I Cant Take It Anymore Someone Help

[frec]

I agree--the gluten free brownie mixes really make celiac life worth living.

I think it would be really hard to deal with this as a teenager. The hardest time for me to stay on the diet is when out with friends, and my friends take my diet very seriously. But watching them eat pizza or desserts...well, sometimes I want to throw a tantrum and I am 52! Could you carry some really good snacks in your backpack for those times after school when you and your friends stop somewhere for junk food? (I carry treats in my car and in my purse.) If I know I'm going to a party I eat before the party.

One more motivating point--if you eat gluten, your intestines won't heal, and you will probably develop additional food intolerance problems--dairy, soy, corn, potatoes--just look at the lists people have on this website. Digestive problems also really mess up your social life. It's not worth it.

[Judyin Philly]

Dear Will

I said I would get back to you. Won't try to write what I lost earlier as my 'friends' note to you says it better than i ever could.

Remember, this is not to scare you, but help you ok? She was having blood work at the hospital on Monday ...4 Hrs of biopsies on wed and Friday will find the new cancer treatment to try again for her. She took time to care enough to come to your page and read and write you a note.

It is something that i hope you will find helpful. She is a wonderful caring Mother and Grandmother.

Judy

I went to c.com and read Will's post.

You can give him this piece of information to him if you would like.

Will,

I am so sorry that your sister and friends are treating you this way. May I suggest that your parents take her along with you on your next doctor visit. Your doctor needs to have a talk with your sister about celiac and what it does to your body. Any amount of gluten...the smallest molecule of gluten will do damage to your system. You are so very fortunate to have learned at an early age that you have celiac disease (I'm just so sorry that you have to have it, but you can now control your diet. I was not that fortunate..I found out when I was 60 yrs old that I had celiac...this was at the same time the doctor discovered that I had cancer.)

As far as eating out...just learn to ask for the manager (you can do this yourself), let the manager know that you can not have anything with gluten- every manager I have talked with has been very helpful.) I find that if you are very polite...you get very helpful service.

Next, I think what you are looking for is something you can have that is a comfort food (like deserts or snacks). You can Google... Rice Chex...they have a gluten free rice chex now....it comes in a blue box and marked gluten free. When you get to their web-site click on gluten free recipes. There are some fun recipes that even you can make.

Also go to, pamelasproducts.com. They have some yummy cookies...I love the double chocolate ones and also the peanut butter ones.

Here is a recipe that I make...yummy and my non-gluten friends do not even know that it is gluten free...TASTES GREAT....this is something you can make yourself- that's if mom will allow you.

Dump Cake

1 can strawberry pie filling ( or you can use cherry pie filling or apple pie filling)

1 can pineapple chunks with juice

1 box gluten free yellow cake mix- I use Pamela's

1 stick butter or margarine, sliced (since you are vegetarian you could use one of the non- dairy butters)

1/2 cup pecans chopped (optional)

Pour pie filling, pineapple chunks with juice, and pecans in an 8" square baking dish. Spread cake mix (in powder form) evenly over mixture.

Dot cake mix with slices of butter. Bake at 350* for 1 hour or until top is brown.

Good Luck!

Judy's friend

[GFinDC]

Hi Will,

I'm an old fart as they say by comparison to you, but I can sympathize. I have a couple ideas you can consider.

It may help to look around your area for other people who have celiac. There are quite a few of us lurking out there (2 million or so), and there are probably some celiacs in your age group around. If you can link up with a local celiac group they may be able to help you find safe restaraunts where you and your friends can eat. That way you don't have to miss out on group outings, and they can see that it really is a serious thing. After all places like P.F. Chang's chinese and Outback Steakhouse don't do gluten-free menus for nothing.

I just ordered a Gluten-Busters T-shirt off this site so I can wear it around town to let peope know that celiacs are here, in their very neighborhood. Maybe if you got a ball cap or t-shirt or some such thing and wore it sometimes it would give you a chance to educate your friends also.

Oh snacks. I gots not much there, except peanuts are my favorite. Watch out for any nuts with coatings though, as they often have gluten in the coatings or flavorings. I do like Joyva Halvah. It is a candy made from sesame seed paste and sugar and eggs. And of course chocolate! It is not in the gluten-free food section but just on a shelf, usually in the international section of the grocery stores.

Here is a link to the Celiac Sprue Association which has chapters in many USA states. I am not sure if you are in the US, but if you are it could be a good place to start looking for local celiacs.

Open Original Shared Link

[Paul Jackson]

So you're saying that in the predicament I've described, a celiac, who requires more protein than others and who may even have type-1 diabetes, should skip a meal or two?

[jerseyangel]

So you're saying that in the predicament I've described, a celiac, who requires more protein than others and who may even have type-1 diabetes, should skip a meal or two?

Definately not. As I suggested, it's wise to always have something to eat with you when out. It may not be the most fun but it will keep you from going hungry or getting sick.

[Paul Jackson]

No, missing a meal or two will worsen the state of health of the celiac, who requires more protein than others and who may even have type-1 diabetes. Eating the meal with smallest amount of gluten (e.g., unbreaded fish, plain rice, and fresh green salad at the only Denny's restaurant open at 3 a.m.)--along with the enzyme pill--would be a better thing to do in the predicament I'm describing.

[Paul Jackson]

So, what, may I ask, do you suggest off the Denny's menu, given the scenario that I'm stranded and it's the only restaurant open? Perhaps you could think of a meal with less gluten than unbreaded fish, plain rice, and fresh green salad; but any meal there could be cooked on the same part of the grill as some scary wheat product. And when we've arrived at a decision on the Denny's meal with the smallest amount of gluten, should I forego an enzyme pill because it's not been scientifically proven to help a celiac?

[Phyllis28]

Any Celiac who can not skip a meal for whatever reason should never allow themselves to be put into situation where it is either not eat or eat gluten. As Jersyangel suggested always have food with you to prevent this.

[Paul Jackson]

Actually, sir, according to the University of Chicago researchers, these enzyme pills do work "to some extent."

(Open Original Shared Link )

And--heaven forbid--if you were forced to order a meal off the Denny's menu because you were stranded in a small town in the wee hours, you'd of course order the one with the smallest amount of gluten--just as my previous email states. However, some gluten is unavoidable in such predicament because the Denny's chef cannot be trusted to segregate its foods. Therefore, a celiac should do the best s/he can and order unbreaded fish, plain rice, and a fresh green salad. Again, these enzyme pills do work "to some extent." So, given the awful predicament I've described, why would you eat the meal without such an enzyme pill?

[Paul Jackson]

"There are actually alot of 'snacks' and 'junk food' that we can still have. Alot of ice creams, chips, etc. if that is what you crave. As far as gluten free specialty items...some of it tastes like crap BUT there are alot of good brands and if you ask for suggestions I am sure people will be more than willing to help I know I will help."

There are no "snacks," "junk food," or gluten free specialty items in the scenario that I've described. In the scenario I've described, there is only one Denny's restaurant open during the wee hours, and the celiac is feeling very, very hungry.

[ShayFL]

If you have enough forthought to carry your Glutenese pills, you can think ahead and pack food to eat too so you are NEVER stranded. Nuts and Dried Fruit for instance dont need refrigeration and can be kept in your car. And if a "rural deserted area" has a Denny's, then I can GUARANTEE that they also have a grocery store. Geez! Just carrying the pills and "hoping for the best" is EXTREMELY irresponsible for your health. I couldnt use the word I wanted to use.

[Paul Jackson]

I agree wholeheartedly. Always be prepared. But also be willing to discuss contingency plans. And I hope I never end up in the predicament I've described.

[Paul Jackson]

I never meant to suggest that a celiac 'just carry the pills and hope for the best.' Your suggestion about carrying dried food in the car is a good one.

[Fiddle-Faddle]

Even at a Denny's, the idea should not be to hope for a meal with the smallest amount of gluten, as you suggested, but to speak with the manager and the chef, explain the situation, and ask them to make eggs (all Denny's have eggs) on a freshly cleaned griddle.

I have also had luck at restaurants like Cheesecake Factory and Pizzeria Uno, asking them to make me pizza (on a freshly cleaned griddle or grill) using a corn tortilla for the crust.

But for emergency situations it would be far wiser to plan in advance and carry something you can eat. An immersion coil, a coffee cup, Minute Rice, and nuts (if you are not allergic) are always in my travel bag.

But the poster of this thread is only 13 years old! If he is at a Denny's at 3 am, he has worse troubles than celiac.

[Fiddle-Faddle]

pjmaxx, I just read "the predicament you described." I'm sure you have only the best of intentions, but I really think you are barking up the wrong tree!

Nobody would ever tell someone allergic to peanuts to order something at a restaurant that has the smallest amount of peanuts possible.

It's all or nuthin'. And for celiacs as well as for those allergic to peanuts--it's NUTHIN'. Period. We can't even discuss "keeping it minimal" because that's simply not acceptable. It only takes 1/16 of a slice of bread to cause VISIBLE damage to the villi. This is well-documented.

So none of us can "find ourselves at the only Denny's open at 3:00 am." We MUST plan in advance. And we cannot under any circumstances advise a 13-year-old that those kind of circumstances are acceptable and not going to cause him harm. Heck, he's got a sister who is probably sneaking him gluten, and I don't see his parents on this board anywhere, so he is already apparently (sorry about the pun) without parental support in gluten free-ness. Let's not make it even tougher for him!

[Paul Jackson]

Good Afternoon, Fellow Celiac! While in high school, I did some extracurricular activities that entailed quite a bit of traveling. Both the Forensics (speech) and concert band led me to instances of the kind of predicament I've described. I wasn't in any "trouble" but was pursuing a successful academic career.

I don't believe that it's wrong to "hope" for the least amount of gluten after making all the prudent choices, including the discussion with the Denny's chef that you suggest. (I don't tolerate eggs, by the way; but I won't use this fact to add to the quibbling, a commodity that I've notice is in over-abundance.)

[Paul Jackson]

Thank you for the opportunity to explain my approach to speaking with a young man like Will--which is to be frank and thorough, and to give him the 'lay of the land' with regard to a pending issue. At his age, self-confidence is critical, especially in his situation. That's why I mentioned the two rare exceptions to the general rule that he, as any celiac, does not want to eat any gluten. I don't believe in stating absolutes like they're written in stone; for that kind of one-way communication, he could just as well read a book or attend a lecture

I believe that, given the opportunity for two-way communication, the better approach is to impress a young man with the value of knowledge and self-respect. It shows I have some confidence in him for acting with the courage to reach out to us for guidance, which hopefully will translate into greater confidence he will have in himself. Further, I've urged him to make up his mind, and not to react to his sister's taunting. Finally, in my initial email to Will, I shared two websites containing information for vegiacs like him. Now, s far as I know, I'm the only user of this forum who's shared any such information with him. Let's not "make it any tougher" for me, either.

[tom]

Actually, sir, according to the University of Chicago researchers, these enzyme pills do work "to some extent."

( Open Original Shared Link )

Thanks for the link - I hadn't seen this.

Quoting:

Message from U of Chicago about Glutenease:

"It has absolutely NO merit. The only treatment for celiac disease remains a STRICT GLUTEN FREE DIET! We are working with the American Celiac Disease Alliance to fight false marketing claims like this one!

Just to clarify, while it is true that this intestinal epithelium-associated enzyme in vivo is capable of digesting to some extent gliadin peptides, and while the paper by Khosla in 2002 shows in the rat in vitro that DDPIV (together with other enzymes!) can effectively digest gliadin, there is absolutely NO PROOF whatsoever in any paper published in the medical literature in any journal in any year by any investigator working in any part of the world that shows any protective effect of DPP-IV in patients with celiac disease."

The bolding is mine.

I'm confused how this could be taken as working "to some extent".

******

But seriously, another glutenease thread is the last thing we need.

We should try to refocus Will's thread on Will's issue.

[Paul Jackson]

Calicoe, I don't know how to follow up on such wonderful words of yours. But may I simply to offer a suggestion or two about cookies: My two favorite flours to make them are quinoa and teff. One recipe using teff flour (appearing on the label on the bag of Bob's Red Mill teff flour) is for Teff Peanut Butter Cookies. Besides the recipe-in-a-bag cookie, it's about the easiest recipe for cookies that I've ever come across:

"1 1/2 cups Bob's Red Mill Teff Flour

"1/2 tsp. Sea Salt

"1/2 cup Maple Syrup

"1/2 cup Canola Oil

"1 tsp. Vanilla

"1 cup peanut butter

"Preheat oven to 350 degrees. Set aside an ungreased cookie sheet. In a large bowl combine dry ingredients, set aside. In a food processor blend syrup, oil, vanilla and peanut butter. Add the wet ingredients to the dry ingredients; blend well. Shape dough into walnut size balls. Place on cookie sheet and flatten gently with the tines of a fork. Bake about 13-15 minutes. Cool on wire rack. Yield: 24 cookies." Mmmm, good!

Since canola oil has a laxative effect on many celiacs, you may want to substitute another cooking oil. I'd suggest an all-natural peanut butter, and use real maple syrup if within your budget. (Most breakfast syrups--like Eggo, which contains no gluten-containing ingredients--use corn oil, which I understand is out of bounds for you!)

On the other hand, the cookies recipe-in-a-bag made by Bob's Red Mill is about the only product by that manufacturer in which I'm a little disappointed--the reason being that it contains more sugar than agrees with my taste buds.

[Paul Jackson]

"Just to clarify, while it is true that this intestinal epithelium-associated enzyme in vivo is capable of digesting to some extent gliadin peptides . . . " ( Open Original Shared Link boldface mine. )

If one has already to decided to the only-available meal that, despite taking all precautions, is risky, the question remains whether to eat the meal with or without such an enyzme pill. To answer this question, one need merely weigh the potential harm--which at that juncture is nothing--against the potential benefit--which is that it's "capable of digesting to some extent gliadin peptides." Still confused, tom?

[jerseyangel]

Tom is NOT confused.....he was simply showing us the results of the study, which I found interesting and not surprising.

[tom]

--which is that it's "capable of digesting to some extent gliadin peptides." Still confused, tom?

"Working to some extent" is far from equivalent to "digesting to some extent" when the obvious goal is "protecting to some extent".

There's a glutenease thread where you can present your p.o.v. in any manner you desire.

Please.

[ShayFL]

Im gonna steer this back to Will's issue.

How bout if you find yourself stuck at a restaurant like Denny's you order some "whole fruit". Most places have bananas, apples, etc. whole. Bananas are great as they do not even need to be washed. Eggs are another great choice if you tolerate them. If you can do dairy ask for a banana and a glass of milk. They are also likely to have some plain yogurt which you could add the fruit and some honey to.

If you tolerate peanuts, ask if they have peanut butter and then ask to see the container so you can read the ingredients. This would work with the fruit too.

And hey...Denny's actually has a gluten free list:

Denny's

Website: www.dennys.com

Phone: 864-597-7396

Email:

Notes: Please be aware that vendors and product formulations may change. If necessary, product labels are available. Nutritional/Allergin information located at: Open Original Shared Link The list contains most of the gluten free menu items as well as some of the non-gluten free items.

The following items are considered gluten free based on the information provided by the restaurant.

Food Gluten Free?

French Fries Yes

Hashed Browns Yes

Mashed Potatoes No

Seasoned Fries No

Buffalo Sauce Yes

Cranberry Sauce Yes

Au Jus No

BBQ Sauce No

Cocktail Sauce No

Heinz 57 Sauce No

Marinara Sauce Yes

Sweet Hickery Spread No

Tartar Sauce Yes

Scampi Yes

Sausage Crumbles Yes

Sausage Patties Yes

Sausage Links No

Broccoli Chedder Soup Yes

Vegetable Beef Soup No

Clam Chowder No

Sour Cream Yes

Strawberries Yes

Maple Syrup, Diet Yes

Tortilla Chips Yes

Sliced & Shaved Turkey Yes

Talapia Yes

Whipped Topping Yes

Ketchup Yes

Applesauce Yes

Bacon Strips Yes

Banana Split Yes

Beef Patty Yes

Roast Beef Slices No

Hot Chocolate Yes

Apple Juice Yes

Orange Juice Yes

Blueberry topping Yes

Butter Yes

American Processed Cheese (sliced) Yes

Shredded Cheese Yes

Cottage Cheese Yes

Cream Cheese Yes

Parmesan Cheese Yes

Swiss Cheese Yes

Scrambles Eggs Yes

Egg Beaters Yes

Sliced Ham Yes

Shaved ham Yes

Chocolate Ice Cream Yes

Butter Pecan Ice Cream No

Mint Chocolate Chip Ice Cream Yes

Strawberry Ice Cream Yes

Vanilla Ice Cream Yes

2% milk Yes

Buttermilk No

Mustard Yes

Nut Topping Yes

Pickles Slices Yes

Baked Potato Yes

[Paul Jackson]

One last word from me and, I anticipate, one more chuckle by tom. I believe that as responsibility, self-reliant human beings, each of us should take all reasonable precautions to protect our good health and take all steps to promote it. This responsibility includes discussing contingency plans when things don't go our way.

In 1972, things really didn't go the way people wanted when a plane crashed in the South American mountains known as the Andes. The crash occurred at a remote location that left the survivors stranded and, despite all precautions, facing imminent death by starvation. (Piers Paul Read, Alive: The Story of the Andes Survivors (Lippincott, 1974); A. W. Brian Simpson, Cannibalism and the Common Law: The Story of the Tragic Last Voyage of 'Mignonette' and the Strange Legal Proceedings to Which It Gave Rise (Chicago: Univ. of Chicago Press, 1984.)

Well, I'm not going to discuss the details about the survivors' cannibalism. But I'd like to say that in the predicament in which they found themselves, I believe that they did what they had to do, and that they were morally justified in doing it. The only point I'm making here is that, even though holding this belief, I'm not a cannibal and would hope never to be in a predicament like the survivors of that plane crash. Whatever you might do if--heaven forbid--you were in their shoes, I don't think it would be fair to say that because I have this belief about what they did in their predicament, I 'promote' cannibalism. At any rate, I wish everyone good health and joyful living.

Over and out (that's trucker talk for over to you all, and I'm off this topic).

[ShayFL]

I notice that the banana splits are gluten free.