lucky97

Eat NOTHING that isn't labeled gluten free...or you can't at least cross-reference from two very good sources that it's ok to have.  I used this forum TONS at the start.  You can probably look back at my posts...lol.

And yes, "eat the perimeter" of your grocery store to start, especially if your intestines are on the mend.  And they will, it takes time.  I was very, very sick and was almost diagnosed with liver auto-immune disorder.  It takes months of eating simple and clean, like super clean, but it will pass and you can start adding other gluten-free stuff back in later (like gluten free processed stuff, though it's not ever great for you).  

I was diagnosed when I was older, so it was a big, big change at first.  It was like learning to drive.  Intense at first, but second nature now.  But, like driving, you can't fall off or become careless with celiac and being diligently gluten free.  It's easier to do now than when even I started.  You will get the hang of it and will get better.

Peace.

About two hours...or less.  Stomach cramps, and the "D."

I've been "glutened" less than a handful of times over the years since my diagnosis (and going gluten free) like seven years ago...but it's always the same story.

Oddly enough, a Red Bull seems to help me recover if it happens, honest.

I see this sauce online and labeled gluten free.

Anyone have experience with this sauce at all?  Would SO love to try it, if I can get some feedback here.

Thanks!

I don't think I can trust it.  Just too much wheat around.  At restaurants with gluten-free menus (like Longhorn's) I perceive a lot less likelihood of CC because, well, they're not pounding out dozens of regular pizzas every hour.

As you can see everyone here has gone through your stage.

I would perhaps just add that, as now your intestines are healing, it may be better to eat the healthier stuff for now.  It's almost like the paleo diet food I guess.  Yes it's more cooking but even that becomes part of the habit too.  I seem to recall I think that it was about six months or so before the doctor said my blood work reflected that I was in good shape.  I can't explain the particulars because I can't relay them accurately, but in other words it took six months of true "gluten free" before my blood work normalized.  And it was exponentially better each test, but it took that long in my case.  And my regular pre-sick weight came back after about one year, but I had a pretty unusual liver-related symptom of the celiac that also had to recover (and it did).

Peace.

Four years ago I was in the EXACT same spot, I got diagnosed in my mid-40s.  I lost lots of weight and had no idea what to eat at all.  I was starving.  And little or no alcohol for six months since the intestines were injured.  That was real tough.  What to drink/not drink is a whole other thread...but on to my very first gluten free diet from the first days and weeks:

Breakfast--gluten free cereal (lots of the Chex are gluten free now) with sliced bananas because they're more filling.  I couldn't do milk at first, so I used soy milk at the time.  You get used to it.  Scrambled eggs and a baked potato (believe it or not).  I was too lazy to make home fries.

Lunch--tuna or gluten free lunch meat on gluten free bread.  Goodbye Gluten (believe it or not) is about the only gluten-free bread I can tolerate taste-wise...but know that nobody's really gotten gluten free bread close.  I gave up on frozen gluten free bread since it would disintegrate as soon as it thawed.  You can throw in a fresh ingredients salad with gluten free dressing (lots now, look them up by brand).  I did lots of salads with canned tuna in them.

Snack--my first post-celiac snack was Nestle's toll house semi-sweet chocolate chips (most are just now being labeled gluten free, check closely on the back) and Diamond Almonds mix.  Most Diamond nut products are gluten free, look that brand up too if you like nuts.  I had to gain weight back, thus the nuts mixed with chocolate for my sweet tooth.

Dinner--Broiled or baked chicken breasts, fish, pork...all the raw stuff you cook yourself.  Steaks and baked potatoes with gluten free margarine like Olivio or real butter (look up your brand).  Steamed raw vegetables or from frozen (the plain, frozen vegetables).

Progresso has labeled soups gluten free right on the front or the side of the can (in smaller print with some other facts).  There is "gluten free" Mac and Cheese made by Annie's I think it is.

A note on meats...DON'T get any meats that say things like "up to 12% solution" or whatever.  Economy grocery stores carry those a lot, so steer clear there.  BUT at the same time there's a store here called Aldi's which is an economy store but labels TONS of their regular products as gluten free, I've seen the labeling almost double it seems in the four years since I had to start gluten free myself.  If it says gluten free, you are good to go.

YOU WILL GET THIS DOWN...trust me and after awhile it just becomes regular.  No, you can't go out to eat many places like you used to because you've gotta get gluten free...but there's more places than ever before with a gluten free menu and you can go there ONCE in awhile.  If you're not negative for active celiac yet (the <20 Iga reading) DO NOT take chances.  Your life truly depends on stopping the active celiac condition in your gut but it CAN be done...but you must eat only whole foods or goods (think the "perimeter" of the grocery store) OR gluten free labeled products.  It blew my mind the first time I walked into a grocery store and realized I couldn't eat most of the of the stuff in there.  I never gave it a second thought.  Now I don't even think about that anymore, and just go for the stuff I know I can have and the mind-blowing is in the past.

One of my first celiac tricks was...if I wanted to know if I could eat something and it wasn't labeled, I would need to see three sources that told me it was gluten free:  these boards, manufacturer's website and a third place like gfoverflow.com.  If I got three "yes" answers for gluten free then I could eat it.  For example, Heath bars (my weakness).

After awhile, you will have quite a regular and full list of "safe" foods.  The hard part is passing up most things everyone else eats (even with the family...they'll have to accommodate you there) and sticking to what you KNOW you can eat.  No guessing, because there is no cheating.  Your intestines have been injured and have to heal.  And the WILL heal and stay healed with gluten free eating.  But you can't cheat, you'll get sick all over again and you put yourself in a high risk category for really, really uncool illness.

It was hard as hell for me, I hear ya.   But like anything new you will question, learn, assimilate and incorporate it into your daily life and routine.  You are now the FIRST source and LAST word for celiac among your not-understanding or even well-meaning friends and don't be afraid to be really on top of it.  Get these good habits right at the beginning and honest, with time it's like driving a car.  Second nature.

Not second nature now, but it will be.

I am truly sorry you are having a rough time.

First, I would go to youtube and look up some guided meditation...either voice or music and voice.  I never went for any of that stuff when I was younger but, presented with health problems of my own, I realized I was going to have to do something to slow my brain down so I can start to deal.  I really had to work on training myself to slow down and relax the body but it does help and you get better at it (if you've not done it before).  Fear and anxiety can be tamed and toned down so your brain can get to work figuring things out...honest it was almost as hard as the new celiac itself to get used to.

Secondly, look for a psychologist/psychiatrist that deals with health issues and/or other things specific to you.  I always looked for older, more experienced people because they've seen more...at least that was my take on it.

If it's mainly celiac that's got you down these boards are great for finding info and asking questions, but sometimes answers aren't posted right away.  If it's new celiac, and older in life, know that 98% of us (including myself) were also completely overwhelmed but the "logistics" of living with the thing DO work out.  Honest, the confusion passes and the new rules just become normal.  If there are other things going on as well, other boards for those things can be excellent and I did that, too. It helped.  You can pull apart what you need to know and get answers in different places.

Peace.

Whoops you beat me to an update on this subject.

Actually being gluten free did not provide me the more "miraculous" results of feeling better and more energy, etc..I've been gluten free over three years.  BUT without gluten my liver stopped failing, I wasn't yellow, the doctors were amazed and pleased...that was good enough for me. Mine was an extremely unusual diagnosis.

Now...actually Escitalopram Oxalate is a Camber Pharmaceuticals product and ALL Camber products are gluten free.  It says so right on the home page of their site:

Open Original Shared Link

So anyway this is the first time I did research myself on a prescription medication and wanted to share it for those wondering about this generic for Lexapro.

Ok...how about Escitalopram Oxalate (the generic for Lexipro).  The pharmacist looked at all the ingredients and did not think it had any gluten in it.

Anybody here have experience with this drug???

Or other gluten free options for depression and anxiety?  Of course insurance company won't pay for the brand name Lexipro.

Hi,

After several years off Lexipro (since before I was diagnosed with Celiac) my doctor thinks I should really go back on it.  What's the word on Lexipro these days or maybe its generic (don't know what it is) being gluten free?  Anybody have any experience with it?  Truth be told, I probably need it or a gluten-free equivalent...

Thanks!

Hi there,

I was wondering if anyone knows if Wellbutrin or Lexipro are gluten free? Anyone here have experience with these? They've been indicated for me (one or the other) but don't know if they're safe for Celiacs.

Thanks!

But if something is labeled "gluten free," and there are things labeled gluten free here in the the USA (I will assume <200 ppm) AND those are the preferred products, how will you know? That just means they're <200 ppm. Unless you are referring to a cave man/whole food diet perhaps.

I state this is reference to the earlier post that notes Theraflu was stated to have <10.0 ppm of gluten, well below the current USA standard for "gluten free" which is what we're eating. Does anyone see what I'm trying to say? It would seem to reason Theraflu is as or "more gluten free" than the standard gluten free products we're eating now. Thus safe for Celiacs.

The question is: Do celiacs use Theraflu?

Some people are more sensitive than that. I live by the rule that no amount of gluten is ever safe. I will not knowingly ingest gluten, on purpose, no matter how small the amount. I have gotten extremely sick from "gluten free" products that are below 20 ppm in the past so clearly I am someone who can not live by that proposed standard. It isn't simply because I got sick though, it made me rethink the whole philosophy of it. Because of how potentially dangerous it is to us, no amount of gluten is ever okay, period. Why the hell should we knowingly risk a product with gluten when we are already sick when there are perfectly good products on the market that are gluten free?

But if something is labeled "gluten free," and there are things labeled gluten free here in the the USA (I will assume <200 ppm) and those are the preferred products, how will you know? That just means they're <200 ppm. Unless you are referring to a cave man/whole food diet perhaps.

why is it so hard to find current info on meds? grrrr. just thought i'd share something from the theraflu site. under the powders section it had a faq and one said does this have gluten?

"Yes. This product contains a trace amount of gluten (<10.0 parts per million)."

Of course their other products did not even have a faq so i could check if those were safe.

I guess I'll be coughing all night again for the third night in a row.

But the new proposed standard is <20 ppm. So would one not consider Theraflu safe then???

This is good news...I am proceeding to the store right now on my way to work. Theraflu used to do the job for me in the past before I got diagnosed a few years ago.

Hi,

I've stayed away from taking much Allegra-D since getting diagnosed about two years ago because I couldn't get a definitive answer on, of course: IS IT GLUTEN FREE? I do take it when I can't stand it anymore but heck that's no way to live.

It's too bad, because it's the best med for my seasonal and dust allergies.

I would really like (need) to start taking it again. Other medications, over a LONG period of time even in my pre-Celiac life (up to age 45) don't seem to do it for me.

I just read tonight somewhere that Allegra-D contains "corn gluten" but not the gliaden gluten. So...

1. Do people with Celiac take Allegra-D with no ill-effects in the Celiac department?

2. What in the Sam Hey is CORN GLUTEN and do I need to be worried about too? I consume gluten free soups, and they have corn in them. Heck, corn is everywhere too.

I'll hang up and listen to your answer(s).

Thanks!

So from what I see here, oats might give a digestive issue, but no damage? So maybe, seeing I don't get much by way of digestive issues, I might be able to eat them? It's been almost a year gluten-free now. I think I may just try oats, and if they work, I can get oat flour?

Now, something a bit off topic:

Dani, every time I scroll down and see your picture I think, "What a very pretty woman!" I'm sure everyone here will agree with me. Your old picture was nice, but this new one is even better. I just wanted to let you know. We all need a lift from time to time, and I hope this puts a smile on your face. You may not FEEL good, but you LOOK good. I'm just the opposite today. Feeling pretty good, but my thinning hair is making it harder and harder to look good every day. (Time to start looking at wigs I guess. )

That's a new one to me...gluten free oats (like Bob's Red Mill) can give some Celiacs "digestive issues," but that is not to be confused with being "glutened" and introducing something damaging to your intestinal tract? How in the world do you tell the difference? Unless you can look inside your intestines, I don't think you can.

I have had Bob's Red Mill oats and have felt fine, even within 6 months of going gluten free. How do I know I'm not causing damage down there with this food (but to be honest I don't eat it a lot)?

Yes, I would. Since you are buying the product in the US, any wheat content must, by law, be clearly disclosed.

Ok then, thanks!

Different rules in different places. Without actually seeing the label, I am speculating, but the product could be considered gluten-free under European rules while containing Codex wheat starch. Under Canadian rules, such a product can not be labeled gluten-free. In the United States, there is still no rule defining "gluten-free."

Would you consider it "safe" to eat their other bars, also labeled "gluten free" as this one is, but that do not list wheat as an ingredient? This particular bar is the only one of their selection I see with this peculiarity. They do have other chocolate bars that are NOT labeled gluten free, so I thought I they were safe for us Celiacs.

Riddle me this, Batman:

Choceur Strawberry Yogurt Milk Chocolate Bars have a "gluten free" symbol (the one with the wheat) on the back, but ALSO list WHEAT as an ingredient.

Can someone explain that one to me?

These bars are made for Aldi's (where I shop) in Germany. They have a variety of bars that are labeled "gluten free" but don't list wheat as an ingredient like this specific bar.

Thanks.

Hi,

The past couple weeks I've been getting several headaches per week...not intense, just mild.

The only change in my diet really was I've been eating this Choeceur chocolate from Aldi's labeled "gluten free" or "naturally gluten free." It's made in Austria for Aldi's does not contain anything about any "wheat" in it's allergen statement. Chocolate is just one food I'd like to have back.

It's odd because I rarely get headaches.

I've been eating gluten free for almost a year and a half. I know a lot of celiacs seem to report their headache symptoms lessen after going gluten free.

Anyone have that experience?

Well I hate to ask the obvious stupid question but...

Then how are all the USA Celiacs staying gluten free if they're trusting gluten free labels on food that might be cross-contaminated or NOT gluten free because nobody tests it?

I thought the cross-contamination issue was for things NOT labeled gluten free, in which case you call the manufacturer.

I'm very confused by all this now.

I think most people fail to think of celiac disease as being a serious life-threatening autoimmune disease.

Most view it as "gastro problems".

Clearly, this is a mistake.

I understand that Celiac is part of a serious autoimmune condition, but what do I do beyond trying to effectively manage the "gastro" aspect of it? What am I missing by doing that alone? A little confused by that point.

I'm seeing more and more products specifically labeled "gluten free," which is a good thing for us I am led to assume.

How exactly does a product get to have the "gluten free" label? I see this label in several forms...the "certified gluten-free" label, the words "gluten free" above a bar code, some Giant Eagle soups labeled "gluten free" right above the words "product of Canada."

I've seen "gluten free" with the wheat symbol, and the same symbol that says "naturally gluten free."

Some products say gluten free on their main label, like Bio-Tech protein powder that is "wheat and gluten free." Isn't that redundant?

Are all these products tested before they can label them like that? In another thread I asked about Choceur chocolates I found at Aldi's here (I was super thrilled...missing chocolate) but someone replied that cross-contamination could still be an issue.

I thought "Well that's crazy!" Then what IS safe to eat then if something can be labeled "gluten free" but could be cross-contaminated.

I'm confused now.

I've been in special ed. for 20 years. Some of the things that pass for "autism," and I am FULLY aware of what things look like all over that spectrum, I think "REALLY?"

1 in 88 I've heard recently??? Come on.