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Miki

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Miki Newbie

I have IBS, as the doctor's diagnosed it, but instead I have Celiac. The past couple months I have not felt 100% at all for two months! So, I have taken out Gluten and wheat, gosh is it hard. Do you have any ideas about going out to restaurants? A chef card? How long did it take your body to get used to not eating bread?


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Packard Newbie
I have IBS, as the doctor's diagnosed it, but instead I have Celiac. The past couple months I have not felt 100% at all for two months! So, I have taken out Gluten and wheat, gosh is it hard. Do you have any ideas about going out to restaurants? A chef card? How long did it take your body to get used to not eating bread?

My condition is not as bad as some and I take medications for psoriatic arthritis that also mitigates the effect of wheat contamination. Keep that in mind while reading my response.

I eat in restaurants frequently.

I consider certain foods "safe". Some examples are: steak, roast chicken, broiled chicken, baked potatoes, eggs, omelettes, bacon, 100% beef hot dogs and hamburgers (no bun).

Not safe: Salisbury steak, anything with gravy,

Anything that is not intact as grown. For instance: Steak, safe; Salisbury steak, not safe.

100% beef burger, safe (if you trust the label); beef chili, not safe.

I find that there are certain Chinese restaurants that I can eat in as long as I don't eat anything with noodles (or egg rolls), or gravy or breaded sweet and sour dishes. Then there are other Chinese restaurants that I cannot eat at. Find one that works for you and stick with it.

I do find that I am consuming too many eggs another health issue.

McDonald's claims that their salads are OK (but I don't enjoy them). Burger King will prepare burgers without the bun, but skip the french fries.

I routinely ask for a knife and fork at McDonald's and remove the bun and eat it. For other people there would be a cross contamination issue.

Add only one new item a day and see if you are bothered by it. If not, add it to your list.

Many fast food restaurants have websites and list their gluten free items.

Over time you can build a list of acceptable foods to eat.

There are many grilled options at TGIF (Fridays) that I have no problems with.

But like I said, my condition may not be as severe as yours. You will have to build your own list. Be aware that every once in a while you will get blindsided by a restaurant. Wendy's claims that the chili is gluten free. From several experiences I would say that it is not.

nettiebeads Apprentice
I have IBS, as the doctor's diagnosed it, but instead I have Celiac. The past couple months I have not felt 100% at all for two months! So, I have taken out Gluten and wheat, gosh is it hard. Do you have any ideas about going out to restaurants? A chef card? How long did it take your body to get used to not eating bread?

There's a link somewhere for the triumph dining cards. i don't leave home without them. And since you have Celiac, you must be very careful about cross-contamination issues. At one restaurant I used my cards and got something safe (probably eggs) and was told by my server that it would take a little while as the cook had to clean the grill before fixing my meal. But darned if I didn't get glutened anyhow. The longer you are totally 100% gluten-free, the sooner you will get that bread "fix" out of your system. And who knows, you might turn out to be a terrific gluten-free baker! There are some great cookbooks out there for breads made with gluten-free flours. Celiac isn't a death sentence, nor do you have to cut restaurants out of your life. Read all the threads you can, you'll learn a lot.

Annette

floridanative Community Regular

Thanks goodness I saw your post Packard. I was beginning to think I'd never be able to eat out and travel again without such worry that it would not be worth it. Travel is a huge part of our lives as is eating out. Still processing the info that I do have Celaic (dx's 1 week ago today) so obviosly haven't attempted eating out yet. My goal is to go out for Valentine's day which is the 20 year anniversary of mine and hubby's first date.

But I don't have the classic gastro symptoms so I don't know how even if I'm careful and take the dining cards everywhere, I'll know if I get 'glutened'. Anyone have any suggestions?

Packard Newbie
Thanks goodness I saw your post Packard. I was beginning to think I'd never be able to eat out and travel again without such worry that it would not be worth it. Travel is a huge part of our lives as is eating out. Still processing the info that I do have Celaic (dx's 1 week ago today) so obviously haven't attempted eating out yet. My goal is to go out for Valentine's day which is the 20 year anniversary of mine and hubby's first date.

But I don't have the classic gastro symptoms so I don't know how even if I'm careful and take the dining cards everywhere, I'll know if I get 'glutened'. Anyone have any suggestions?

Everyone's sensitivity is different.

I can tolerate trace amounts of gluten so if I take a hamburger off the bun I don't get sick. There are others who feel that the contact with the burger is enough to contaminate the food with gluten. It may be for others, but not for me.

You will need to come to your own conclusions.

Celiac is a big pain as a diet. Most diets all you need is will power. Not with celiacs. No one willingly goes off diet as the consequences are too unpleasant to discuss.

But it is a poor decision, in my opinion, to eliminate more foods from your diet than you absolutely have to. There are too many that get bounced as it is.

I don't try to bake gluten free. I try to find substitutes.

Rice Krispies, fried eggs, cream of rice, are all viable substitutes for fried eggs on a roll or pancakes.

Burger King and Wendy's will serve minus the bun. Watch out for French Fries as they are sometimes floured to hold the crispiness or the flavorings.

Bakes Potatoes and Corn on the Cobb are generally safe everywhere.

Ice cream makes a good desert and with Haagen Daz I feel I can get over the loss of brownies.

The Cheese Cake Factory will prepare gluten free at their restaurants. They also sell cheese cake at Sam's Club (frozen). They list the ingredients for the graham crust separate from the cheesecake so you can read the ingredients and slice off the graham crust for yourself and serve the entire piece to the other members of your family. Or for guests and not feel like you are being left out.

All I am saying, is if you stop and think about what you are doing, you can get by reasonably well.

There is always the possibility that someone will blind side you and you will get symptoms. I find that it is few and far between. The occasional large contamination only gives me mild symptoms that I am able to shake off quickly and continue on.

Celiac is a pain, but with a good attitude and thinking, it is not quite as bad as some make it out to be unless you have a really bad case.

My advice is don't make it worse than it really is. Learn your own condition and what you can do and can't. If needed, keep a notebook so you don't forget.

And DON'T ELIMINATE MORE FOODS THAN YOU REALLY HAVE TO.

There is a general feeling amongst Celiacs that if eliminating some foods made them feel this much better, then imagine what eliminating whole classes of foods will do for me. Don't fall into that trap.

floridanative Community Regular

Well since I don't have the bad GI sypmtoms anyway, I won't be giving up any foods (more than necessary of course). If something starts to make me sick I'm going to keep info in a diary so I'll be able to figure out what the culprit is. But my main problem is that I don't think I'll know when I get glutnend by mistake, thereby making it much scarier to me to eat out. Which by the way I'm used to doing twice a week. And we don't do chain restaurants unless we have no other choice when traveling by car. I already ate lots of fresh foods (meat, veggies, fruit) so the main change so far has been using gluten-free rice pasta. I don't think I'll have that much trouble following the diet - explaining my dietary restrictions will probably cause me more pain emotionally than the diet itself. But to eat out when I won't know when I ingest gluten by mistake. That seems pretty risky. Has anyone else dealt with this - who still eats out that is?

VegasCeliacBuckeye Collaborator

In my opinion,

I would not touch a dessert that has a graham cracker crust --- the chances for cross-contamination are huge.

Also, Rice Krispies are not gluten free -- they have barley in them.

Even if you do not feel a symptom after eating gluten, it could still hurt you...I would exercise enormous caution when it comes to getting used to the diet. The biggest reason for avoiding french fries is not flour, it is because the fryer has had other things fried in it that have gluten (poppers, onion rings, mozz stix, nuggets, etc) and if it made with flour, then you should avoid the french fry at all costs anyway!!!

Most people have more than just a small reaction -- it is difficult for most of us to simply "shake it off" -- I am lucky that when I am glutened, it only lasts a couple of days, but some folks on here it lasts a week or more...

If any of your food has touched something with gluten, DO NOT EAT IT!

JMO

Here is my advice on eating out at restaurants:

Dining Out is 90% confidence/preparation and 10% luck

The luck comes from the fact that cross-contamination occurs and it is tough to 100% eliminate it.

The 90% C/P is how you handle yourself at a restaurant and how educated you are (preparation).

When I know I am going to a restaurant, these are the steps I take:

1. At the Hostess stand, ask them for a menu and a gluten free menu (you may get a weird look, but you may not)

2. When the hostess seats you, ask to talk to a manager immediately.

3. Tell the server to get a manager (order water for now)

4. When the manager comes over, explain to him in your words (or give him a gluten-free dining card) and ask to speak to the chef.

5. When the chef comes over, make sure he understands about cross-contamination (non-dedicated fryers, clean pans, clean utensils, clean salad mixing bowls, clean towels to wipe the plates with before they go to the table --- chefs always wipe the plates and it usually is dirty or contaminated towel, etc etc)

6. Also talk to him about the usual violators (flour, roux, fake chicken stock, bouillon, breadcrumbs, soy sauce, beer, etc etc)

7. Ask for recommendations from the chef (put the dinner in his hands and out of your mind) -- don't forget dessert -- I usually get creme brulee or mixed berries!

8. Order wine and relax with your gluten-free meal!!

9. Some of these steps can be prepared for ahead of time by talking to the chef and/or general manager before you go in to eat.

10. It sounds like a bit much, but its your body -- these guys are in the hospitality business -- they have trained to be able to accomodate their guests' needs --

CT

p.s. You will take a bigger risk of getting sick if you eat out at "Peak Hours" -- these are the busiest times of the day for the restaurants -- If possible, eat lunch from 11-12 or 1-2 and dinner from 5-6 or 8 and beyond

If the restaurant is packed with people, it is conceivably more difficult for them to "watch" your meal and make sure it doesn't get screwed up (PF chang's has notoriously screwed up my chicken wraps when they are busy -- there is a difference between the normal chicken wraps and gluten-free wraps -- the problem arises when the restaurant is packed and they have 7 tables all ordering chicken wraps at the same time -- which one is yours???? Gets confusing for the staff sometimes...

the easiest thing to order at a restaurant is plain, grilled, un marinated, un-seasoned beef/chicken/fish, a baked potato and steamed, un-seasoned veggies...


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happygirl Collaborator

I am a bit concerned about some of the information posted here. Although people may not have a reaction to hamburgers with buns taken off or eating foods that have touched wheat/bread, gluten is still potentially (and probably) being ingested. From my understanding, it does not necessarily matter if our outward symptoms show that we have been glutened....but if there is gluten in our system, it still sets off the autoimmune reaction. Many Celiacs have no symptoms at all. This does not mean that they have "less" damage or "no" damage....nor does someone with strong, overt sympoms mean that they have "more" or "less" damage (necessarily).

Please use extreme caution about everything that goes into your mouth!!! Good luck with the diet. I have found a lot of great information here!

floridanative Community Regular

Wow Broncobux! Thanks for all the info. I ordered the Triumph dining cards so hopefully I will be educated enough to eat out for Valentine's day dinner.

VydorScope Proficient
p.s. You will take a bigger risk of getting sick if you eat out at "Peak Hours" -- these are the busiest times of the day for the restaurants -- If possible, eat lunch from 11-12 or 1-2 and dinner from 5-6 or 8 and beyond

This is KEY! If I pull up to a place and theres a wait for a table, I move on. As a former short order cook and wiater I know how it gets behind the scense, and I would suggets you stay away from resturants when they are busy. Chance for ppl with the best of intentions to mess up, increase exponential with the pressure of crowds....

I am a bit concerned about some of the information posted here. Although people may not have a reaction to hamburgers with buns taken off or eating foods that have touched wheat/bread, gluten is still potentially (and probably) being ingested. From my understanding, it does not necessarily matter if our outward symptoms show that we have been glutened....but if there is gluten in our system, it still sets off the autoimmune reaction. Many Celiacs have no symptoms at all. This does not mean that they have "less" damage or "no" damage....nor does someone with strong, overt sympoms mean that they have "more" or "less" damage (necessarily).

Please use extreme caution about everything that goes into your mouth!!! Good luck with the diet. I have found a lot of great information here!

Laura yoru so right, crums left ont he lettuces/burger/etc may NOT cause any symptons, but can still cause damage. Your playing with fire, and with any good reason since burgers can easly be made safly gluten-free.

Wow Broncobux! Thanks for all the info. I ordered the Triumph dining cards so hopefully I will be educated enough to eat out for Valentine's day dinner.

I would not go out on V-Day, see my reply to him. :D

elonwy Enthusiast
My condition is not as bad as some and I take medications for psoriatic arthritis that also mitigates the effect of wheat contamination. Keep that in mind while reading my response.

THIS IS A VERY IMPORTANT STATEMENT> PLEASE NOTE THIS PERSON HAS "NON-STANDARD" CELIAC RESPONSES!!!!!

"I consider certain foods "safe". Some examples are: steak, roast chicken, broiled chicken, baked potatoes, eggs, omelettes, bacon, 100% beef hot dogs and hamburgers (no bun)."

Roast chicken could be an issue, as many roast/rotisserie places use a wheat based glaze/sauce.

Anything made with chicken or beef broth is also suspect.

"I find that there are certain Chinese restaurants that I can eat in as long as I don't eat anything with noodles (or egg rolls), or gravy or breaded sweet and sour dishes. Then there are other Chinese restaurants that I cannot eat at. Find one that works for you and stick with it."

Chinese food is probably the hardest to order gluten free, with Thai and Mexican being the easiest.

"I routinely ask for a knife and fork at McDonald's and remove the bun and eat it. For other people there would be a cross contamination issue."

THIS IS NOT OK!!!!

"Many fast food restaurants have websites and list their gluten free items."

But like I said, my condition may not be as severe as yours. You will have to build your own list. Be aware that every once in a while you will get blindsided by a restaurant. Wendy's claims that the chili is gluten free. From several experiences I would say that it is not.

I'm not knocking you at all Packard, but advice to a "newbie" needs to be very carefully given out. I was given some bad information when I was new, and it kept me sick a bit longer than neccessary.

It was mentioned that even if you don't have an immediate GI reaction, damage is still being done. THIS IS VERY TRUE. If your immune system is responding to the gluten, then damage is being done to your body. Picking food apart to "eat around" the gluten is a bad idea and should be heartily discouraged.

That all being said, I have very strong GI symptoms, strong now that I am gluten free than before, and I eat out all the time. I use the triumph dining cards and a great deal of belligerent persistence to keep myself safe.

If you're not comfortable talking about these things to wait staff, I would suggest not eating out as much until that part gets easier. You have less chance of accidental contamination if you have a good line of communication with the wait staff, managers and food preparers.

Build up restaurants you like and go to often, so they get used to you, but Always ask the same questions, because they tend to forget. I went only to places than had gluten-free menus for the first while, then got more comfortable branching out.

A menu guide can also be helpful, to help you pick what is safe. Until you get used to it, sometimes its hard to know what the right choices are. Triumph cards are great with that too, as they are cuisine specific and make recommendations based on what kind of restaurant you're at.

Broncobux has some great advice, and we've all either gone through or anre going through this learning curve.

Open Original Shared Link

My body get used to not having bread? My body was thrilled, my brain however took a little longer. Check out Kinnikinnick breads, they are awesome. Its expensive, but i keep a loaf in the freezer and when I really need that grilled cheese or piece of toast I just grab a piece or two and have at it. I have also toasted my own bread and brought it to restaurants in a tupperware in order to take advantage of yummy appetizers that need bread. Some places will offer to toast it for you, but I've seen what those kitchen toasters look like, and the cross contamination is too great a risk for me.

Be careful, in the beginning it is easy to splurge on all the rice-based products that are out there, pasta, bread cookies, especially once you start tasting how good they are. Alot of rice based products are low on fiber and can have a blocking effect, so you want to make sure you're getting plenty of fiber and veggies with it.

Good luck, welcome, and know that it gets easier with time.

Elonwy

floridanative Community Regular

Well luckily I got a whole list of safe restaurants that other Celiacs have had success with (her ein town) from my support group. Many of them are high end of course which is fine for the 20th anniversary of our first date (Valentine's day) after all. Certainly I will go very well prepared and I'm not shy about ordering whatever I want or in this case need, as I'm one of those picky eaters with lots of instruction for the server anyway. Also, I will go not during peak dining time. Thank you all for the most helpful advice.

Packard Newbie
I'm not knocking you at all Packard, but advice to a "newbie" needs to be very carefully given out. I was given some bad information when I was new, and it kept me sick a bit longer than neccessary.

It was mentioned that even if you don't have an immediate GI reaction, damage is still being done. THIS IS VERY TRUE. If your immune system is responding to the gluten, then damage is being done to your body. Picking food apart to "eat around" the gluten is a bad idea and should be heartily discouraged.

That all being said, I have very strong GI symptoms, strong now that I am gluten free than before, and I eat out all the time. I use the triumph dining cards and a great deal of belligerent persistence to keep myself safe.

If you're not comfortable talking about these things to wait staff, I would suggest not eating out as much until that part gets easier. You have less chance of accidental contamination if you have a good line of communication with the wait staff, managers and food preparers.

Build up restaurants you like and go to often, so they get used to you, but Always ask the same questions, because they tend to forget. I went only to places than had gluten-free menus for the first while, then got more comfortable branching out.

A menu guide can also be helpful, to help you pick what is safe. Until you get used to it, sometimes its hard to know what the right choices are. Triumph cards are great with that too, as they are cuisine specific and make recommendations based on what kind of restaurant you're at.

Broncobux has some great advice, and we've all either gone through or anre going through this learning curve.

Open Original Shared Link

My body get used to not having bread? My body was thrilled, my brain however took a little longer. Check out Kinnikinnick breads, they are awesome. Its expensive, but i keep a loaf in the freezer and when I really need that grilled cheese or piece of toast I just grab a piece or two and have at it. I have also toasted my own bread and brought it to restaurants in a tupperware in order to take advantage of yummy appetizers that need bread. Some places will offer to toast it for you, but I've seen what those kitchen toasters look like, and the cross contamination is too great a risk for me.

Be careful, in the beginning it is easy to splurge on all the rice-based products that are out there, pasta, bread cookies, especially once you start tasting how good they are. Alot of rice based products are low on fiber and can have a blocking effect, so you want to make sure you're getting plenty of fiber and veggies with it.

Good luck, welcome, and know that it gets easier with time.

Elonwy

There is a lot of information given out in these forums without any scholarly, medical, or scientific studies being referenced, and without any qualifying remarks to precede what is often times opinion. I qualified my remarks. Also, there is a generally recognized threshold of acceptable levels of gluten and if you are very careful with your regular diet, you should be able to keep within the threshold even with minute amounts of cross contamination. Some of these statements are more scare statements than facts. Where are your referenced studies?

I suggest the original writer consult: https://www.celiac.com/st_prod.html?p_prodid=994 for more informed response.

VydorScope Proficient

This thread will quickly turn into "my link is better then yours", so before that happens let me as you thinks...

WHY play with fire? Sure, 1 ppm of gluten is probaly safe, CODEX says 200ppm acutally, so you MIGHT get away with taken a known gluten source (burger with bun) and "remove" most of the gluten by taken off the bun, and it MIGHT be enought to be safe... but might not be... when you can easily make it completly gluten-free to start with?

VegasCeliacBuckeye Collaborator

The problem with this thread is that it does not take into account individual sensitivites. Some people can tolerate more/less than others (in relatively small amounts)...

This is akin to my best friend Mark (who is Italian) telling me (Scottish/German/English) that since he does not sunburn badly in the middle of summer than neither will I (ha!!). Mark tans extremely dark -- whereas I turn a nice "Golden Red"...

Pack may be able to withstand a larger amount of gluten than Floridanative, Elonwy or myself, but obviously he/she should not be making medical assumoptions regarding our respective tolerances/intolerances to gluten -- if anything, Packard should be airing on the side of caution, not chance...

The point to be taken is that until people absolutely know their gluten limitations/tolerances, they should avoid gluten at all costs!

JMO

happygirl Collaborator

Does anyone know what the 'safe' level translates to in real terms, by the way!

I know that I, and many others, get sick at a very low level. I see no need to put any amount of gluten into my body if possible.

I don't think that anyone's responses on here are scare tactics. I know that when I get accidentally glutened (by say, taking off a bun), I am in pain and very sick. I was trying to help someone potentially prevent themselves from getting sick.

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      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
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