of the stomach or intestine and now that it's 3 years later and you did nothing other than eat gluten free it is no longer operable. Or that you do have Celiac's but you also already have cancer and although the gluten free diet worked it's the same 3 year later scenario and too late. This is why I can't be certain but I doubt you'll find any doctors on this or any other forum giving medical advice to anyone about something as serious as Celiac's, because they can't give you "for sure" advice without seeing you first. They can inform you of what to do if you have Celaic's but if your only diagnosis is based off the fact that you feel better on a gluten free diet they can't be sure you have it. It could be that you only have a gluten allergy or even that you can handle gluten fine but are severly allergic to an ingredient in the chicken nuggets that you buy and eat so when you cut them out on the gluten free diet you feel better.
"It sounds like you aren't cheating (other than your exposure to cc) and it sounds like you are taking precautions when you go to a restaurant. If your symptoms are gone and your blood tests are good, then it looks like to me that you are doing OK. You may want to do yearly blood tests to monitor your exposure to cross-contamination . . . and please please please don't go for that occasional pizza and beer . . . stick with your Jack & Coke and a nice plate of (gluten-free) nachos."
Thanks for your understanding and response I am very careful in what I eat and take every precaution possible to prevent cross contamination and have another blood check in 2 months. I had my first three only 1 month apart and for the first year I have blood checks every 3 months to monitor my progress and make sure everything is working. As well as the annual check ups and preventative colonoscopy already scheduled.
Again as I said in my post my doctor told me this information saying it was personal advice but not his medical opinion. He said since I don't have symptoms if I were to cheat once or twice a year the results likely aren't going to be life altering, although I have no plans to cheat. I am also very careful when I go out to eat but I'm imagine there are times I've received cross contamination and I'm very aware that even though I don't have any symptoms and my blood work shows promise there are still potential long term effects of this.
The reason I wanted to post my story is because there is very little support that I've found on all of the forums. Everyone always wants to play doctor and criticize everyone when they do have issues. We can do the best to help each other and talk each other through it but for the medical questions that's why we all have doctors who can help us you don't go to forums for medical advice that's what your doctor is for. Forums are for discussion, help with gluten free foods, recommendations for doctors, support, but not to beat someone down for their choice in how they cope with their disease.
Also as a side note my wife is an MRI tech, my mother is a Medical Teacher, and my grandfather (now retired) was a brain surgeon and all agree that I should take my doctors advice as he is the one who is treating me, has done my endoscopy, and colonoscopy, and knows my individual situation. At my grandfathers request I also have consulted with dietitian about what I should/should not eat and the best possibilities of cross contamination as well as my Medical Doctor and a private Medial Doctor who is a close friend.
Will increasing my risk of cross contamination from certain restaurants possibly result in damage, yes the chance is there so it isn't a good idea by any means and I don't recommend it. However there are 50 million smokers, 33% of the US population is obese, 70% overweight, and 33 million American's admit to driving under the influence of alcohol at some point (yea I just Googled all those lol) and I don't recommend any of those either. I known people with diabetes who sneak the occasional sweet or bread, it doesn't make it right but they are aware of the cost. I equate these risk (all of which none fit me) to the same risk I take if I order the Domino's Gluten Free Pizza (only twice since July).
In my case yes and no, I was diagnosed in July with Celiac via blood work and endoscopic. I have had gas problems for years and was told for years I had Irritable Bowel Syndrome. After my diagnosis I took it pretty hard and went on a gluten binge for about a week, then I went entirely gluten free. I have been gluten free since my diagnosis even though my gastroenterologist has told me that if I don't have symptoms cheating once a month wouldn't really hurt me very much. He did however tell me that if I'm not having symptoms not to worry about the cross contamination so that is how I often cheat. I'm very very insisting when I go out to eat that my food is prepared properly but I also know I do get cross contaminated regularly as most kitchens don't adhere to the guidelines I ask like they should.
This advice from my doctor however wasn't medical but rather as he claimed it "as a human being" the problem I was coping with was the loss of companionship. In America going out out to eat is a large part of out social interaction, when my co-workers want to go grab lunch everyday I'm not going to ask them to limit themselves to only two or three restaurants so I go out, order appropriately, and hope for the best. So far since I've gone gluten free, even with the cross contamination, I have noticed a 100% improvement the symptoms of gas are gone, and I feel much better. My liver enzymes were very elevated and now they are back to normal as of my last blood work about a month ago. I do my best now when I do go out however, for beers with the guys I get a Jack and Coke or mixed drink and never ever intentionally eat gluten.
As far as my choice however I'm happy with it, although I may pay the price one day, I'm not going to sit at home by myself and be a hermit and never go out with friends for fear of how it is prepared that I may not know about. I'm 30 years old, no kids so my social life is important to me and if the price is that this will hurt or kill me one day then that is a price I will have to pay. But as my doctor told me if it were him in my shoes, symptoms were minor, and there was a Superbowl party with the guys, he would drink beer have pizza and enjoy a good time, after all there are worst things than dying. Just make those occasions very rare.
I felt the need to speak on this because everyone is so against it for the health impacts, and they are true however for many people, especially the younger crowd, this disease can ruin your entire social life. Honestly I don't care about the food part of it I haven't missed the gluten foods at all I was a really healthy person to start with so naturally didn't have much gluten in my diet. Staying away from bread (carbs), fried foods, beer is actually a healthy thing rather your can consume gluten or not.
Anyhow I spent months browsing forums just looking for one person to say live you life and be careful and never found it so I wanted to say it myself for anyone else in my shoes.