Shocked And Needs Help

[Shotzy1313]

I am a 22 year old male and I have had a hard time in life being mistaken for a 12 year old. (exaggerated) lol. I weigh about 138 pounds.

About 2 weeks ago I went to the doctor for some dry skin under my eyes that I have had for about a year. After talking to the doctor I asked her about some other symptoms I have been having. I told her I have been lifting weights since last December and trying to bulk up and gain weight. I have gained about 3 pounds since like my younger years of high school which was like 6-7 years ago. I have also had some anxiety problems as of lately that I never use to have. The doctor did blood work and I came back positive with celiac disease and I have to go have a biopsy done in a few weeks.

I am completely freaked out now after doing my research of this disease. I am the kind of guy who loves beer and to party and due to some food allergies like the only thing I can eat is wheat and now I can't. I am allergic to chicken, turkey, tuna, (confirmed) and maybe beans (not confirmed but pretty sure). These are all major sources of protein and if I can't eat wheat then I don

[Guest Doll]

I am a 22 year old male and I have had a hard time in life being mistaken for a 12 year old. (exaggerated) lol. I weigh about 138 pounds.

About 2 weeks ago I went to the doctor for some dry skin under my eyes that I have had for about a year. After talking to the doctor I asked her about some other symptoms I have been having. I told her I have been lifting weights since last December and trying to bulk up and gain weight. I have gained about 3 pounds since like my younger years of high school which was like 6-7 years ago. I have also had some anxiety problems as of lately that I never use to have. The doctor did blood work and I came back positive with celiac disease and I have to go have a biopsy done in a few weeks.

I am completely freaked out now after doing my research of this disease. I am the kind of guy who loves beer and to party and due to some food allergies like the only thing I can eat is wheat and now I can't. I am allergic to chicken, turkey, tuna, (confirmed) and maybe beans (not confirmed but pretty sure). These are all major sources of protein and if I can't eat wheat then I don

[Ridgewalker]

How strict do you have to be on a gluten free diet?

So far the gluten free foods I have bought don

[kbtoyssni]

How strict do you have to be on a gluten free diet?

-Very strict. Like no cheating EVER. I think everyone else covered this. I know this seems very, very overwhelming at first, but it will get better.

So far the gluten free foods I have bought don

[Darn210]

Just in case you don't know . . . you need to stay on gluten until your biopsy.

FYI, gluten free bread tastes better if it is toasted. It is also better (IMO) if it is homemade. Even the mixes (with a bread machine if that will work for you) are better. But right now . . . see my first note - you need to stay on gluten. Try the Tinkyada brand of pasta. It tastes great (my family can't tell the difference) and doesn't fall apart like the other rice pastas that I've tried. We use Pamela's baking and pancake mix for pancakes (it's all about the syrup, anyway ).

Also, you didn't tell us anything about your living conditions. Do you live alone or have a roomate? Shared housing has it's own issues. You will need your own butter, peanut butter, cream cheese, etc. so they don't contaminate the jar/container with their bread crumbs.

[Shotzy1313]

Just in case you don't know . . . you need to stay on gluten until your biopsy.

Wow, thats a great point that I never thought of. Here I am trying to go gluten free and I havnt had my biopsy yet. lol I guess I just cant wait to see some results. At least ill be able to drink some Miller Lite as opposed to Rebridge for holloween this year. Redbridge isnt bad though.

BTW thanks for everyones post so far, they have all been very informative and have made me feel better. I am so glad I came accross this forum tonight.

[NoGluGirl]

Dear Shotzy,

Do not worry! After the biopsy, there are things you can eat! Wal-Mart has a ton of gluten-free foods that are labeled!

Not being able to eat chicken, turkey, beans, or tuna is tough. However, there are other options out there. I have a master list I put together, but due to your situation being a bit different, I think I should make another smaller list for you to start. If you react to all beans, you may want to avoid other legumes, which include peanuts and soy. You make that call.

Many Celiacs do not handle dairy. Some are sensitive to casein, a protein similar to gluten. Others just cannot tolerate the lactose. That is why it is often encouraged to avoid dairy in the beginning. I have found lactose is my trouble, so I can have cheese and milk chocolate candies. Yogurt and Pudding make me as sick as gluten, though.

Wal-Mart's Great Value Canned Fruits and Vegetables

Lay's Stax Potato Chips

Mission Tortilla Chips

Heinz Ketchup

Lea & Perrins (all products)

Great Value Soy Sauce or La Choy Soy Sauce

Kraft Salad Dressings (Kraft clearly labels any gluten when present, so if you do not see it on the label, it is not there!)

Fresh Fruit and Vegetables

Dora The Explorer Cinnamon Stars

Cocoa Pebbles

Fruity Pebbles

Lactaid Milk or Great Value Soy Milk

Coke (Diet, Vanilla, Caffeine-Free, and Classic)

Aquafina, Dasani, and Nestle Bottled Waters

Gatorade Thirst Quenchers

Jif Peanut Butter (all varieties)

Great Value Lunchmeats (many are labeled gluten-free, look near the copyright)

Redbridge Beer

3 Musketeers Bars

ButterFinger

Reese's PeanutButter Cups

Skittles

Lean Ground Beef, Beef Steak, Stew Meat

Lamb Chops, ground

Pork Chops (Tyson Natural)

Mori-Nu Silken Tofus

Birdseye Steam Fresh Vegetables

Velveeta

DeBoles Pasta

Holland House Sherry

If you can tolerate other forms of fish or seafood, like salmon and shrimp, add them in there for protein, too!

There is also a concern about household products. Here are some basic items that are safe:

Dawn Dish Soaps (Includes Power Disolver)

Cascade Dishwashing Detergent

Electrasol Dishwashing Detergent with the Powerball

SoftSoap Hand Soaps

All Laundry Detergent

Hygeine and Personal Care Items:

Biotene Mouthwash

Crest Whitening Expressions Toothpastes

Dove Soaps, Shampoos, Conditioners, Styling Aids, and Lotions (Clearly labels gluten if present)

Suave Soaps, Shampoos, Styling Aids, and Lotions (Clearly labels gluten when present)

I hope this helps!

Sincerely,

NoGluGirl

P.S. Biopsies are not painful at all! You are so drugged, you have no idea!

[hathor]

Others have given some excellent advice, so I won't repeat what they've said. But I will address your concern about protein.

I think we as a culture have this obsession with protein. But actually people usually get way more than they need. (Current RDA is based on study results, multiplied by 2 and a margin added, yielding 44 grams for women and 56 grams for men, if I am remembering correctly. The US average consumption is around 110 grams.) Excess protein is actually bad for you. Here is a link that shows the protein content of a number of foods, broken down by amino acids. You can see that you can get sufficient protein without animal products or even beans or soy. It is actually hard to be protein deficient, assuming you are getting enough calories and eating regular food as opposed to colas & fruit rollups or something.

Open Original Shared Link

(in particular, read the December '03 article)

The only diet where insufficient protein may be a concern, according to a chart I saw in a lecture once, is fruitatarian (only fruit).

I hope this puts your mind at ease. You aren't going to get a protein deficiency. Just find out what foods you can and can't eat and go from there.

I've put on some muscle in recent months with exercise and a gluten-free plant-based diet. And I'm a menopausal woman. Eating protein doesn't give you muscles; that comes from exercise -- and obviously, having a gut that can absorb nutrients (I had problems building muscle before going gluten-free). Even heavy training doesn't add that much to your protein needs (I've heard 10%), and a decent diet will give you that and probably more. Remember those US RDAs have all that margin built in, too -- the European figure is lower.

I've heard other folks say that simply going gluten-free, and not even exercising, caused them to start putting on muscle, too.

-------------------------------------------------------------------------------------------------------------------

I accept that many products designated "gluten-free" aren't that great. You have to ask for recommendations as far as particular foods are concerned and then try things yourself, since tastes do vary.

[gfgypsyqueen]

Just wanted to add a few things...

First, keep eating gluten until your biopsy. You don't want to go through the head ache of a biopsy and have a sort of healed intestine which will make it harder t find the damaged villi.

Second, beer may be out, but you can buy and order gluten-free beers. Check the local health food stores. Lee Roy Selmans is a sports bar that sells Red Bridge gluten-free beer (and they have gluten-free wings and a great gluten-free menu!). Love the place!! Personally, I like rum, vodka, and tequilla. Use the call brands so you know exactly what you are getting. Rum and coke is a pretty standard drink that bars can't really screw up. Juice at bars can be more of a challenge to be sure it is gluten-free.

Good luck on your biopsy and hope mom is doing better.

[loraleena]

Try nuts, eggs, fish and beef for protien. I would recomend organic beef and eggs. There are lots of awesome products out there.

Do you have a Whole Foods or Trader Joe's near you. Here are some items I recomend

Breads: Food For Life Brown Rice Wraps (great for burritos) Make sure you toast them before wrapping. Against the Grain breads. They are in whole Food on the east coast at least. Absolutely amazing. Tastes like real baguettes and rolls.

Pizza: Glutino makes a great frozen pizza. Also make your own with Whole Foods Gluten free bakehouse pizza crust.

Pancakes and Waffles: Lifestream is good and Traders has great gluten free pancakes.

Pasta - Quinoa and corn pasta is awesome tastes like real thing. The rice pasta mentioned in other posts is great also.

Desserts: Pamelas cookies are good. Nanas no's are good. There are lots of ice creams you can have - I would research this. Most Breyers all naturals, Stoneyfield Farms and Haagen Daz are ok. Make sure no cookie,cakes in them.

If you go on line and type in gluten free food lists you will come up with sites that list safe foods.

Good Luck!!

[ShadowSwallow]

How strict do you have to be on a gluten free diet?

Very, very, very strict. As someone here said before, going 90% gluten free does not get rid of 90% of your symptoms. It's an all-or-nothing situation, unfortunately.

So far the gluten free foods I have bought don

[Guest thatchickali]

Okay well, I have extreme anxiety problems. I am not yet healed and neither is my anxiety but many people have told me their anxiety and depression got better with healing.

About the dietitan, I have wasted my money on 4 so far. All they have known is how to be gluten free. They didn't know what to tell me about other possible intolerances that I may have and they all just gave me the same leaflets on Celiac Disease.

I don't know what city you are in but you need to find someone very familliar with it, and talk with them on the phone and tell them you want to know if they can really help you. Trust me they will tell you. I've called 3 others that say they really can't help me and my best bet is this forum because I need to talk to people with experience.

Just be careful because they will take your money and leave you with no suggestions.

Best of luck! And if you're worried about cutting out beer, it will make you a much healthier person in the end!

[gfpaperdoll]

I would forget the dietician. Get the book Super Foods - ignore the parts about wheat, rye, barley & oats. research on the gluten free forums & eat plenty of plain fresh food - meat, fruit, veggies, nuts & seafood is a great protein.

this is a genetic illness. I would make sure that your mom gets tested.

[Phyllis28]

Whole Foods and Wild Oats have a good selection of Gluten Free Products. Links to the websites are below:

www.wholefoods.com

www.wildoats.com

Both site have store locators.

The customer service desk at Whole Foods has a Gluten Free Product list if you ask.

As others have said you will need to read all the ingredients, especially since you have other food allergies.

[mamaw]

Hello & welcome

Everyone before my post has given you excellent advise.. You can learn sooo much right here...

I see you are from Ohio. If you can make it Nov.3,07, The Columbus Children's Hospital is having their 20th celiac conference. You must pre-register & the fee is $35.oo. It is a big event for many speakers & vendors sampling & selling some of the best available gluten free foods & goodies. It is a good place to meet & ask questions.

Being gluten free becomes second nature after a trial & error period . do not cheat -because when you cheat you cheat yourself out of health..... & it is not worth it.

mamaw

[jaayimee]

Just wanted to add a few things...

First, keep eating gluten until your biopsy. You don't want to go through the head ache of a biopsy and have a sort of healed intestine which will make it harder t find the damaged villi.

If you doctor told you to go gluten free right away then I would check with them about waiting to start while waiting for the biopsy. My GI told me to do it immediatly even though my biopsy is not for another 3 or 4 weeks. I called them to double check and they said yes go gluten-free immediatly. Probably to do with how sick I am but I would double check it with the doctor. I've had the scope into the stomach twice before and do not even remember the whole day let alone the test so you will be safe there. Sorry about your mom and hope she recovers well.

Jamie

[Shotzy1313]

Thanks Mamaw and Jamie and the rest of you, I am continuing to read these forums, and check here for more advice. My doctor said to continue eating gluten till the biopsy so I am taking the time to eat a lot of my favorite foods for the last time. I will have to look into that thing in Columbus I go up there all the time so im familiar with the city. My moms slowly recovering, she

[NoGluGirl]

Dear Shotzy,

You will make it! We will all be anxious to hear about your test results once they come in. Be sure to let us know how they turn out! Meanwhile, eating your favorite foods is a good idea. However, going gluten-free is not a death sentence for your taste buds. You would be surprised how good some of the stuff is!

Tonight, I had Bell and Evans Chicken Tenders, and they are like the kind you get at the restaurant, but without the stuff that makes you sick! Katoos are just like oreos, and they are delicious! My brother sent me some! I was ecstatic! It was gluten-free hog heaven! Do not worry, we will have you covered with pizza and all kinds of other things.

I hope your mother recovers quickly. It can be a long road. Just be sure to take care of yourself first. Otherwise, you cannot help anyone else. We all send our prayers and good energy to you and your family!

Sincerely,

NoGluGirl

[jizzzzie]

Shotzy, if you are actually a Celiac, meaning it's not just a gluten sensitivity, and you actually have full on 100% Celiac Disease like me, then here are some rules.

DO. NOT. EAT. GLUTEN. (Well, duh, right?!) For me, I can't even have a quarter of what can fit under a baby's pinkie nail. And some people even react when they touch gluten.

-IF YOU HAVE HAD TROUBLE WITH BREAD AND BAGELS AND SUCH, TRY UDI'S BREAD AND BAGELS! (I think white plain are the best) They taste EXACTLY like regular bread, if not better. And you can have them cold, and they still taste good, which is amazing.

-Bionature Pasta, (I don't know if you can eat it, I used to be able to but I am on soy restriction as well as dairy and I can't eat that now, but when I did, delish.)

-Kinnikinnick Sandwich cookies

-Glow Cookies

-Bard's Beer

-Glutino pretzels.

-alot of chips like lays are gluten-free

Just to name a few. Hope I helped! (:

~Julia

[jizzzzie]

oh an also, biopsys don't hurt. I had one. Fell asleep. Woke up. I was dizzy and groggy, but not in pain in the slightest (except a sore throat but that just might be me.)

[GFshay]

I totally sympathize. I'm only a bit over a week of being gluten-free post-biopsy. Seriously, until you get the endoscopy, enjoy all your glutenous foods! I actually started a blog and kept track of the stuff I enjoyed before going gluten free and it made it more fun, even knowing I might be hurting my intestines. But it's all for the sake of getting a definitive biopsy, so try to keep having gluten till then!

I also had anxiety and still do, but it has been getting better as I've taken gluten out of my life. The only exception is the anxiety about foods maybe contaminating me, but that's a bit more reasonable and controllable, I think.

I've heard the "bible" of Celiac is Peter Greene's "Celiac Disease: A hidden epidemic". It's a book that really does a good job explaining how it works and what the testing, diagnosis, and lifestyle change is like. I've been devouring it since my test results were finally positive. Just don't let yourself be tempted to take gluten out just yet!

Also, if you have an iphone or ipad, they have an app called "Is it Gluten Free?" which you have to buy but it's very worth it. It keeps a pretty huge database of things that have been verified gluten free (or not).

Good luck! And feel free to browse my blog if it might make you feel less alone (listed in my profile).

[Darn210]

Just thought I would throw in that this thread is three years old . . . pretty sure that the original poster has had his/her biopsy by now.

[GFinDC]

I don't know Janet, I had to wait 4 months to see a celiac specialist, just for an office visit. Of course by then I had gone gluten-free and already knew I had celiac or extreme gluten intolerance or something darn nasty and gluten related. Maybe this feller will pop in and tell us his results. Then again he last visited in 2008, so maybe not.

What the hay, it's a good thread with a lot of good info anyway. I am liking your blog GFShay.

[Marz]

Gah, what is with people resurrecting old threads??? The OP will probably not be around to see your insightful comment, just keep it to yourself

[jizzzzie]

That is so true, I don't even think I realized.. And now it's ... five and a half years later!! LOL