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A-Swiss

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A-Swiss Rookie
A-Swiss
Posted

Well, I just got "diagnosed" just a few days ago (The biopsy said yes, the blood work didn't). The doctor feels that my reactions after eating gluten free for a week verify that I have it. I went from an entire month of pain and bloating to relative relaxation, energy and clear-headedness (is that a word?). Here's what I want to know (and I know this is probably posted all over, but this is a big change for me) -

* I am 30 years old and had never realized that this was an issue. Looking back at my physical state, it makes perfect sense, but I never knew. I was diagnosed after having rapid onset of severe stomach pain. Is such a rapid change like this normal?

* I am bull-headed and will stick to the diet, but how long did it take most of you to start feeling "normal" again after you started (assuming that you had more obvious symptoms)?

* I found Soy sauce was a sneaky thing to have gluten, but what other really non-obvious items should I look to avoid?

Sorry for all the lame questions, this is all just new to me. Kinda sucks.

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MELINE Enthusiast
MELINE
Posted
Well, I just got "diagnosed" just a few days ago (The biopsy said yes, the blood work didn't). The doctor feels that my reactions after eating gluten free for a week verify that I have it. I went from an entire month of pain and bloating to relative relaxation, energy and clear-headedness (is that a word?). Here's what I want to know (and I know this is probably posted all over, but this is a big change for me) -

* I am 30 years old and had never realized that this was an issue. Looking back at my physical state, it makes perfect sense, but I never knew. I was diagnosed after having rapid onset of severe stomach pain. Is such a rapid change like this normal?

* I am bull-headed and will stick to the diet, but how long did it take most of you to start feeling "normal" again after you started (assuming that you had more obvious symptoms)?

* I found Soy sauce was a sneaky thing to have gluten, but what other really non-obvious items should I look to avoid?

Sorry for all the lame questions, this is all just new to me. Kinda sucks.

hello

welcome to the forum

well it usually takes a few weeks until you feel better and then it can take up to couple of years until you are completely healed (but of course it depends. you may be completely healed in a few months)

it took me exactly 3 weeks to start feeling great again.

gluten can be hiding in nuts, spices, these little cubes we use in cooking (I don't know the word for that), toothpaste, mouthwash, some rice brands, honey that is not of good quality, vinegar (baslamico), caramel colour, malt....I can't think of anything else right now....you should always check the ingredients. I will send you in pm a list of all the ingredients that you should avoid, ok?

kisses

meline

A-Swiss Rookie
A-Swiss
Posted
  • Author

Wel,, thank you soooo much. Every little bit helps. How'd you know you had it?

happygirl Collaborator
happygirl
Posted

Here's some lists that will help you learn to read labels.

Gluten free eating can be summed up by this:

1. Know what the ingredients are in every item that goes into your mouth.

2. Know how it was prepared (when eating out, at a friends house, etc) in regards to cross-contact with gluten containing foods.

If you don't know the ingredients, or are uncomfortable with how it was prepared-don't risk it. Don't eat it.

Unsafe and safe ingredients: https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

Lists of companies that have a clear gluten labeling policy (if you don't see wheat, rye, barley, barley malt, or oats, its not in there) : Open Original Shared Link

home-based-mom Contributor
home-based-mom
Posted

Let me just add that you will need to be doing a *lot* of reading for awhile. Reading labels and reading posts in this forum. This place is wonderful - don't hesitate to ask anything. Someone will know the answer and will be happy to help you.

Welcome! :)

MELINE Enthusiast
MELINE
Posted
Wel,, thank you soooo much. Every little bit helps. How'd you know you had it?

I am glad I helped you.

Well I was extremely tired, having headaches, bloating,night terrors, ekzema on my face and permanent nausea so I went to a dermatologist for the ekzema and she told me to have some tests for food intolerance and they found out I had gluten intolerance plus 40 more other intolerances. When I stopped glutening myself within 3 weeks I felt like I was born again....Biopsy came back negative cause I had it after 7 months of gluten-free diet so....it is absolutely normal...That is my story.....

feel free to ask anything you want

meline

A-Swiss Rookie
A-Swiss
Posted
  • Author

Yeah, I figured I would do a lot of reading. Not too often someone comes up and says "Hey, guess what, I have something to change your life! Have fun!"

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ksymonds84 Enthusiast
ksymonds84
Posted
Yeah, I figured I would do a lot of reading. Not too often someone comes up and says "Hey, guess what, I have something to change your life! Have fun!"

Just wanted to say welcome! Reading this board every morning with my coffee has been a godsend and helps me keep positive for the day because I know I'm not alone. Hang out with us and ask away, we've all been there!

A-Swiss Rookie
A-Swiss
Posted
  • Author

Thanks, all of you. I even went as far as listening to NPR yesterday, as they had a whole hour on celiac stuff. I am going to make a really nerdy comment and say that I at least feel like I am not on the middle of an island for the first time in 2 weeks.

So now I have a tough question - Would a Mexican restaurant serve a gluten free cheese enchilada? I am a huge mexican fan and I want to hang on to one shred of normalcy. The knowledge/language barrier prevents me from asking the staff directly (I can speak the language, but "gluten free" might as well be arabic to most people). Experience?

cyberprof Enthusiast
cyberprof
Posted
Thanks, all of you. I even went as far as listening to NPR yesterday, as they had a whole hour on celiac stuff. I am going to make a really nerdy comment and say that I at least feel like I am not on the middle of an island for the first time in 2 weeks.

So now I have a tough question - Would a Mexican restaurant serve a gluten free cheese enchilada? I am a huge mexican fan and I want to hang on to one shred of normalcy. The knowledge/language barrier prevents me from asking the staff directly (I can speak the language, but "gluten free" might as well be arabic to most people). Experience?

It's usually the enchilada sauce that gets you. I usually have a shell-less tostada or taco salad. No chips, cause they are usually fried in the same oil as the wheat-tortilla burritos/chalupas.

Try this site for free language cards. Read the english one to see what it says. Open Original Shared Link

~Laura

babysteps Contributor
babysteps
Posted
NPR yesterday had a whole hour on celiac stuff.

So now I have a tough question - Would a Mexican restaurant serve a gluten free cheese enchilada?

I'll have to check out the NPR feature!

depending on the restaurant, gluten-free is possible with Mexican food.

dining card idea in espanol is a great idea. If you have a 'regular' restaurant you usually go to, it will be worth an initial conversation (could take a few minutes) to figure out how & what you can eat there. Beware that most corn tortillas are a mix of corn & wheat flour, but 100% corn tortillas DO exist.

You may want to be cautious about dairy the first few weeks gluten-free. I am okay w/dairy now, but first few weeks of healing my gut couldn't quite handle it. Some gluten-free folks are also casein (milk protein) free, seems to be a higher % than in the 'general' population.

Hope you're feeling better already :)

A-Swiss Rookie
A-Swiss
Posted
  • Author

Wow, you see - this is why this is helpful!

I have the exact same reaction to milk! I thought I was just being mental (I drank/drink) a lot of milk and I have really cut back because I feel like I am swallowing lead weights. I thought I was just being mental.

Lord, if you have a little bit of compassion in you - please let me keep milk! I gave up brownies - you owe me ice cream!

MELINE Enthusiast
MELINE
Posted
Wow, you see - this is why this is helpful!

I have the exact same reaction to milk! I thought I was just being mental (I drank/drink) a lot of milk and I have really cut back because I feel like I am swallowing lead weights. I thought I was just being mental.

Lord, if you have a little bit of compassion in you - please let me keep milk! I gave up brownies - you owe me ice cream!

I don't know if this post is an answer to my previous one or to someone else.....anyway you have to check other food issues cause it is very common for celiacs to be lactose/casein intollerants but this is not permanent. It usually is a side effect of celiac, and when you go gluten-free it is very possible that you can put back milk in your diet.

You are so lucky....I cannot eat sugar, lactose, chocolate.....so stooooooooooooooooooooop talking about ice creams.......................................................LOL!!! Haahahahahahhaha!!!!!!

ellen123 Apprentice
ellen123
Posted

While everyone's advice has been great, I feel like Happygirl really summed it up: if you have any doubt, just don't eat it. If you haven't read enough yet on any given day to know that what you're eating is safe, and that it's been prepared safely, just say no. I have learned this the hard way, and I have to keep reminding myself every day. Yesterday, for example, I was visiting my dad in the hospital. There was a cafeteria full of many many choices -- salad bar, grill food, "healthy" vegetarian dishes, meat/potatoes/vegetable, so many things, and I started thinking "There's got to be something here that's safe." But in the end, as I walked around and looked at each thing, I realized I had no idea what was in each dish, how it was made, what spoon may have been first used to spoon out gravy before it was used to spoon out chili. Even the salad bar wasn't 100% reliable. So I just ate a banana and a bag of potato chips (after reading the label), and didn't have the energy to get into another discussion with my table-mates about why I wasn't eating something "better" so I just shrugged and said I wasn't very hungry. I was actually fine with what I was eating because I didn't want to get sick and I figured eventually I'd get home and eat what I wanted.

So my advice to you, in addition to everyone else's great words of wisdom, is to not get too wrapped up in worrying about these situations. If you know you're going somewhere where the food situation might not be easy (including a restaurant with family or friends), just eat before you go, and have something really light once you get there. If you're going to a better restaurant, or even your regular favorite restaurant, the chef and wait staff will usually try harder to understand your needs and accommodate them and you can often eat out safely. But if you're not sure, eat little and don't worry about it. There will be more food later.

Beware of green tea in Japanese restaurants! Glad to hear you know about soy sauce (and you can buy individuall gluten-free packets, by the way), but I discovered the hard way that green tea is sometimes made with barley.

Four months into eating gluten-free, I find it gets easier every day. I'm cooking more, shopping faster, and still eating out, but just choosing more cautiously. My symptoms were markedly improved within the first week. My relapses (due to accidental gluten consumption) occur less frequently now. Best of luck! Feel better!

frec Contributor
frec
Posted

Here is something that will cheer you up. There are several very good gluten free brownie mixes. They are easy to make and probably the best gluten-free baked good. Even regular grocery stores carry them now--also Trader Joe's and Whole Foods. If you end up dairy free there are some great soy ice creams and adequate rice ice creams--also sorbet is very good. (sorry Meline!)

I have rice, beans, and guacamole at Mexican restaurants--also fajitas without the tortillas.

Good luck!

MELINE Enthusiast
MELINE
Posted
I have rice, beans, and guacamole at Mexican restaurants--also fajitas without the tortillas.

Good luck!

Yes A-Swiss that is a good choise, I have this stuff too at Mexican restaurants and it is safe.

MELINE Enthusiast
MELINE
Posted
If you end up dairy free there are some great soy ice creams and adequate rice ice creams--also sorbet is very good. (sorry Meline!)

You see what you've done? now I have to kill you too.....Ha haahahahahaa..... :lol::lol::lol:

cyberprof Enthusiast
cyberprof
Posted
Here is something that will cheer you up. There are several very good gluten free brownie mixes. They are easy to make and probably the best gluten-free baked good. Even regular grocery stores carry them now--also Trader Joe's and Whole Foods. If you end up dairy free there are some great soy ice creams and adequate rice ice creams--also sorbet is very good. (sorry Meline!)

I have rice, beans, and guacamole at Mexican restaurants--also fajitas without the tortillas.

Good luck!

frec is right. Trader joe's gluten-free brownie mix is wonderful and half the price of Bob's Red Mill or gluten-free pantry mix and it's dairy free too. I mix in 1/2 cup of Gluten-free Casein-free chocolate chips. I even fed it to the soccer team and no one cared or knew.

I too have guacamole, rice and beans at the local Mexican restaurant with no problem.

~Laura

Blessings Explorer
Blessings
Posted

One word "Chipotle"

Everything is gluten-free except the flour tortillia. You can ask the cashier to have the servers change their gloves to prepare yours. I talked to our manager and his mom is very sensative and this is what he has his employees do.

The chips and guacamole are yummy. I love the shredded beef salad.

MMMMMMMMm :P

A-Swiss Rookie
A-Swiss
Posted
  • Author
One word "Chipotle"

Everything is gluten-free except the flour tortillia. You can ask the cashier to have the servers change their gloves to prepare yours. I talked to our manager and his mom is very sensative and this is what he has his employees do.

The chips and guacamole are yummy. I love the shredded beef salad.

MMMMMMMMm :P

I've found that without Chipotle - I would be armed and featured on CNN! The burrito bowls atleast add 1 ounce of normalcy to my life. I also found a local pizza place that has a gluten free crust and I can't tell any difference. My friends like it better than the delivery stuff (Waldo Pizza if any of you want to head to KC).

  • 2 weeks later...
katebuggie28 Apprentice
katebuggie28
Posted
Well, I just got "diagnosed" just a few days ago (The biopsy said yes, the blood work didn't). The doctor feels that my reactions after eating gluten free for a week verify that I have it. I went from an entire month of pain and bloating to relative relaxation, energy and clear-headedness (is that a word?). Here's what I want to know (and I know this is probably posted all over, but this is a big change for me) -

* I am 30 years old and had never realized that this was an issue. Looking back at my physical state, it makes perfect sense, but I never knew. I was diagnosed after having rapid onset of severe stomach pain. Is such a rapid change like this normal?

* I am bull-headed and will stick to the diet, but how long did it take most of you to start feeling "normal" again after you started (assuming that you had more obvious symptoms)?

* I found Soy sauce was a sneaky thing to have gluten, but what other really non-obvious items should I look to avoid?

Sorry for all the lame questions, this is all just new to me. Kinda sucks.

I am in the same boat. I am 30 (31 on 5/28). i never knew I had a problem until I began to get horrible stomach pains. I had a clear day yesterday, and I couldn't believe the difference. Today wasn't such a great day, but tomorrow will be better. I have researched until my head feels like it's going to explode. My family doesn't understand,and I am afraid to eat. My sleeping patterns have changed the last few days. All I want to do is sleep (and eat :) Good luck on your journey of education. At least we live in an age where we can hop online and get our info, and we can talk to other people. It feels really good to be able to vent to people that understand.

mammajamma Rookie
mammajamma
Posted

Just an FYI... Trader Joe's has a gluten-free brownie mix that is so good... mu husband agreed you can't even tell the difference! And yes, reading is key... I printed out the "safe" and "not safe" ingredient lists from this site and won't shop without them (it's only been a few weeks for me as well). Good luck to you!!!!!!!!!!!!!!

mammajamma Rookie
mammajamma
Posted

Whoops, sorry, I see someone else already mentioned the brownie mix at TJ! Sorry for not reading ahead!

ShayFL Enthusiast
ShayFL
Posted

Two endorsements for TJ's brownies means they must be good. We dont have TJ in Tampa FL. Do they ship?

AliB Enthusiast
AliB
Posted
Well, I just got "diagnosed" just a few days ago (The biopsy said yes, the blood work didn't). The doctor feels that my reactions after eating gluten free for a week verify that I have it. I went from an entire month of pain and bloating to relative relaxation, energy and clear-headedness (is that a word?). Here's what I want to know (and I know this is probably posted all over, but this is a big change for me) -

This is exactly why the blood tests are so useless. What were your numbers? I fully believe that if you are displaying ANY antibodies then you are Celiac. If only the 'experts' would define that it would avoid people having to go through extremely invasive biopsies. It's even worse when they do it to children! My test was negative but I know I have it and I believe that all who are gluten intolerant do too. My grandson's tests have come back negative/borderline. How the heck can you be borderline? You either have it or you don't! Who determines where the 'border' sits? If the Ped suggests he has a biopsy 'to prove it' I will go ballistic!

If 1 in every 3 people carries the genes for Celiac then who are all the gluten intolerant people? Do they make up the other two thirds? Give me a break!

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