This Is Ridiculous, Everything Has Gluten In It.

[groogle]

I've been feeing really bad for about a year, now I have finally been dianosed with celiac disease.

I dont understand this I was eating gluten foods for all the prior 18 years of my life, how can I suddenly be allergic to gluten.

I'm a young man, I can't eat gluten free stuff only, I don't even know what has gluten in it or not and it seems pretty much everything. I hate food shopping too. If it was just bread I couldn't eat I guess I could handle that but glutens in everything.....

Is there any other way to get back to the way I was before. I really dont wanna learn about this disease and be sick.

This diet is completely unworkably for me, does that mean I'm completely screwed?

Thanks for any help,

Greg

[KaitiUSA]

First, welcome to the board. Well at first it can take time to get used to. I thought I couldn'tdo it at first and it's understandable. I was healthy all growing up..then when I got mono at 15 I got all these symptoms and got my diagnosis sometime later and now avoiding gluten at 18 now,I am healthy again. You see with celiac you do not have to have symptoms so you could have had it long before you know but still have been causing damage.

The stats are really bad for people that do not follow the diet though. 40-100 times more likely for cancer, diabetes, osteoporosis, kidney/liver/gallbladder/pancreas failure or disease and other life threatening and disabling things. It also takes an average of 10 years of the human life.

Gluten is not worth it. We can have good bread and good things,its just a matter of finding the things you like. It takes some time though because gluten is not only hidden in foods but in things like shampoos and soaps as well.

There are a list of companies that will not hide anything. On the labels in the following brands it will say wheat,rye,barley,oats-it will not hide gluten under anything:

Aunt Nelly’s

Balance

Baskin Robbins

Ben&Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Dove

Edy’s

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman’s

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Snack

Kraft

Libby’s

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely’s

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain’s

These brands will especially help you out at especially at first because all you have to look for is wheat,rye,barley, oats or they will be safe. Also, look at the safe and forbidden list on this site if you have not already so you can get an idea-if you haven't already https://www.celiac.com/st_main.html?p_catid=12

You can find out alot about good products on this board and if you have any questions just ask.

Your not screwed, just takes effort so don't throw in the towel just yet..hang in there

[Guest nini]

When I was first diagnosed, right after I left the Dr.s office, I walked into a local health food store that the Dr. sent me to... I was walking around the aisles and it appeared that everything had the dreaded Gluten (what the heck was it anyway?) and I was bawling my eyes out. The grocery manager asked me what was wrong and after I told her she offered me a cookie! (gluten-free of course) it was delicious. She then walked me around and showed me what I could eat. It's not that difficult once you get the hang of it.

No, you will not ever go back to being able to eat whatever and not pay the consequences, but you will eat healthier than most.

Try looking at what you CAN have, not what you can't. Many fast food restaurants have gluten-free menus on their websites, you can printout copies and safely order most fast food... Just takes a little research, but fortunately on this site most of the research has been done and you can find lots of links.

You Can have steak if you ask the restaurant to grill it on a clean grill and only use salt and pepper, and you can find great gluten-free sauces that you might actually like. Most restaurants will have Lea & Perrins Worcestire Sauce you can use... You can have salads (without croutons and you will learn which salad dressings are ok), Potatoes, Rice, Fresh Vegetables and Fruit as well... Grilled or baked Fish or chicken too... (same rules about seasoning apply)

There are a lot of "normal" snacks and candies that are gluten free, this info too is available all over this website.

[jenvan]

Stick with it Greg. At this point there is no know 'cure' for Celiac. And be aware, b/c there are some individuals out there who will give you false information saying they can cure it. Once you get over the initial hump, it becomes second nature--knowing what to and not to eat. You will get there... Ask away in the meantime!

[rmmadden]

Greg,

I completely understand your frustration. I went nearly 37-years of eating whatever I wanted before all-of-a-sudden I got sick last August and was diagnosed with celiac disease. I had no prior symptoms and it was a shock to change my lifestyle that fast.

The best advice I can offer is to read, read & read. Go to your local library and get a few books out on Celiac (including cookbooks). Then take a trip to your local grocery store & health food store. You will see that there are plenty of things you can eat that are gluten-free (Cozy Shack Rice Pudding is awesome) and ultimately better for you.

It does seem very overwhelming at first but soon it will be second nature and you'll do fine.

Best Of Luck!

Cleveland Bob

[jenvan]

Bob had a good idea on getting a book. Probably the most recommended around here is 'Wheat Free, Worry Free' by Danna Korn. You can buy/order it at most bookstores. I got mine off of Amazon...

[groogle]

Wow, thank you all for your support, info and kind words of encouragement.

I'm really quite mixed up about this whole thing. I'm in one way relieved to have a name for my symtoms which I've spent a few thousand in the past year on trying different supplements and other things just trying to fix it. I really dislike going to the doctor aswell.

Now my legs are feeling really tired and ache really bad. I sleep like really long aswell which I used not to have to do. I havent told any family yet, they'll probaby think its just think its another one of my theories about why I feel so bad..... I've had a few ...like parasites, intestinal candida, etc. Maybe they'll believe me because they knew I had been seeing the doctor but I doubt the word celiac means anything to them.

I can't believe I' have to worry about bread crumbs in the butter in a toaster, thats crazy, and after a hard day of working and avoiding gluten I cant even have a beer or guiness. No mayonayse! thats tragic.

I only eat a 1/3 of what I used to, I wish I didnt have to eat at all because after eating is usually when I feel the worst. The other day I saw my sisters friend, she said I should come round and have dinner one day, I thought she was just being friendly, but yesterday my sister told me she was talking with her and she said how I'd lost weight and was worried. That kind of thing really gets to me, because I have only moved out 6 months ago and it looks like I cant take care of myself. I always find this so patronizing even though they're trying to be nice, I can't think what it'll be like if I tell people I have celiacs, gossip travels fast round here. I'll have all kinds of people offering me hand outs like I'm a helpless old lady.

It seems better regarding gluten-free over there in the US.... i'm in Ireland (that little green dot across straight across the atlantic) we don't seem to have much of gluten free industry here, or like places you can shop online. I'll keep checking it out though. Seems strange since the doctor told me 1 in 300 people have it here, maybe he was just trying to make me feel better.

I wonder what will become of me, I dont like those odds about 40-100 times more likely to develop cancer. Atleast if I had cancer I would have a chance to beat it and make a full recovery, and i wouldn't need to explain it to everyone, this is a life sentence so it seems. Maybe I'm just feeling sorry for myself, well yeah I am. I have another appointment for next week with my doctor and he says he'll have some information for me to read, this week I'm suppose to reflect on it and realise that its not the end of the line.

Sorry I don't mean go on, I know everyone here is in the same boat. I'm going to clear out any food that might have gluten in it. I better learn to cook better than I do now too, unless I want to fade away.

thank you all again for your support, Bob, Jen, Nini and any others who have posted.

I have a couple of questions,

what veg can I not eat, if any?

Right now I've have stomach(lower stomach S/I) cramps, tiredness, body pains(legs,arms, feet mostly), gas, persistant diarrea, which sorry to make you sick, but often smells disgusting, nothing like before I got sick with this disease. Thats a real nasty symtom that I'm told many people experience with celiac disease.

when I start the gluten free diet, how long does it usually take to feel better?

Best wishes

[Jnkmnky]

There are things in life much worse than celiac disease. Some of those things can happen to you if you don't adhere to a gluten free diet. As Kaiti pointed out, there are many diseases thought to be associated with celiac disease. If you maintain the gluten free diet, you lessen the possibility of getting those additional problems.

Having said that...here are some gluten free foods that are very similar to regular foods:

Tacos- Old el Paso taco sauce is gluten free. Use it instead of a mix.

Chili- Make your own with beans, etc read all labels (refer to safe forbidden list)

Thai Kichen- Usually in "regular" shopping marts. Total convenience food- great for a guy who's not into cooking!

Post Fruity and Cocoa Pebbles! They are gluten free!

Kraft Velveeta cheese!! It's gluten free! ** You need to get a gluten free pasta. Most everyone here would steer you towards TINKYADA PASTAS. You can find it in a local healthfood store. If not, there's a link here at Celiac.com for Pam's Celiac Kitchen. It's usually on the left side of the screen and it has a little bunny running...They have Tinkyada pastas for 2.99 a bag. You can then make spaghetti, mac and cheese, soups-

You have on line access. Use it. Go to the web sites of the chip companies you like. Look there for the products that are gluten free. The food companies are very savvy when it comes to gluten and most web sites list gluten free products. If you get confused or lost or don't want to make much of an effort, drop them a quick email saying you need the list of their gluten free products and they will email you a link. In the meantime....Lays STAXX are gluten free. They're a lot like Pringles! Lots of Tortillas are gluten free. Make nachos!!

Oscar mayer Hot dogs are gluten free... so is their bologna! You will need to read the labels at the deli counter for your cold cuts. Ask deli clerk to wipe down the slicer before cutting your order.

I recommend Kinnikinnick brand breads. www.kinnikinnick.com My family likes the white tapioca bread. It's good. You need to keep your breads frozen. Lightly toast or warm up to use. I order 10+ loaves at a time. You may have an excellent health food store near you so you won't have to order on line. I don't.

Try to listen to advice given here about foods. Some stuff is truely terrible...and yet, still so expensive! So wasting money on disgusting food will add to your misery. Avoid additional hopelessness by getting help here.

Corn tortillas. Make bacon, egg and cheese burritos for breakfast. I suggest you warm the tortilla up with a little pat of butter on each side to give it a better consistencey. It will be very crumbly if you don't.

You will need to read a lot of labels. You will get used to this. You will also find the foods you like to eat. This will become second nature to you and not feel so overwhelming.

Oh, and one thing that's surprising to learn.... the shape and size of a food matters.... For instance, Snickers (regular sized) is gluten free....Snickers (mini and popables) have gluten.

Milky Ways have gluten.....Peanut butter cups are gluten free-Malt means gluten. Breyers has a lot of Ice creams that are gluten free.

[Jnkmnky]

You can have mayo. Tunafish, chicken salad...until you find bread you like, put the tuna and chicken salad on a bed of salad greens.

What else do you like to eat that you're wondering about? Just ask. Someone here will tell you what you can replace it with...or if it's gluten free and you can keep it....

[VegasCeliacBuckeye]

My Irish friend (and celiac brother)

Here is the Irsish's Coeliac's webpage --

I see they have a gluten free food portion of the site...

Open Original Shared Link

Hope this helps...

[Jnkmnky]

Do you have an Outback Steakhouse near you? They have a gluten free menu. You need to ask for it or download the menu yourself and bring it with you. They're awesome. It also helps to get out, validate your new self, proclaim your new status and eat a great big steak made special just for you.

[groogle]

Thanks for the food advice JM, I have heard of half the stuff you mentioned, theres a few health stores around here, good news about the snickers bars strange about the mini/bitsize ones have gluten. Only got the diagnosis yesterday so I'm a bit depressed, but the idea of being able to cure my symtoms, even if it means having a strict diet is good news....

now...hopefully the King size Snickers are gluten free cuz I'm going to get one!

Later,

G

[Guest gliX]

hey groogle,

celiac disease isn't that bad. At first I was upset about the diet, and now after two years on the diet, it's second nature. After you learn what foods are gluten free, it won't be a huge problem. Here's some foods/items that I eat that are gluten free:

most sodas

regular hershey bars

regular m&m's

mcdonalds fries/burger (no bun)

grits

trader joe's waffles (tastes just like eggo)

trix yogurt

gluten-free spaghetti (tastes just like the real stuff)

etc..

And mayo is also gluten free.

[frenchiemama]

I know it seems terrible at first, but trust us - you will get used to it and you will feel better.

I wish I could help more about what to buy, but I just don't know what brands are available in Ireland.

I know what you mean about not being able to have a beer (at a time like this you really want one, too!), but you can have hard cider as long as all the ingredients are gluten-free. In the US we have a brand of hard cider called Woodchuck that is gluten-free and really is pretty good.

[celiachap]

You can still have whiskey - when I crossed the pond for a tour of Ireland I brought back two bottles (Jameson & Bushmill).

I never liked beer much, anyway, so it was not a sacrifice to "stop" drinking it. I do still like to wear my black Guinnes T-shirts, which are entirely printed in the Irish language.

There will no doubt be a solution for Celiac disease, eventually. Scientists are now working on enzymes that will allow gluten digestion in Celiacs. I have a bottle of enzyme pills, trial size, that are supposed to help gluten digestion in the event of accidental, or intentional, exposure. The company that makes them is Kirkman Labs. I haven't tried them yet.

My new "favorite" candy is Milky Way Midnight - this one is gluten-free (the standard MW is not).

I wish that I'd known that I had this years ago - believe me, it's better this way for you. The teeth problems alone almost killed me.

[Guest gliX]

Hey celiachap, just curious, what are the names of those enzymes?

[mytummyhurts]

I find it interesting that you are from Ireland because we had a post going a while back where someone asked what people's heritage is and almost everyone who replied had at least a little bit of Irish heritage. I've also read that this is more common for Irish people and I believe that it is thought to be because the Irish didn't have gluten in their diets until more recently than other places. So I thought about this and I wondered if so many Americans with Irish heritage have this than why aren't there any people who actually live in Ireland on this board? We've had people from France, England, South Africa and Korea, but I had at least never seen somebody who said they were from Ireland. So, anyways, welcome. I'm glad you found this board. This is an absolutely wonderful place to come for advice, comfort, etc when you need it.

I would like to point out that being from a different country than the US (which most of us are) that you will need to be careful about what people say is "safe." Because a lot of companies don't sell exactly the same thing here as they do over there. And of course, we probably don't even have the exact same companies. But people here are awesome about providing ideas. Just let us know what you are wondering about.

As for your family, friends, etc. I obviously don't know them and everyone is different. But when I told my family and co-workers, everyone was really supportive and interested in this disease. I recommend studying up on it so you can give them all the facts and of course, for your own good. Many of us believe that the more people out there who know about this the better for us. I've read that Europe is actually easier for people with celiac disease than the US, because it is more commonly diagnosed over there.

Good luck! Hang in there and feel free to ask us anything. We don't really get grossed out about much, because we've almost all been there!

[celiachap]

Hey celiachap, just curious, what are the names of those enzymes?

<{POST_SNAPBACK}>

I posted this the other day:

It’s not claimed to be a “cure”, but they say that it can help digest gluten in cases of accidental ingestion. Peptidase is the same protein that they are testing at Stanford, and at Oslo, Norway:

Open Original Shared Link

It seems like an excellent company. From the product description:

WHAT IS DPP-IV?

Dipeptidyl peptidase (DPP-IV) is a protein that has multiple functions in the body. It is known under different names depending on where it is found. When DPP-IV is on the surface of the T-cell (lymphocyte), it is called CD26, and supports immune function. When this enzyme is found on and imbedded on the epithelial brush boarder mucosal membrane of the intestinal tract lining it is known as DPP-IV. The importance of DPP-IV is that it has primary function in breaking down casein and side chain activity in breaking down gluten. Thus the use of a DPP-IV containing enzyme will support the digestion of casein-containing milk products as well as the protein in gluten-containing grains

WHEN TO UTILIZE

The DPP-IV enzyme provides support of digestion when there are hidden, accidental or intended exposures to casein and gluten in the diet. Those following a gluten-free/CF diet as well as those who have accidental or intended exposures to gluten and casein-containing foods can use this supplement.

Open Original Shared Link

[mouse]

Don't give up on the beer. Check your local health food store and the liquor store. I heard on this site about Bards Tale beer and yesterday I was in Whole Foods and they are checking into acquiring it. They told me today (wish it had been yesterday, so I could have tried some) that they carry a Belgium gluten-free beer called Sarahs? Not sure if I heard that right, but maybe someone on this site would know. I just tried the Kinnikinnick white tapioca bread and it was FANTASTIC (Sorry celiac3270). I have about 15 bread mixes in my freezer and just did not want to make any. Heard about this bread on this site and now have to find someone to give all the mixes away to - sure my doctor will know of someone. This bread was better then my mixes and I doctored them up trying to get a REAL bread flavor. Once you gluten-free free your home and buy what you can, it really is easy. I make Brownies that Normal people love and can't tell the difference. Good Luck and Good Health.

Armetta

[BabySnooks]

You can have mayo.    Tunafish, chicken salad...until you find bread you like, put the tuna and chicken salad on a bed of salad greens. 

What else do you like to eat that you're wondering about?  Just ask.  Someone here will tell you what you can replace it with...or if it's gluten free and you can keep it....

<{POST_SNAPBACK}>

I have a double problem....today is the first day of my Celiac gluten-free diet and I was also diagnosed with diabetes in May. So, I am not allowed many of the gluten-free foods either because of the sugar.

I have spent this entire day at the computer researching the gluten-free way of life. I am getting conflicting information from different sources. I read a Kraft Gluten-free list that said Miracle Whip Lite is gluten-free. Yet the label says it contains soybean oil, and I thought that was forbidden. Can you help me? By the way, I dislike mayo.

[Jnkmnky]

Soybean oil and soy are gluten free. I don't like soy. I think it's bad for the body. I've recently eliminated virtually.... virtually all soy. It's way more difficult to rid your fridge and pantry of soy than to rid your world of gluten.

Here is a link to a site about soy.

Open Original Shared Link

It's not the only site out there pointing out the ill effects of soy on the body, just the one I have locked into my favorites for quick recall. If you want further proof about soy being bad for you, google it. Look for the good and the bad and make a decision for yourself.

[BabySnooks]

Soybean oil and soy are gluten free.  I don't like soy.  I think it's bad for the body.  I've recently eliminated virtually.... virtually all soy.  It's way more difficult to rid your fridge and pantry of soy than to rid your world of gluten. 

Here is a link to a site about soy.

Open Original Shared Link

It's not the only site out there pointing out the ill effects of soy on the body, just the one I have locked into my favorites for quick recall.  If you want further proof about soy being bad for you, google it.  Look for the good and the bad and make a decision for yourself. 

<{POST_SNAPBACK}>

Thank you jnkmnky for your candid thoughts about soy.

[BabySnooks]

You can have mayo.    Tunafish, chicken salad...until you find bread you like, put the tuna and chicken salad on a bed of salad greens. 

What else do you like to eat that you're wondering about?  Just ask.  Someone here will tell you what you can replace it with...or if it's gluten free and you can keep it....

<{POST_SNAPBACK}>

Hi,

Just thought of one more item I can't find on my list of "good" and "bad" foods. I see mustard flour on labels. Is it gluten-free?

[Pegster]

My understanding is that 1 in 133 have Celiac (whether it has been diagnosed or not). I understand your frustration. It does seem like an impossible diet at first. You are actually lucky to live in Europe. Restaurants seem to be more accomodating than in the U.S. As for bread products, I order from www.kinnikinnick.com. I really love their muffins and donuts for a treat. All vegetables and fruits are gluten free in their natural form. Plain meat (steak, chops, etc) will be gluten free. Potatoes are safe (boiled, baked, fried-- just not breaded or in a sauce thickened with flour) I have been gluten free for over a year. I have been able to travel all oveer Europe and the U.S. without difficulty. By the way, your parents may very well be celiacs, so you may as well tell them as soon as possible. Good Luck!

[Jnkmnky]

Open Original Shared Link

At the bottom of this link you'll see where it says Mustard flour is gluten free.