angel-jd1

I went to the big fancy GI today. I am not so sure if I am happy with him. My mom thought he was GREAT.....I on the other hand have not decided yet.

He wants to run tests (duh I figured that). He thinks that maybe my celiac diagnosis is wrong....ummm ok then why do I hurl and am sick for weeks when I eat gluten?!?!! Why has the gluten free diet worked great for the last 5 years with no real troubles until now, and why are my symptoms different than the ones I had before when I got my diagnosis.

He thinks maybe it's irritable bowel....to which I said "is irritable bowel even a real diagnosis for anything" Isn't it sort of a catch all for when things can't be figured out(I don't think he liked that question much).

He said that I could very well have celiac or just feel better on a gluten free diet (duh I've felt better for the last 5 years......)

Thinks that maybe I should eat some gluten to see how I feel. Told him that I was about to die before, and not eating gluten has made me have my life back...sooo I'm not going back to eating gluten again. PERIOD! He did say that was fine and would be best to do that if it makes me sick. DUH!!

He wants to wait until I am in severe pain to run a CT scan and more blood work and a scope. YEAH.....soooo you mean I have to get severely sick again until you will test me?? LOL His answer "yeah".

Thinks it may be diverticulitis causing all the trouble.....however without a CT and a scope he won't say for sure (ok this point actually makes sense to me).

He did a physical exam of my stomach (poking around) and I about decked him when he poked around on my right side. He knew I was in a HUGE amount of pain. He kept appologizing. He said the pain can be internal or can be muscle/skeletal pain. He said it's hard to tell without the scopes and ct (this part also makes sense to me).

So the plan is to wait until I am in pain again, schedule a CT and CBC.

So for now....I sit and stew and decide what I think of this doctor and wait for the pain to REALLY kick in to get some answers....*sigh*

-Jessica

I do not eat breakfast cereal, so I am not up on what is gluten free or not. But, I have never heard of TRIX mentioned on this site before. For that reason alone, I feel skeptical. Perhaps, I am wrong. and I truely hope so. Just a gut feeling.

It would be wonderful to have a new breakfast product.

Trix have been mentioned before on several different threads. If you do a search for "trix" they come up. I believe the problem is that they keep going back and forth saying "yes gluten-free, no not gluten-free" to me that is scary!! I don't eat them because who knows what the current status is each week lol

-Jessica

Jessica,

tyvm about the bullfrog.. But, my daughter hates spray stuff. Blue lizard is a little expensive, but did you ck it out? UVA & UVB screening!!!!!! gluten-free

Lynn

www.bluelizard.net

Lynn-

I had never heard of it before you have posted about it on the board (all 200 times ) Do you just LOVE this stuff or do you have steak in the company? LOL

-Jessica

I'm gonna guess it was the bbq. I've never heard of anyone being glutened by smelling flour. Not unless you started licking the bag

I've never heard of anyone getting glutened by the smell of bbq or the smell of flour. It has made me nauseous, but not "glutened". Possibly you have a stomach bug or another food intollerance??

-Jessica

Found this site in a magazine today. I LOVE the format. It is super easy to look up stores/websites. It has some great deals!

Open Original Shared Link

The closer that it gets to Monday, the more nervous I get. I keep trying to talk myself out of being nervous, but so far it isn't working. My Mom is going with me now, so that makes me feel a bit better, but I really hate meeting new doctors. I think I have some phobia of them because of all the trouble I had trying to figure out what was wrong (ended up with my celiac diagnosis). I know many of you can relate with that MD fear lol.

I keep thinking that I should make a list of questions to ask, but I really don't have but one "why do I have this pain".

I need to just stop worrying about it, but that's near impossible!! ha

-Jessica

They aren't listed on the gluten-free list. The reason why is probably that they are fryed in the same oil as other gluteny things. Alot of restaurants throw them into the fryer to warm them up (even if they come pre-made). I would steer clear of them since they are not on the list.

If you are dead set on having them, at least call their customer service line and find out why they aren't on the list.

-Jessica

Duh! You are right - I was talking about a 504 plan. Can you tell I am setting up 529 plans for my kids lately? I have them onthe brain. Thanks for clearing that up for me.

There are too many numbers and acronymns out there!!

-Jessica

Slim Fast has a new drink out that is gluten free and lactose free...they're pretty good!

I agree, these aren't bad. Quick meal in a can! ha

-Jessica

What is the 529 plan at school? The only 529 I know about is a college savings plan? Will this help my kids in school? Sorry to sound so LAME!

Karen

Most likely they are talking about a 504 plan. It is a education plan for kids with disabilities that are not on an IEP (Individualized Education Plan). You can read more about it here:

Open Original Shared Link

-Jessica

I've heard that Banana boat is gluten free too. Not sure about Coppertone. Does anyone know about the Bull Frog brand sunscreen?

Bullfrog is safe. They have a great spray gel stuff...........works like a charm!!

-Jessica

Jessica, you are right. I really was just venting. I had a terrible day and I'm aggravated with myself, and in general, that my nasal spray made me sick. Everything I eat seems to be aggravating my symptoms even more.

The long and short of it is I just want to feel better. I don't understand people who cheat, it's just not worth all of this. I've been recovering for a full week now and it still isn't out of my system. It's just bothering me even more than usual that we have such obstacles in front of us with regard to everything and anything we put on or in our body. I have faith that one of these days everything will be labled so people with Celiac will not have to jump through hoops to function.

In the meantime, thanks for allowing me to vent

It IS frustrating and there is absolutely nothing wrong with a little venting!! Keep up the good work, everything will be fine!!

-Jessica

Moondanse-

I personally feel it isn't the pharmacy's responsibility to call the companies for us and find out the gluten free status. As you have found, it takes time, time that those people don't have. Also, I am not a person who likes to get 2nd hand information. I would rather call the company myself and speak with them myself. That way I am the one hearing exactly what is being said. I can then ask any questions I may have about what they said. I can ask about shared production lines etc.

When I call I usually ask for a pharmacist or chemist at the company. Sometimes you DO get the voicemail, leave a message, but then go ahead and call them again later if they don't return the call.

Most of the companies aren't going to "certify" it is gluten free. That is just asking for someone to sue them. They usually say something like "we don't add any gluten ingredents to ______"

All I can tell you is that you have to keep making those calls. You are doing the right thing by trying to figure out what meds are safe for you!! Hang in there......

-Jessica

I've been making phone calls to the different pharmaceutical companies since I got sick from my nasal spray.

I'm getting frustrated with the difficulty involved in determining if a medication is safe. It really is absolutely absurd that we have to do this. If you call the pharmacy, or mine at least, you are told that unless it's marked gluten-free they can't help you out. Give me a break. There has got to be a better way. I can't go by the lists out there, because they listed my nasal spray (Nasonex) as safe and it was not.

So, I'd like to know what your thoughts are about Allegra, Allegra-D and generic fexofenadine 180? I called Sanofi-Aventis and they said that they cannot certify that it is gluten free due to cross contamination issues. They said that the starch that they use is corn and that it is subject to change. However, the man I spoke with said that he has not known it to change. I use one of the variations of this product every day. So far, I really haven't noticed any problems though.

I'm just paranoid right now. I've been sick for well over a week, so I'm starting to get concerned that something else is causing the problem. It's probably more likely that my system is having a tough time recovering. I used the nasal spray for ten days before I determined that it was the culprit. But, enough is enough. My stomach is so sick and I look like I'm four months pregnant. I hate this. I'm feeling for frustrated, angry, sad, tired, etc, etc, etc.

I tried to find out about Trazadone and Watson Pharma told me that they cannot certify it as gluten-free. Then the guy said there were no starches listed in the ingredient list.

I have a whole medicine cabinet full of things. I had a really tough time trying to even get in contact with the pharmaceutical company for Hyoscyamine, which a lot of us use. The company listed on my bottle is Amide, but they've been acquired by another company. It took me about 45 minutes to even figure that out. Then I got dumped in to a voicemail. ARGH!!!

Who knows. If any of you know anything about any of these drugs, please let me know.

Thank you for letting me vent.

Kelli

Well, I would never recommend unverified restaurant food to anyone. I was simply sharing my own experience. I trust that people can make up their own minds.

Cynicaltomorrow...not sure why you quoted my post about the icecream??? I wasn't saying anything about your posts. I was only saying I called to verify the status of a couple of items since it had been quite a while since I had called the last time.

Still stand by my earlier comment though, that it is risky to eat things like the hot dog, chicken salad etc....huge risk of cc and who knows if they are even safe?!?!

-Jessica

Ohhhhhhhhhhh how in the world could I forget........what is better than a coupon??? Things that are FREE!!!!

Wal-mart.com has free samples all the time. Go to their site then to "in store now" then down to "free samples"

Open Original Shared Link is one of my favorite sites! I have gotten free magazine subscriptions, clothes,c_d's, cleaning supplies etc etc etc from watching the postings on that site. LOVE IT!!

I agree with Jillian, you HAVE to be 100% gluten free. You can NOT be cheating the way that you are or you won't get better.....PERIOD!

Part of the reason you are so emotional is that you are still on gluten. Gluten does some very nasty things to our bodies. Messes with our moods, appetites, health and the list goes on. You will be amazed at how you feel once you stop the cheating and go at this 100%!!

While you are working on the healing process, try to just eat plain foods. That means don't jump right into the processed "meal in a box" type of food. Cook fresh meats and veggies.

Keep a food journal. Write down what you eat, how much of it, and how you feel. Make sure to include your vitamins, meds, personal care items, toothpaste etc. EVERYTHING that passes through your lips or that goes on them (lipstick). That will help you to pin-point any "slip ups" you may have and easily eliminate the food that causes the problem.

There are SOO many things that you can still eat. I know it is terribly overwhelming at the beginning. You are mourning the loss of a lifestyle that you lived for quite a while. The sadness and madness is totally normal!! Work through it, cry if you need to, scream if you need to. It will pass.

Hang in there!! It gets SO much easier. This is a great place for support and information. Keep posting and asking questions.

-Jessica

Thank you so, so much for your suggestions! I have become so depressed with the meal choices that I felt limited to. I eat rice, salads, and fish and chicken everyday, and to be really honest with you....I'm tired of it.

I was diagnosed about 5 months ago, and I guess I just don't try hard enough. I sometimes feel like "Oh well, I'll feel sick and then when it passes, I'll feel better." I know that this is so unhealthy for me, but haven't found the will power to stick to the rules of my health.

Might be hard to believe, but this has been actually harder to overcome, and adjust to than quitting smoking for me. No joke.

My fiance is the most wonderful man. He supports me and urges me to follow the gluten free diet. I know that it must frustrate him that I cheat, but I can't seem to get my mind programed the right way! He took me to Trader Joe's for the first time the day after I was diagnosed. I actually had a breakdown IN THE STORE! The humiliation was unbearable.

I am continually trying to be a better patient, it isn't easy. I have tried gluten free bread.....no good. It fell apart in my hands and then I just got upset and threw the rest of the loaf away. I eat so much rice that I am starting to think that maybe I shouldn't be? I eat Jasmine, Basmatti, and boil in the bag white rice. I love rice, but everyday?

Sorry....I guess I'm just venting now. The tears are creaping up, so I'll sign off.

THank you again for the list of foods that I can add. Your suggestions will be so helpful to me.

www.couponcabin.com

www.momsview.com

www.spoofee.com

I shop online a lot.

I think that couponcabin was where I found the old navy discount for my new swimming suit today hehe!! (free shipping). I know I only saved $5 but hey it $5 is money I can spend elsewhere

-Jessica

well, my gluten free living magazine says as of now they don't see how things absorbed from your skin can get into your digestive tract, and has stopped advertising gluten-free shampoo to stop the confusion, but again, personal choice but this woman should hear both sides of the story. and, you put it in a better way than i did. Lol I hear kristen chenowith say that word on ellen but i wasn't exactly sure what the propper forum word for that was =-D

I laugh and laugh every time they show that clip "and you've got to breathe....from your hoohaa"

I love Alf!

Plus, he burps with such pride and gusto, and since all I have done for the past three months is burp, loudly and often, it seemed fitting.

And I told my job I need to leave. I am sure there are going to be more tears, but I know in the long run it will be good.

Unless you can convince them to turn into a gluten-free bakery , it REALLY is the best decision for your health. Good luck!!

-Jessica

Ok, I do not drink my shampoo either, I do however, wash my hair in the shower. It is very rare when a person can wash their hair and rinse it without getting some water on their lips and even in their mouth. Oops, you could have just glutened yourself! Conditioners always are telling us how good they will make our hair feel and how can they do that? By staying in our hair and if they stay in our hair, then when we brush our hair, or even touch our hair throughout the day, then yup, we have gluten on our hand and can potentially touch something we will eat. Same thing goes for lotions, we put them on our skin, so anytime we touch that skin, it's on our hands and therefore a possible chance of getting to our mouth. It's not about being paranoid, it's about being safe.

I went gluten-free 7 yrs ago. In the beginning, I didn't think about the things I didn't eat. It is true, all celiacs are not alike, there are different levels of the "just how much bothers who" or maybe it's just the fact that some of us do not always know we have been glutened. After 2 yrs of being gluten-free, I then developed a skin intolerance too. If wheat touches my skin now, it's an instant burn, 5 yrs ago, it was hives.

It is a personal choice, yet hardly from being paranoid. It all comes down to how safe you want to feel--I am not taking any chances.

I also do not drink my shampoo. I also do not consider myself "paranoid" because I choose to use gluten safe personal care products. I look at it as "why add another hazard" when I could just use things that are safe and eliminate any question or chance of getting glutened.

I know that I have longer finger nails....lotions and such can easily get under them and hide. If I then go to eat something..hands in mouth....BAM...it's a glutening. Why risk it?

In the shower.......I don't drink the soap or shampoo....however water does get into my mouth occasionally or even the occasional stray soap bubble....BAM....a glutening. Why risk it?

To me, it just isn't worth wondering if my soap or shampoo "got me". I just use gluten free and don't have to worry about that sort of thing.

As far as mucous membranes go............I know that many medications are given where mucous membranes can absorb them. For example, if you for some reason can not take your birth control orally (like you are puking up a storm) you can insert it vaginally and it will be absorbed that way. Obviously the mucous membranes are not directly connected to our small intestines, however until there is further research on the subject saying that there is 100% no risk of any complications(unless someone can provide me with some current research) I think I will stray away from gluten containing things even around my mucous membranes. (ie..no gluten around the hoohaa )Why risk it?

This is my opinion

-Jessica

I was reading this article today about how many brides are going to the discount retailers for their bridal supplies (sam's for cups, plates, food etc.). They were talking about how Sam's club has engagement rings for cheaper. The shocker of the article for me was that target has a bridal line!! I looked on their webside and sure enough, they DO have a bridal line. Veils, dresses, shoes, bridesmaid attire, etc!! I was impressed with what they had. They even had men's tux's!!

-Jessica

Here is another for Kohl's

Open Original Shared Link

code:new9449

expires:7-15-07

10% off all orders at kohl's.com

I am a bargain shopper. I LOVE coupons!! I love a good sale...etc. I started a thread to help other fellow bargain hunters find a good deal. If you get a coupon code to a store you can post it here for others to use/save money with. This can be clothing stores, food stores, whatever!!

You can also post websites that have good "coupon codes". If you find one that is pretty reliable and up to date feel free to post the link to that site as well.

Here are a couple deals that I have run across in the last few days:

Open Original Shared Link

code: shipplus2u (free shipping @ oldnavy.com if you have 1 plus size item in your shopping bag)

Expires: 7-16-07

Open Original Shared Link

every Wednesday they have "wednesday deals" in their online outlet. Reduced price clearance items. They change each week and are ONLY on sale on wed.

Open Original Shared Link

certain magazine subscriptions give you a $5 instant rebate at the checkout. I got a redbook 1 year subscription for $3 yesterday!! (previously 8, but with 5 off, it was 3 )

Expires: 7-31-07

Hope this helps someone...........

-Jessica

Just out of curiosity: You name piqued my interest. I am a HUGE Alf fan. I have Season 1 and Season 2 on DVD and waiting for more. I loved watching him back in the 80's and now I have my kids hooked on him. He of course was from the planet Melmak. Is that the reason for your name?

Karen

When I saw the name I too immediately thought of Alf......love that guy!!

-Jessica

I did a yahoo search for "dairy free lasagna" and came up with quite a few hits. Here are some of the recipes:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

of course if you see anything gluteney in the recipes, just sub in gluten-free ingredients Enjoy!

-Jessica