When will I learn??

JanLeb

This weekend I did a dumb thing! I glutened myself.

I guess I am having a hard time believing that I am gluten intolerant, since the celiac test came back negative. So Saturday night I really wanted a burger and I thought I could handle it. OH SO WRONG!! With in a few hours I had awful stomach pains, had a headache, was so bloated it hurt and just felt exhausted!

I am still not feeling the best today, but I also have not slept well the past couple of nights, I am not sure if that is related or not. I guess I will look at is as an experiment and I was the unlucky 'guinea pig". I guess any doubts I had should be gone, I just can not go near that stuff anymore

peachNpunkin

Oh, I am sorry you had to learn that the hard way. I too have done the same thing. And it wasn't a positive experience. Udi's sells very good hamburger buns. They are quite tastey. I really enjoy them. So there is no reason for you to not be able to have a hamburger when you are having a day.

As strange as it sounds crazy, but I have been known to go to a restaurant, order a burger without the bun, and pull my Udi's bun out of my purse and put my burger on it. Sad I know, but I have done it.

SyntonicGarden

My test came back negative too, but I think that's because I've long suspected being sensitive and cut out the wheat on my own. It's possible to just be sensitive and not test positive for it.

If you're dining out and still want the burger, a lot of places are starting to offer wrapping it lettuce instead of a bun. Sometimes you have to ask, if it's not listed on the menu. Granted, it's not quite the same, but it allows you to still enjoy the burger without having to use a fork. And you may decide that you actually prefer burgers this way. : )

pdworkman

Unfortunately, a negative celiac test doesn't mean you don't have celiac disease. A positive is positive, but negative is inconclusive.

JanLeb

It is very frustrating for sure!

I think I have learned my lesson. I am finally starting to feel better again and I just have to remind myself that I don't want to be sick every time I have a craving for something I know I can't have.

It is just hard when you don't get a real diagnosis....my Dr. said "Well the test was negative, maybe you are gluten intolerant...if you feel better don't eat it" UGH! What kind of medical answer is that??

Anyway I have had 2 full days, since my "experiment" of being completely gluten free, and I can feel the difference again. So I guess that will have to be my diagnosis.

It is a lifestyle I have to accept moving forward, it isn't a choice it is a necessity!!

peachNpunkin

My markers were elevated, but my biopsy was negative. I just tell people I have Celiacs. It is so much easier than explaining Non-Celiacs Disease Gluten Intolerance. It's just easier for me than explaining it all.

JanLeb

I have found people look at me funny if I say non-celiac gluten intolerance - so now I just say I have a gluten-intolerance and they usually say "oh you are celiac" I have tried explaning a few times - but maybe it will be easier to just say yes :ohwell:

pdworkman

Some of the doctors are now speculating that non-celiac-gluten-intolerance is just another variant of celiac disease.

Of course, initially, celiac disease just meant that you had gluten intolerance with flattened villi in your intestine. If you didn't have flattened villi, it didn't matter what the mechanism of intolerance was or how many of your other systems were being affected, or how severe the intolerance was. Just whether or not you had flattened villi. And it turns out that often times when they are doing biopsies, they don't check the right place or do enough samplings to find flattened villi.

The definition of celiac disease is expanding, and I think it is fine to say "yes, I have celiac disease" when people are trying to understand your limitations.

My markers were elevated, but my biopsy was negative. I just tell people I have Celiacs. It is so much easier than explaining Non-Celiacs Disease Gluten Intolerance. It's just easier for me than explaining it all.

caroleslaststand

don't feel bad. I think we all had enough denial at first to test fate and eat some wheat. You probably have to try it to convince yourself that "yep. that's it. I really can't do that anymore." It will get much easier with time and when you find that brand or recipe for gluten free bread that hits the spot, you may not have fond memories of wheat bread anymore. I don't. The recipe for "White Sandwich Bread" in Elizabeth Barbone's cookbook, Easy Gluten Free Baking is soooo good (and it is almost half brown rice flour as well), it is exactly what I crave when I think of bread. I think I'm about to go bake a couple of loaves. yummm

solarpower4

My test came back negative too, but I think that's because I've long suspected being sensitive and cut out the wheat on my own. It's possible to just be sensitive and not test positive for it.

If you're dining out and still want the burger, a lot of places are starting to offer wrapping it lettuce instead of a bun. Sometimes you have to ask, if it's not listed on the menu. Granted, it's not quite the same, but it allows you to still enjoy the burger without having to use a fork. And you may decide that you actually prefer burgers this way. : )

It didn't take long for me to realize I really and truly PREFER LETTUCE wraps to bread or buns! I do still have peanut butter on bread sometimes, but even so I prefer peanut butter on bok choy or kale or celery. It's much more refreshing not to mention healthier. It may not sound so appealing right now, but you may find you like it after a very short while.

Sorry about your bad experience. Yep, trust yourself - you know your body better than anyone else (even all the doctors out there).

coronalime

Actually you should go back to the resturant and re create the meal..Just ask for either no bun or if they can wrap it in lettuce..You may have a slew of other things..Like fat intolerance, gallbladder issues or who know what.

If I eat out sometimes..Like Outback..and I over eat..I am in the bathroom. If I use to much coconut oil in a recipe or eat alot of things with that oil I am in the bathroom..Prior to my celiac diagnosis (which was like 10 yr ago) they diagnosed me with IBS and then fat intolerance. I think they all go hand in hand.

Your digestive system is not a well oiled machine. Some people have better ones then others. Women tend to have the worse. Gluten intolerance is common in most people along with dairy issues. However you may find that you can eat certain types of grains. You may find that if you mix them right certain grains are easier to digest at certain times. I hate when people get rid of a food item but really dont need to.

Some people feel better eating GF or DF or going Paleo but its not always bc you cant tolerate the food. Its bc on those diets you "tend" to eat better..Its not so easy to hit McDonalds or order a pizza anymore.

angng

I always wonder if some restaurants that don't have GF buns will get mad if I bring my own Udi's bun with me.

I did the same thing today. Auntie Anne's soft pretzels do it to me every time. I had to RUN to the bathroom.

er1nya

Don't be so hard on yourself. I had a pretty bad weekend myself. IMy test for Celiac also came back negative but through eliminating gluten myself then reintroducing it is very clear that I have an intolenance. I am also somewhat in denial as this all happened only a few months ago.

As an Irish gal, St Patty's day is my favorite! It took a lot of willpower not to eat Irish Soda Bread! I found comfort in knowing I could eat my father's Shepard's pie, which is my favorite! I noticed my dad used gravy which has gluten in it, but didn't have the heart to tell him since he was proud that he was making something I could eat. I decided to eat it anyway and boy did I pay for it. This was last weekend. I was sick for three days after ,including that night. It was horrible. I was really mad at myself.

This weekend I went to a bachlerette party at a Winery where they had NOTHING for me to eat. My choices were a plate of steamed rice or lettuce with grilled chicken on the side. BLEH! It kind of put a dark cloud over my weekend because I love to eat and try new foods and this has been really hard for me.

I will join your pity party

BeesKnees181

I glutened myself too. I feel terrible. My stomach is in knots and I feel bloated, sick, and gassy. Here's to staying gluten free today!

JanLeb

I want to thank you all for the support and sharing how you are all dealing with this as well. My husband is very supportive, but sometimes I feel guilty because we used to love to eat out, and now we just cannot eat at some of our old favorite places. Also my mother gets a bit 'annoyed' with me when we are out and she wants to stop for a bite to eat and I say "I can't have anything there, but you can have a snack and I will just have a tea or something" She tells me to never mind and I am just no fun anymore :grumble:

It really makes me feel less 'alone' in this battle. I am finally feeling better today and I plan on staying away from the gluten - it really is not worth the way it makes me feel. I have only been at this a couple months, and know I still have lots to learn....but I will try my best not to gluten myself again...at least not on purpose.

angng

It sucks that your family wouldn't be supportive in you improving your HEALTH!

I'm mainly on here tracking my food again to hold myself accountable. . .I've been cheating a lot and I KNOW it's why I feel awful. I've been tracking my symptoms in my food notes.

LoriLynn51

I had the very same experience last night with pizza! I even posted using the topic of being a "slow learner"!
My labs were "positive" for celiac, while my biopsy was "normal". Like you, I guess I had a hard time believing
I had celiac. I had decided on my own that it wouldn't hurt to at least try a gluten-free diet and see how I
felt. (My entire life, since birth, I have vomitted and or been nauseated every single day! I even vomitted as
soon as I was born and vomitted daily until my early teens! I had daily nausea that had gotten so bad (before
going gluten-free) that it woke me up at night! Once, I started the gluten-free diet, no more nausea! I couldn't
believe it! Well, last night, I totally made myself sick eating pizza! I was tired, over-worked yesturday (a 12 hour
shift) and I just wanted something quick and easy! BIG mistake. Tonight, my hubby ate the left-over pizza and
yours truly had her safe, gluten-free dinner and I feel just fine! I feel for you! I hope you feel better very soon!

gramanana

I'm new to this, too, and am slowly getting a handle on it. But I had the same idea of bringing my own bread to the restaurant. I'm glad someone else is doing the same thing--I won't feel so weird knowing others are doing this, too. Udi's makes a great white sandwich bread, too. Trader Joe's makes a great "rye-less" rye bread so that saves a bread lover like me.

gramanana

I'm new to this, too, and am slowly getting a handle on it. But I had the same idea of bringing my own bread to the restaurant. I'm glad someone else is doing the same thing--I won't feel so weird knowing others are doing this, too. Udi's makes a great white sandwich bread, too. Trader Joe's makes a great "rye-less" rye bread so that saves a bread lover like me.

The tip about asking for your burger to be wrapped in lettuce is a good one. I used to get sandwiches from Jimmy John 's that way--how could I forget. Great reminder.

gramanana

In my recent research I've found that some restaurants do have some GF items on hand. Maggiano's actually had some GF pasta and the chef came to the table before cooking my meal to make sure I had no other allergies. So start asking at your favorite restaurant.

tina990

I too have difficulty staying away from the gluten - even though I know better. I am so tired today and it's most likely from having a sandwich yesterday. I think I'll use that idea of taking my own bread to the restaurant. I've never been tested, I just say that I'm allergic to wheat.

mamabear272

I did it too! Yesterday I did a Kidney Foundation walk. They had Subway, chips, water and apples. I had an apple, chips and water but I was hungry! So I grabbed a sub, took the bread off and ate it. I feel like garbage this morning! :frown: I know I shouldn't have done it but that's all they had with any substance!

I had actually thought about going to Long John Silvers and getting a piece of fish and taking a GlutenEase. No way I'll even try that now! :sick: It's so not worth it!!

ALH1981

i did it this weekend and felt like i was hungover all day, my stomach was ripped to shreds and i feel like i've been hit by a bus today... why dont i learn???

pdworkman

Awww, guys. Come on. Take care of yourselves. Plan ahead - don't count on anyone else to have enough food for you. Take emergency food or have a fall-back plan. I don't want you to be sick!

JanLeb

I think I did it again yesterday as well...but not on purpose this time. I didn't have anything that has gluten in it I don't think. I made myself a veggie omlette for breakfast with udi's bread for my toast, I also had 2 pieces of bacon and had HP sauce to dip it in. (I know that sounds strange but I love it) Hubby and I went out and stopped at Tim Hortons, but I just had a tea. Then for supper we BBQ-ed - Chicken breast, grilled veggies and coleslaw.

We were planning on going for a walk after supper, but within an hour I was doubled over in pain and running to the washroom every 10-15 minutes. So I figured I better stay very close to home.

I guess I am still having a hard time figuring out what I can and can not have.

ALH1981

Its so hard, sometimes i get so mad that i have to think about this all the time, so i get defiant... but it always comes back to me... Woudl love to feel normal today!

Does gluteneze actuallyhelp?

mamabear272

I think I did it again yesterday as well...but not on purpose this time. I didn't have anything that has gluten in it I don't think. I made myself a veggie omlette for breakfast with udi's bread for my toast, I also had 2 pieces of bacon and had HP sauce to dip it in. (I know that sounds strange but I love it) Hubby and I went out and stopped at Tim Hortons, but I just had a tea. Then for supper we BBQ-ed - Chicken breast, grilled veggies and coleslaw.

We were planning on going for a walk after supper, but within an hour I was doubled over in pain and running to the washroom every 10-15 minutes. So I figured I better stay very close to home.

I guess I am still having a hard time figuring out what I can and can not have.

You have to really watch BBQ sauce. I have discovered that smoke flavorings usually have gluten in them. Unless it was specified gluten free it may have been your culprit. Most companies are getting MUCH better about labeling but some are not very good.

mamabear272

Its so hard, sometimes i get so mad that i have to think about this all the time, so i get defiant... but it always comes back to me... Woudl love to feel normal today!

Does gluteneze actuallyhelp?

I certainly wouldn't use it as a license to go loading up on gluten but if you get a little accidentally, it helps!

JanLeb

I think I did it again yesterday as well...but not on purpose this time. I didn't have anything that has gluten in it I don't think. I made myself a veggie omlette for breakfast with udi's bread for my toast, I also had 2 pieces of bacon and had HP sauce to dip it in. (I know that sounds strange but I love it) Hubby and I went out and stopped at Tim Hortons, but I just had a tea. Then for supper we BBQ-ed - Chicken breast, grilled veggies and coleslaw.

We were planning on going for a walk after supper, but within an hour I was doubled over in pain and running to the washroom every 10-15 minutes. So I figured I better stay very close to home.

I guess I am still having a hard time figuring out what I can and can not have.

You have to really watch BBQ sauce. I have discovered that smoke flavorings usually have gluten in them. Unless it was specified gluten free it may have been your culprit. Most companies are getting MUCH better about labeling but some are not very good.

We used Bull's Eye Original BBQ sauce for the chicken - I was told that is GF, so I figured I should be safe. I was also told HP steak sauce is GF - but then someone else told me it is not.....this really is confusing and hard to get used to.

SilentRenegade

I did the same thing a few weeks ago in which I thought "hey this sandwich won't hurt me!" No I was wrong, and was miserable for about 5 days.

Then this past weekend we went to the diner. I thought, oh, this should be okay... some chicken with spinach, feta, and rice. The gravy had flour in it.

Yesterday, I thought "Oh I'll have some granola with this yogurt, granola is oats, it's legit."

Nope.

Within about 10 minutes of eating them I feel like I have a head cold and then it hits my stomach. Luckily those incidents were not nearly as bad as the full sandwich incident. I still feel achy today, but I made SURE to cook plenty of gluten free goodies that I can eat throughout the week. No more diners.

I find it very hard when I see a food I once enjoyed or a restaurant I want to try and realize that I shouldn't because I could get sick.

I also came up negative for the test but had a Vitamin D deficiency (though I was taking 5,000mg a day), so they advised me to stay away from gluten foods. It is easier just to say you can't have gluten and if they ask, then just say you're celiac. I don't feel like explaining it to every person that walks up to me.