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Hi. I was diagnosed by entero labs as having a dqb1 501 and dqb1 601 gene. I have been gluten free for about 9 weeks. I also just managed to get an endoscopy for next Monday at a celiac center. My question is will my endoscopy come back negative??

I told the receptionist that I have been gluten free for 9 weeks. She put me on hold to ask the doctor if I need to go gluten free. He said yes. At a later point in the conversation after scheduling the endoscopy, she said "Ok- so you have been gluten free for 2 weeks." I corrected her and still asked if it was ok to have the endoscopy done for accurate results and she said yes but to start eating gluten. (I really don't want to.) When I asked how long I need to be eating gluten and how long it takes to get a negative endoscopy post not eating gluten I never really got an answer. I was put on hold so many times throughout the conversation (busy office) and I am not sure she understood everything.

I don't know what to do. As of now I am scheduled for the endoscopy for next Monday. Any help or advice would be appreciated.

Also, I was not asking for the endoscopy, but initially asked the receptionist if the doctor is going to want me to have an endoscopy done and if I would have to go gluten free for awhile. (I could not get an appointment until January.) I told her about entero labs but she did not know what I was talking about and kind of dismissed it. Sorry for the long drawn out post and I hope it makes sense...

Thanks for your reply. I understand what you are saying. It is just that I do not know when I am getting glutened. I do not have severe symptoms and am still learning about other food allergens I may have. In other words I am newly diagnosed and do not know my body that well yet.

I also hate to admit this, but I was a punky kid growing up. I never knew one could be so sick and how much a food allergen could affect someone just if it even touches the food. I used to work in a fast food restaurant and when we got strange requests such as the ones I make now, we would never take them seriously and the more crazy the order would get such as foods not allowed to touch one another the less we would be compliant--but the customer would ever know that. I know how easily things get cross contaminated. I guess it has all come back to bite me in the butt. :(

Anyway, I would expect nothing more from a college kid working in a pizza joint. I hate to go onto a restaurant and ask crazy questions about soy and gluten. I will usually contact the restaurant ahead of time via email before going and then when I do go to the restaurant it is amazing at how different the responses are. For example, an email has told me to avoid all salad dressings due to soy, but when I asked the waitress about it she says "None of our foods or dressings have soy in it except for the chicken" in a very convincing way. Well, which is it? I just don't trust anyone.

You can try adding potatoes (sweet or regular) if tolerated to your breakfast. If time is an issue, certain frozen brands are gluten free and can be made by just popping in the oven or toaster.

For other snacks, I have been on to blue diamond nut thins (found at whole foods), but they are not very filling and they are still made with rice....does have a different taste though. I know you are looking for carbs, but you can also try making a protein shake when the hunger gets real bad and you just can't wait. Another snack idea is corn tortilla chips with healthy homemade salsa or guacamole. Hope this helps. I am still very new to this too.

There is this new pizza place that will be opening up in town that will supposedly be selling gluten free pizza. I don't think I can trust it. I have no idea how the pizza is prepared in a pizza place--whether the dough is made there or shipped in and whether or not they will have 2 different ovens for gluten and non-gluten.

Even if they do have these precautions in place, I just feel like some lazy college kid is going to, for example, get frustrated waiting for the other oven packed with pizza and just stick the glutened pizza in the non-gluten oven or something of that nature to get his job done quicker. I am just curious what your thoughts are on that. Do you trust these kinds of places?? Would you eat there?? Wouldn't there be a really high risk of cross contamination unless the entire place was gluten free?

I just feel like no matter how much you explain to someone a little gluten is hurting, they just don't get it and I don't feel like they want to get it. It is not there problem, so who cares. We need a national commercial on television to raise awareness to people. Why doesn't someone/group of people do that??? Anyway, sorry for ranting...

Thanks for all your replies. I guess you really can't trust anyone...so depressing...

elonwy: thanks for the heads up on godiva--very good to know

Ohsotired: what is a mild case of celiac?

I have been using Nutribiotic vegan vanilla rice protein. See below.

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I also use hemp protein, but it is not as tasty.

I was not sure where to post this, but I contacted cheesecake factory because that is the food I will probably most miss and even though sugar is out of question for the moment with me, I would like to one day eat a cheesecake again....

Here is there response:

Thank you for your email!

Our Godiva Chocolate Cheesecake is gluten free. However, the pan that is baked in is sprayed with a pan release that contains a trace amount of flour.

Enjoy!

There Godiva cheesecake is so yummy! I have had it so many times before being diagnosed. What about cutting off the bottom and sides??

Thanks so much Gfpaperdoll. I actually went to Barnes and Noble this morning and purchased "Dangerous Grains" and started to read some of it- good book. "Good Calories Bad Calories" sounds like a very interesting book. I will definitely have to get that one and check out the others.

Wow- I guess you are avoiding all grains such as corn and rice? This is all so frustrating, but it is comforting to know you have had successful results by eliminating your allergens. I am planning to get a food allergy test soon as believe I probably have many others too.

Thanks GFPapeerdoll! I can see I have a lot of learning and research to do. This is all starting to make sense with everything I have been going through my entire life. I have never been coordinated (can't dance for anything- like Elaine on Seinfeld) and have little proprioception and believe it is probably related. I thought I was just spastic. Anyway, I came across another one of your posts recommending the book "celiac disease: a hidden epidemic" and I just purchased it. If anyone else has any good books I would love to hear about them.

Hi. I am looking for a mayonnaise that has no soy, vinegar (except for apple cider vinegar), gluten and all sugar (except stevia) including things like agave nectar, evaporated cane juice, etc. Anyone no of anything like that? I am a little freakish about making mayo. myself bc it would consist of raw eggs. If not does anyone know of a different way to make tuna and chicken salad? Thank so much.

I ate a Glutino cheese duo pizza a few weeks ago for the first time and had severe flushing. My face felt very warm. When I looked in the mirror my skin was red and blotchy all over my face, arms and torso. Has anyone else experienced a reaction like this?? I am pretty sure it was from the Glutino pizza because I keep a diary of all my foods and that was the only new thing I had. I could not figure what it was from the ingredients on the box. I also contacted Glutino to see if anyone reported these symptoms and was told no.

Thanks Darlindeb! I don't know what you are eating. Corn, soy, rice & gluten are in everything!

I have been reading a lot on this forum the past few days and it is so depressing. It seems people start out finding they have a gluten intolerance/celiac and then they find out they have so many more allergies... It is such a process to find out all this stuff. I guess it is best to rotates foods to try and prevent allergies from happening. I purchased a book on rotating foods, but am still waiting for it to come in the mail.

LOL!!!! I have been looking for a protein bar that meets this criteria for the longest time. They don't exist!!!!

The only packaged food that comes close to those requirements that I know of are Terra chips original. They are actually quite tasty too. There is however some sugar in it, but this comes from the actual food. Is not added. The body does need some sugar and if there is not enough sugar, the body will make it. I gave up looking for the zero under sugar and just accepted that sometimes I will have to eat it, but I do make sure it is minimal. I am no longer eating ice cream and cheesecake everyday so I have cut out a lot of stuff and that is good enough for me... for now until I find a better way.

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darlindeb,

I was wondering if you could tell me what kind of symptoms you have had with the soy? For some reason I have always avoided soy milk- not sure why- just did not like the way it made me feel I guess. As for the processed foods I would eat them all the time and I am not sure I ever noticed anything, but I was not exactly looking for something either. I have also had anesthesia with propoful drips which contains soybean oil and was fine during the procedure. I guess I am just wondering if this kind of allergy can get more severe in time? I have read things about anaphylaxis shock but I think that is also very rare with soy.

Thanks.

PS-- Does anyone know if you get the gluten levels under control and most of the damage that has been done to your body as well as avoid soy and whatever other allergies for awhile, will the body eventually accept soy again? I know gluten is a definite no no,but what about the allergens. Is it possible that maybe people with gluten intolerance are too busy trying to get rid of the gluten that they can no longer digest soy, milk, etc.?

Thanks Darlindeb and Shay!! That was very helpful. Shay- I am actually treating myself for candida too. I have been sugar free for a month now and I have been taking lots of probiotics, antifungals, etc. It is so frustrating that I can not have the foods I was eating before. I was eating out all the time-- no more outback blooming onion.

Wilem,

changing your diet is not easy, but as you know any little amount of gluten can hurt you if you have celiac/gluten intolerance. i know what you mean about the whole going out to dinner thing. before i decided to go gluten free, i was eating everything and going out everywhere to eat 5 or 6 days a week.

what has helped me stay on it was avoiding going out to eat as much and trying to limit the places i go to to to gluten friendly only. luckily i have been able to find 2 restaurants. one is a privately owned restaurant. the other is bonefish grill. if there are any by you, check them out. the food is good.

as for the bread thing, i know it is not easy. what helps me is to eat something light beforehand. that way i won't be salavating for the evil bread and can focus on my drink or the conversation. it really does help. i also try to keep snacks with me all the time and try and eat a lot throughout the day so that i never feel starved. starving will make you want to cheat. some snacks i keep with me are vegetables such as carrots or rice crackers. i also keep a beverage with me at all times. sometimes i think i am hungry when i am really just thirsty. you can also make things ahead of time such as breads, muffins, whatever and freeze them.

lastly, i focus on the foods i can have rather than on the foods i can not have. when i am in the supermarket i do not even look at the foods i can't have. it takes a lot of commitment and time. i also found that once i was able to completely cut out the gluten the cravings for it started to go away. i now look at gluten like it is poison.

do not beat yourself up if at first you are having trouble. this is normal. it may take several months before you are able to completely cut it out. the important thing is you are on the right path. i hope this has helped.

Fecal Antigliadin IgA 34 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow