jewi0008

Question about coffee for everyone. There are 2 kinds of coffee I usually drink:

1. Plain house, gourmet coffee. Made with 100% coffee beans...and

2. Flavored coffee. This does not mean lattees, ect. It means coffee like, "Caramel coffee," "Kahlua coffee," ect. If you look at the back of those packages, typically, it will say, "coffee beans, artificial flavoring."

It's this "artificial flavoring" that I am concerned about. Does this = gluten? Is it safe or not?

Thanks. I kept a food log for my daughter for over a year, and almost that long for myself. That is how I ended up eliminating so many foods for myself (this happened sequentially after the initial gluten free, shortly thereafter dairy free that started in Jan 05). I am grateful that so many of my symptoms have gone away. It's nice to hear the hope that someday foods can be added in, and that it doesn't have to be the never ending elimination story that is common. I was thrilled in the last week to be able to take probiotics for the first time. Supplements, other than cod liver oil, have always been a huge problem for me (even before celiac). I love your "just live on air" comment....I can relate.

I have a question for everyone about your Food Logs. How do you track everything? Do you write the times you eat the foods/times for symptoms? Or what about ongoing symptoms that don't go away, ect.? Currently, I just write down what I eat and at the end of the day I write what all of my symptoms were. Is there a better way?

For me it seems that anything that is going to hurt/throb/ache/tingle/swell/annoy me in or on my body will happen on my left side. This is true both pre & post gluten-free.

The eye twitching came back...I think I was glutened again!!! uggghhh...

You're reaction sounds like a classic glutening.

I called 1-800-23LATTE and they were very helpful about providing info about gluten. The Latte should be gluten-free if no CC and highly unlikely to have CC issues with such a beverage. For beverages, they said that toppings like java chips and general chocolate flakes have gluten. Did yours have stuff sprinkled on top?

If I were you, I'd check into the popcorn. I don't eat alot but it is my understanding that not all microwave popcorn is gluten-free and if that's the case, then other flavored popcorns are potentially not gluten-free. Plus CC could be a problem at the theater with all the gluten goodies around. There have been some discussions on this board in the past about theater popcorn.

Also, do you know exactly where on here it talks about Movie Theater Popcorn? THANKS!

You're reaction sounds like a classic glutening.

I called 1-800-23LATTE and they were very helpful about providing info about gluten. The Latte should be gluten-free if no CC and highly unlikely to have CC issues with such a beverage. For beverages, they said that toppings like java chips and general chocolate flakes have gluten. Did yours have stuff sprinkled on top?

If I were you, I'd check into the popcorn. I don't eat alot but it is my understanding that not all microwave popcorn is gluten-free and if that's the case, then other flavored popcorns are potentially not gluten-free. Plus CC could be a problem at the theater with all the gluten goodies around. There have been some discussions on this board in the past about theater popcorn.

Thank you so much. I wonder if there is anyway to call that theatre to find out what type of "seasoning" they use on their popcorn because while there was NOT any butter on it...I guarantee it was seasoned with something. I'm feeling major after effects in my mouth for the past few days. It's just KILLING me!!!!

I have been ill for the past month with one thing or another. First SEVERE bronchitis, then SEVERE sinus infection, now I have strep throat. All of which have lasted so long that they have run into each other! My dd started school in August and I am guessing that I am getting these from her (though other than Strep, she hasent been ill). I am so frustrated. I know that I am not healthy. I feel weak and wonder if I have leaky gut. I have loose stools daily (I think I am eating gluten-free). I am considering a liquid diet until I can be sure that I am not ingesting anything I am not supposed to.

Any advise??? I do take a daily vitamin and a chewable B12. I do need to up this I think as I get numbness and tingling in my hands just talking on the phone (plus all night long).

Thank you for responding!

Shannon

I feel for you. I was very, very sick for a whole year before I finally had my tonsils out. During that year I had Tonsillitis and Pharyngitis about 4 times, with colds in between. I also got a bad butterfly rash on the sides of my nose and cracks in the corners of my mouth. Then, after the year was up, I got my Tonsils and Adenoids out. I thought this would make me better, but after having those removed I began to have severe problems with my mouth. This has been going on for 2+ years. There is nothing in my mouth, but my tongue is very irritated constantly. I've been told that all of this is due to celiac. Despite the fact that I don't get sick with tonsillitis anymore, I was still dealing with constant mouth pain and stomach problems. It was brought to my attention that I perhaps I have Celiac. I went gluten free. The stomach problems left me. But now, like you, there is still something in my diet where my mouth problems do not go away.

I'm in this with you. I am trying everything. I currently just gave up Dairy, soy and most sugar as well. I'm going to see if this works. Let me know ifyou find something that works....

Or if anyone else has advice for us!

Those are symptoms I get when I eat soy or casein (dairy) products, because I'm also intolerant to both of those things. Have you ever been tested for either of those?

No, I have never been tested for either of those. The only "testing" I've actually ever had is like a 60 panel scratch test in which I was allergic to nothing. Odd. They then said perhaps I have delayed reactions, in which a scratch test would prove nothing.

Today is Monday. I have been gassy (silent & smelly today). I have also had a little joint pain. Yesterday when I woke up and for the whole day I was extremely fatigued (I slept almost all day!), had a major headache, joint pain and was gassy. I think it was something I ate on Saturday...but not sure what? Here are the questionable things I had on Saturday:

1. Pumpkin Spice Lattee (Starbucks) - Large w/ Soy

2. Wheat and Gluten Free free buns (made with cheese, egg and corn oil)

3. Popcorn at the movie theatre

Any thoughts?!

I definitely react, but (judging by what I've read on the forum) not as violently as many celiacs. I guess my question is, do other celiacs know they react to those situations? I have so many other food intolerances (IgG mediated) with delayed reactions that I am usually not sure what caused me to get sick.

This is my same EXACT problem, frec! I have so many other food intolerances as well and they are typically delayed, so I can never know if it's CC or just another food intolerance! uggghhh...so frustrating!

Hello!

I am really into health/fitness/body building. I am trying to get very, very lean while adding a lot of muscle. I am having a ton of problems with it, though, because of the Protein Factor. I used to always be able to put 100% Whey Protein into everything, but now that I cannot have dairy,cassein, wheat,gluten this is a problem.

Does anyone have any suggestions? Does anyone know of any protein powders I could have? A girl can only eat so much chicken,turkey,fish,ect.

Thanks!

Just a quick question. I have been on the gluten free diet since I was diagnosed about 3 weeks ago. I am doing better but I still have weird stomach things going on.

I have a pain just under my ribs on the left side and it goes around into the back just under the ribs. It is very uncomfortable at times and my ribs seem sensitive to the touch. The night before last, I had some cramps in the stomach are that doubled me over but they didn't last very long at all.

At first, when I started the diet, I was using the bathroom regular with diarrhea some. I seem to be constipated now. Would this pain be attributed to constipation?

Has anyone else had this? Any suggestions?

Yes, I actually posted a topic like this recently with pain on my left side. I had it so bad one day that I came home from work and was curled up on the couch in pain. It moved from my left side to my back and kept getting worse and worse. I thought something was really wrong so I went into the hospital. I had an ultrasound and different exams; nothing. I think it was something to do with the gluten, because I do get it frequently...but just at much less severe pain.

Yours may be from constipation, or else you may still be ingesting gluten and you just don't know it. That's my problem. Any "questionable" foods you at in the day or few days before?

Can anyone help...

If I can't have dairy or cassein that takes away milk, 1/2 & 1/2, creamer, ect.

If I can't have soy, that takes away my unsweetened soy and silk soy that I love.

So, what do I have with my coffee? I've heard I could have rice milk, but then I've heard also that some Rice Milk has gluten in it.

Does anyone know? Are there any brands that I can have? I need something in my coffee!!!

Thanks!

Its frusterating...I know.... I went through all that with the food journals. It was hard for me....I would literally spend hours trying to figure it all out. It took me a couple years but my situation was pretty complicated.

Keep at it...you will eventually figure it out. Since you've been able to narrow it down to these 3 things...the next step would be to try one at a time. Totally avoid the other possibilities for several days...its gotta be one at a time. Eat only the foods which you are know are 100% safe while you're doing this.

Thank you, Rachel! It is very, very, very frustrating. I've spent so many hours with journals, symptoms, comparing, not comparing, ect. I feel like I mostly have delayed reactions, otherwise it might be easier to pin down.

My situation is very complicated as well. I have all of the "normal" systems with gas, alternating d and c, stomach growling, dizziness, ect. BUT for me I have a mouth issue that is almost always with me...like a pain on the sides of my tongue and the sides of the roof of my mouth. It's nothing that's visible to the eye...which is why the doctor's even brought it to my attention that it's probably food related. I have very few days where my tongue will pulse, tingle and pull...and I can talk normally. Those are the days when I know somewhere in the previous days I did everything "right." And then I go back to my journal and spend hours and hours trying to figure it out. And I can't. And it's so frustrating. Been this way for 2 years. I just wish I could find someone on here with the same "side symptom!"

I get the lower left ab pain...sometimes right as well. For me its mainly moldy foods which trigger it.

I've gotten the eye twitches before but its pretty rare....it doesnt happen enough that I've tried to link it to anything.

Is vodka the only alcohol you drink?? Are you ok with any other alcoholic drinks which are gluten-free??

Yeah...I know I MUST be intolerant to other foods as well, I just cannot put my finger on it. I keep a very, very detailed food journal, but there are a few "questionable" foods. I'm not sure what the most common intolerances (combined with the wheat/gluten intolerance) are?

Vodka is typically all I drink. Sometimes margaritas. Sometimes Bloody Marys. I'm ok with whatever, as long as it would be "safe" for me. (Note: I only drink once per week, if at all.)

You just reminded me that I had an eye twitch that went away when I went gluten-free.

What were your other "odd" symptoms? Anything?

I''ve been doing much better since I've gone Wheat and Gluten Free. I mostly stick with meat, fruits, vegetables, almonds, olive oil and tofu. BUT....occassionally I have the following:

- Pumpkin Spice latte (made with soy) from Starbucks

- Corn Tortilla chips

- Potatoes

- Vodka

- Sprite

Do any of these foods carry "red flags" as common "related intolerances?" I had all of them on Saturday. In the couple of days after I was dizzy and "out of it." Yesterday I was very gassy and stinky. My mouth hurts today.

Thanks!!!

Hi

So I have a doctors appointment for next week. I know it is better to wait until you get all your tests done but.... I was originally diagnosed as a toddler and I've been feeling so miserable lately. I've decided to just go ahead and try it.

I did a great job until a little while ago... forgot about the imitation crabmeat in the california rolls!! oh well, live and learn I guess. I bought a bunch of gluten free items from the supermarket. Soy pudding was very tasty!!!

But not sure about some items. Are these things okay????

balsalmic vinegar

chicken (plain)

fresh spinach

fresh carrot

tofu cheese

regular butter

eggs

honey

yogurt

fresh mushrooms

Guess I should buy a book with a good list in it.

If a item says gluten free can I trust that it is truly gluten free???

Thanks for any info

Jackie

Jackie...it is VERY tough...I understand what you are going through. Be very careful with the cheese, butter, eggs. I have problems with those. In addition, yeast MAY bother you, so watch out for the mushrooms. The yogurt, if made with Modified food starch is not a good choice. Go all natural; plain meat,fruits and veggies. It's hard and it is by no means "fun" but you should start to feel better. If I get "glutoned" it takes me forever to recover. Good luck!

If you were diagnosed as a toddler, you really don't need any more testing, you still have celiac disease. In those days they falsely believed you outgrow celiac disease, but they were wrong. Teenagers often stop having symptoms for a few years (while the damage continues) for whatever reason. But you pay later for eating gluten again.

Everything naturally gluten-free is good, like fresh meat, eggs, veggies, fruit. Unless you thicken them with flour (or make gravy with it instead of a gluten-free alternative) you can't go wrong here.

Make sure you don't buy yoghourt that has been thickened with wheat starch. Try all natural.

Everything else you mentioned should be fine, unless you are also intolerant to dairy and soy (and there is a fairly good chance you may be).

Question on something you said...you said: "Teenagers often stop having symptoms for a few years (while the damage continues)...." This is so interesting to me. How did you know that? Or where did you find that out? The reason I ask is b/c I remember having problems up until I was a teenager. Then, when I was in college I got a major rash on my nose and cuts in the corners of my mouth. With meds and topical cream, this went away. Then, when I was 21 I had a tonsillectomy. Ever since, I've had nothing but problems with stomach and mouth. Does this sound right to you?!

Some vodka is grain based. Originally, vodka was potato based, but it's cheaper (here in the US) to make it from grain than potato, and most people can't tell the difference. So, if you need your vodka, find one that is potato based, and you might be ok. You also may have problems with dairy, lots of celiacs do. Is there a specific beverage that contains vodka, sugar, and dairy that seems to bring these symptoms? Or do you always eat ice cream with your vodka?

I used to have eye twitches... and now that you mention it, I haven't noticed any since I went gluten-free... as far as lower left ab pain, mine was never that specific... I'd have pain from my pelvis all the way up to my ribcage...

Hope I helped!

Thank you so much. Dairy and sugar are actually 2 other culprits that I feel might be aided the wheat/gluten intolerance. I do not believe I had any dairy last weekend, but I did have lemonade and hot tomales (candy). The other culprit I wonder about is yeast? It's just so hard for me to go through my journals to pinpoint because I think all of the intolerances are delayed.

Thanks for your thoughs!

PLEASE...if anyone else has any other thoughts post them!

I made a startling discovery last night. I've been looking over the past few months of me recording what I eat/my symptoms. Well, when I went back to symptoms from when I did a detox in last January, I noticed that I had recorded how "weird" it was with my excessive eye twitch...and then after detoxing a bit it went away. The eye twitch + this recurring lower left side ab pain are random symptoms I get (in addition to my mouth problems, alternating c + d, fatigue, aches, ect.).

One thing that always preceeds both of them is vodka, sugar and dairy! I found information stating that the left lower ab pain is and can be derived from wheat/gluten/yeast/grains/lectins/lactose. In addition to this website(Open Original Shared Link) does anyone have anymore information on lectins? What do I need to stay away from?

And is vodka a huge culprit here?

Does anyone else have the eye twitch/lower left side ab pain?

Can anyone relate and offer up suggestions?

Thanks!!!

Thanks for all your replies

I don't think my son is intolerant to anything else - and I'm definitely not questioning his dx (biopsy proven) ....it's just that I'm really suprised it takes him 5 days before he even had a loose stool after a glutening. Most would be rolling up within a few hrs

So, it would seem my son doesn't get much of a stomach reaction but he does seem to be run down after a glutening and always seems to get loads of boils in the most uncomfortable of places <ouch>

He gets boils? I haven't heard of that? Where at does he get them? Is that common? I get run down, too...that's for sure. I'm 24, but I remember when I was growing up...after every family get together I would be the child that was on the couch sleeping...super lethargic. Also, I had cracks in the corners of my mouth and this weird itcy, rash around my nose. Doctors always told my parent's I perhaps had "hand, foot and mouth" disease...but I never had anything on my hands or feet!

Oh jeez, um. First week is excessive crapping, not diarhea, but just the food moving too fast and some cramping and gas. Also first week, worst headache ever, and fevers on and off, and EXTREME stupidity. I actually couldnt remeber the word for punctuation, my mother thought it was hilarious. Then, I discovered in my second most recent glutening, I become lactose intolerant for a week or two, which I really shouldn't complain about, because I can just take the pills, and it does get better. Right around the time that goes away, I get the Dh, although the first time it lasted over two weeks and was REALLY bad, and this time it's hardly bothering me, just a few spots here and there, so thank god for that. I also usually pass out once or twice in the first week, so my boyfriend doesn't let me shower without him.... oh darn. But compared with the agony a lot of other people go through, except for those awful headaches that painkillers don't even touch, I have pretty 'endurable' symptoms. I'm just a freak, apparently, because they last for so bloody long.

Yes, I will get a lot of cramping, gas, DH,but the worst for me is always the reactions I get in my mouth. These are not visible to the eye, but it's like my tongue is constantly scraping against my teeth. My mouth is extremely irritated, annoyed and burns. I will sometimes get canker sores, but not very often. It's the most UNUSUAL symptom...I don't know anyone else who has that?! Anyways, had it for over 2 years and on some random days it disappers...this is how I know my intolerances are delayed. I'm going insane and not sure what to do!!!!

jewi, I sort of do the same thing. I know I've been glutened within two days, but then my reaction lasts for about a month, with the symptoms changing every week or so. Only more than thirty days after glutening do the symptoms fully disappear for me.

JNBunnie1 - What kind of reactions do you get?

One person you could look for is an allergist who will aid you in a true elimination diet. This is where they do allergy skin testing and you also fill out a sheet with your dietary habits. The MD then formulates a beginning diet for you that will be nonallergenic based on the testing and will have complete nutrition. Usually you start with about 5 food items. After a week or two, they will want you asymptomatic, you begin adding in pure single ingredient foods one at a time for about a week between foods. It is a very timeconsuming process and you will not start out with foods you like a lot. But that being said that was how I was diagnosed celiac after blood tests did not show positive.

Another route you could go if your main concerns are casein, eggs, soy or yeast in additon to the gluten is with Enterolab. They can test to see if your forming antibodies.

Thank you for your help. This is definitely something I might do. I went to one allergist who did about 60 scratch tests on me. I was allergic to NOTHING. This is why the allergist originally thought it was a delayed food reaction. I'm not sure how accurate the scratch test is?

My son has been gluten-free for nearly a yr now and I'm still trying to establish what is a normal gluten reaction for him, but it seems it takes him up to 5 DAYS before he reacts!!!! .I must admit he was never terribly symptomatic before his dx.

I know most people here react within hours of ingesting gluten.

Over the last couple of months there have been 2 occasions when my son has definitely without a doubt (not just cc) ingested gluten.

I was all prepared for vomiting/d stomach aches but NOTHING!!!!...then after 5DAYS ( ) all of a sudden he came over pale..had to rush to the loo (ahem...things were NOT normal ) then he had to lay down as he was so sleepy....and that was it basically

This has been the pattern twice now but I just wondered if anyone else took 5 days to react???

Hello!

I was so excited to see your poste. I feel awful for your son, but I think this is my problem, too. I have been having the WORST time trying to figure out what exactly it is (in addition to wheat/gluten) that interferes with my entire system because everything is delayed. I know for a FACT that many times it takes me 5 days+ to react.

I'm wondering if there is anyone out there that could offer up some advice to the both of us as a means of tracking to try to figure out what food are culprits. I keep a very, very detailed food journal, but it doesn't seem to help!

IDEAS?!