This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Personally speaking, I wouldn't be on a gluten-free diet unless I was absolutely sure I needed to be. I have no diagnosis of anything, none of the tests points to anything positive, but I am absolutely sure I am gluten-intolerant, because of the way I feel when I eat it. In fact, I had to prove it to myself through multiple trials because I sure didn't want to be doing this unless I absolutely had to. In a bizarre way, that works in my favor because I really couldn't ignore my symptoms and eat gluten even if I really wanted to.
You don't have that advantage. In fact, from what you've described, you have no symptoms and even your original diagnosis is in question by the very doctor whom you originally went to see. By your own admission, you say that you may have misunderstood, and apparently your doctor is finding nothing conclusive in your chart. That sets off a bunch of red flags for me. I somehow doubt that your doctor would have forgotten to write down/file any of the positive test results.
Now, I know that there is such a thing as silent Celiac, but even for that, in the absence of symptoms, there has to be some kind of evidence that you have it in order to obtain that diagnosis. With no symptoms, some kind of test would have had to turn up positive to get a diagnosis of Celiac, and apparently you don't have any evidence of that.
Personally, if it were me, I would jump at the chance to find out whether or not I truly had either gluten intolerance or Celiac disease. It is harder to prove that somene *doesn't* have Celiac/Gluten Intolerance than it is to prove that they *do*. So it will be difficult for your doctor to prove that you don't have it. She would only be able to prove that you do. If she fails to do that, she still will not be able to prove that you *don't* have it.
It seems to me that the decision will then be yours. Are you willing to attempt going off a gluten-free diet to see if you have problems? You would be able to monitor your own symptoms and would notice any visible adverse effects like diarrhea or intestinal pain, bloating, etc. If you had no visible symptoms, but you really did have Celiac, (which your doctor somehow missed logging the proof of), you would risk getting sick and damaging your intestines. I assume that you and your doctor would want to work together to monitor your progress for this.
I know that I personally would certainly be willing to take that risk and challenge the original diagnosis and monitor the situation closely. In my opinion, I would be no worse off than when I first showed up for testing and was happily eating gluten. *Something* - either physical reaction, family history, or positive/suspicious test results, would have to prove to me that I needed to be gluten-free.
For me the problems definitely would have come fromt he waffle fries at Chick-Fil-A. They cook them in common oil which probably also fried breaded things. I was initially happy because I thought I could eat french fries from fast food restaurants - made of potatoes, so should be ok, I reasoned. But they made me sick every time. I reasoned it was because they must cook breaded things in that oil.
I would also wonder about the salad dressings. Many premade restaurant salad dressings have gluten in the ingredients. It may also be that salads prepared out could have had croutons on them that were picked off.
Just a few things I can think of.
So sorry to hear you are not feeling well. I lived off of smoothies for quite some time until my insides healed.
Good luck to you!
EDIT: Also gotta watch the tortilla chips. I assume you mean corn type taco chips, not flour tortilla chips. Even the corn tortilla chips are frequently made with wheat flour. Gotta have the restaurant check the label.
Are you sure the eggs aren't bothering you? For me it was not only gluten intolerance, but also egg and honey. I've been gluten-free for 2 years now and still can't eat eggs.
Also watch for the obvious offenders like chocolate, caffeine, mint, and make sure you don't eat or drink for several hours prior to going to bed.
The area of pain that you describe sounds like thyroid, so please have that checked out. That is right where your describe - in the vicinity of your adam's apple. To check it, your doctor will put his/her fingers there while you swallow a drink of water. It would definitely be prudent to have this checked.
Wow, that is a sticky situation! I'd be curious as to how your daughter perceives the situation? What is her inclination as to how to handle this - or is she looking to you for advice? You've gotten some excellent responses, which I heartily agree with, and there's not much more to add.
I agree with everything everyone has already said, but I also understand the position you are in and your stated desire to keep things as pleasant as you can. Wow. I think if your daughter and fiancee do not intervene to change things AND you all still want to try to grin and bear it, AND if your daughter is not highly sensitive to cross-contamination from all the gluten in the air and from touches, hugs and kisses, then your only options are to bring in food that can be eaten or to eat before hand.
But these would be my choices of LAST RESORT. I certainly hope you will try to discuss this with your daughter and see if some of the other suggestions offered could be attempted first.
Just on the face of it - this sounds like there may possibly some loyalties/ties to the local pizza parlor? My DH is Italian, and I am lucky that I did not develop gluten intolerance when I was younger. My mil would have been hard-pressed to feed me, LOL. Everything was pizza, pasta or breaded, LOL! She loved to cook, though, and I know she would have tried, bless her heart, but it would have been a challenge for her.
Hopefully, after a little time, maybe cooler heads will prevail. Know too that this diet and lifestyle is quite an adjustment - not only for the gluten intolerant, but for the family and loved ones also. It takes a while for it all to sink in and people to learn how to deal with it and fit it into their routines. At this point your daughter probably doesn't even know how she is going to deal with this diet and lifestyle. Maybe your daughter is lucky and this will calm down and everyone will come to their senses and readjust their expectations.
I'm sorry to hear you don't feel well and hope you are feeling better soon. I'll be watching replys here, for I also miss and would love to find a ready-made chicken noodle soup. I was eating Campbell's chicken with rice soup for the longest time until I finally figured out it still had wheat in it. I couldn't figure out what was still making me sick! Carelessly, I had never looked at the label - who would have thought chicken with rice would have wheat in it? So I've since given up on all the Campbell's soups.
I've not found many good ready-made soups, and even fewer that I would want to have when sick. Amy's has a couple of different gluten-free tomato soups. One of them I add a little milk to and it makes a passable substitute for the Campbell's tomato soup we were all so used to, but it' too heavy to be interested in when sick. There's another company (sorry - I forget who - I'll try to look it up) that makes a passable garden vegetable soup that is lighter than tomato soup.
Other than that, I'm lucky because my dh does cook, so I get him to make me a favorite soup called Mediterranean Vegetable soup - which is very good when sick as it has a light broth, vegetables, a little rice (substituted for orzo) and chicken. But this is not much help to you now. Sorry. Hopefully you'll get some more helpful responses.
First of all - congratulations on making All State!! Kudos to you! You will have fun.
With regards to your food, I don't believe I would want to wait until you got there to handle it, or you might either be very hungry for 3 days - or too sick to enjoy the experience. Your director probably doesn't understand the difficulties and intricacies of being gluten-free, nor the consequences of mistakes. In my experience, eating gluten free is very different from other food allergies because gluten is so pervasive in our food base. It is likely there could be very little for you to eat, or you could have a very miserable bus ride home.
If it were me, I would opt to contact the Mariott ahead of time. Actually, you might want to have your mom do it (I assume this is high school All State?) That way you can plead innocence with your director and let your mom be the fall guy. Anyway, after calling to determine the appropriate person, I think I would probably send an email explaining your condition and listing what foods you cannot eat and which ones are safe. I'd probably keep it along the lines of the dining cards that list not only grains, breads and flours, but also some of the hidden sources of gluten like soy sauce, malt, maltodextrin, caramel color, etc.
Actually, I would expect them to respond with reassurances and the name and number of someone to assist me. After a few days I would follow up the email with a phone call so that I could actually discuss this with someone to be sure satisfactory arrangement are made. I'd be sure to offer to pay any extra costs if needed. Mariott is a top hotel and I expect their staff would be familiar with special diet accomodations, but I think they would need advance notice to provide you with alternatives.
I've been a band parent and chaperoned many band trips. Although I wasn't gluten intolerant at the time, I know what kind of food is served on these trips. Breakfast is usually the Continental breakfast served by the hotel, so you will be limited to fruit, yogurt, and juice - if you are lucky. Lunch and dinner will be the usual American fare. If it is pizza - you will be limited to a salad. You would have to ask for extra protein to make it a chef's salad, so you can at least have some protein. Dinner might be pasta and salad, so you would have the same issue there. If you are lucky, it could be chicken breasts and salad. Will the chicken breasts be breaded, will the salad come with croutons, what kind of sauces will be on the chicken, what kinds of dressings come on the salads?
There are all too many places to slip up. Usually the group is always rushing from here to there and has a limited amount of time to get through the meal, so if you have special requests or need to return or exchange your food, there will not be time. I'm afraid you will either be very hungry or try to make the best of what you are given and end up sick. I just don't think it will work out well for you without some advance planning and forethought on the part of the event staff. I actually think the event staff would appreciate the advance notice and will probably go out of their way to see that you are well taken care of during your stay.
You might feel that you don't want to stand out among your friends, but you probably won't have to wait for your food, your food will probably look better than that of your friends, and your friends will probably wish they could be as lucky! You want to be able to enjoy your time there and not be sick or hungry your whole time there, so I think you should definitely contact them ahead of time and see what can be arranged. I think you'll be glad you did!
Yeah, and you can vote as often as you want - it's not limited to once per day. Although they might state that - it doesn't prevent you from voting multiple times per day.
The stories are good. I hope this gets some mainstream attention. I love the people who wrote in that, although they do not have food sensitivities, their friends and loved ones do, and they want to know some things to make for their friends/loved ones. Bless them! This shows that there is a need even in mainstream society - not just limited to those with food sensitivities, but all those who know and love us.
Don't forget - the numbers are a percentage, not a tally. If another idea starts getting more votes, eventually, their piece of the pie will get larger, and others will get smaller cause they've all got to add up to 100 percent.
We were tied with pets at 32 percent, but the MSLO employee cookbook is on the move. The votes have been increasing by several hundred every few seconds as the MSLO employee cookbook has risen from 13 to 18 percent and Allergies mag has dropped down to 28 percent. Must be on some other blog somewhere - or lots of employees voting!
Anyway, it was nice for Alexis to come up with the idea and bring it to the forefront. Hopefully it will make mainstream food shows and magazines aware of the market and the need to take special food and diet populations into consideration when planning menus and creating recipes.
When my insides were in that bloated, inflamed condition, I practically lived off of smoothies. They were oh, so soothing. I made my own from frozen fruits and rice milk. I'd put the frozen fruits in the blender, add the rice milk, and blend till smooth. My favorites were made with pineapple, blueberries and mangos. THey were my salvation.
Many thanks to all who responded. I received some good suggestions and even just to have people respond is comforting in and of itself when one is worried and concerned.
I'm sorry I was unable to respond to this sooner - I, myself, have gone back to school, and I was in the middle of a midterm project, along with some very stressful, hectic times at work (still ongoing) and in the middle of seeing my DS off for the summer with Drum Corps International. Because of my school project, I avoided this board and did not even read - as then I get sucked in and would not have been able to get my project done.
In any event, my son at least has a diagnosis of IBS - made by the health center at the school. We will of course be pursuing more accurate diagnosis if possible, through food log and testing by GI doctor. However, he is gone for the summer, so this will have to wait until fall. Also, for the summer he is in a situation where it will be very uncomfortable for him to have GI issues, so that may help him pinpoint the offenders all the more quickly.
In the meantime, this incident has pointed out to him the importance of him being able to pinpoint what foods are bothering him and then the importance of avoiding those foodsthat do bother him. He will be visiting disability services to see if they can help in any way.
He now knows the importance of talking with his instructors AHEAD of time (as I had expected he would be doing during this past term, but didn't, grrrr!), and he will be doing this next year. He is a music ed major, so most of his classes are participatory in nature, so we understand the necessity of absence requirements. But I do feel that the professors might have some leeway or possibly some makeup arrangements may be made if he works this out in advance. And believe me, I have made this point VERY clear with him.
He has written to his instructor, explaining the circumstances and asked about the possibility of getting an incomplete in the meantime. We will see if anything comes of that.
Another thing is that all his classes next semester are later in the day. This class was an 8 am class. And no, he did not miss because he was just unable to wake up for class - he's very good about getting himself up for early classes. It's just that it seems all his GI problems seem to happen as a result of the evening meal and give him problems during the night and the next morning. Usually by late morning and early afternoon he is much better. So that is another clue for him to pinpoint what he is ingesting that is giving him problems.
I have had this issue for about the last 4 years now. I have seen a cardiologist - was told nothing dangerous, and put on Atenolol, which resolved the issue. Since having all my GI issues I stopped all medication and went gluten-free (mostly) 4 months ago. I didn't need the medication during almost all this time. I have noticed flare-ups lately, and I've done some experimenting with my diet, but i haven't yet traced them to gluten. It might be, but I've not been willing to try gluten again yet, so I can't tell yet if this is related or just coincidental. I have also noticed a somewhat elevated pulse - about 115 - around this time of experimentation, but this has gone down now to about 85.
This isn't much help, I know. I suspect these could be related, but I don't have enough to go on yet. I definitely have reflux issues, though, and they also seem to be induced by gluten, among other things, like spicy food and stress.
How do kids deal with this illness in terms of absences at college? Have you missed classes due to GI issues? Have you been able to work things out with the instructors? My son has had issues with this in school. A lot of his classes are participatory classes and, so far his instructors have been unwilling to bend, despite the notes he brings from the clinic. He is allowed 2 absences per class. Period. And he can't bring a note from the clinic every time. This is really becoming a serious problem.
The reason for the absences were all due to illness from GI issues. He knew he either could not make it out of the bathroom to get across campus and sit in class or else he was in too much pain to attend class.
We've both had blood tests for Celiac which were negative. I was gluten-free at the time, but he wasn't. I am most definitely gluten intolerant, based on diet. He has had significant GI issues since infancy and this has always been a real problem for him at school. He's always had lactose intolerance symptoms and prior to learning at this forum, I felt he had IBS. After the blood tests done by the clinic at school, they diagnosed him with IBS.
I've not yet convinced him that he should try going gluten free, but he watches the dairy intake and uses Lactaid. If he went gluten-free, he would have very little left to eat as he is a very fussy eater and does not eat red meat. I guess I'll have to take him to my GI doc, and try to pursue better diagnosis, if possible, but based on our testing so far, that does not seem like it will help much in terms of getting anywhere at school. So I guess we've got to find out which foods cause his problems so he work on avoiding them.
Have any kids or parents dealt with this - being undiagnosed and trying to figure it out while in school? How can we deal with this?