Is All This Really Worth It?

[1965kid]

Granted I have had gut problems all my life (Im 42) I have had cronic runny stool, anxiety, depression, all the symptoms.

I found out 2 months ago I had Celiac.

I am a widowed male with a daughter who doesnt have this problem. Nor does anyone I know.

I cant eat with anyone anymore. I get so confused about what I can eat and what I cant.

Pots, pans, spoons, CC, ARGGGG!

I can have this Ketchup, but not this one. I can use this broth but not this one!

Damnit!

How do you people live like this?

I have been gluten free for 5 weeks. I am sure I havent messed up. I have figured out I cant eat lactose in large quantities.

But I have had it.

This whole thing of not being able to eat what I want, and constantly worring about what I can eat has got me more depressed than the Gluten ever did.

I am not sure I would rather just keep having the problems I had before and just eat what I want to.

I dont feel any better anyway!

This is impossible.

I am all alone in this and everyone thinks Im making too much out of it all!

Am I really going to start feeling better?

Because if Im not, I am going to eat what I want and the heck with this crazy diet!

[BRob66]

I was just diagnosed as well and have been gluten free for about 2 months,,,the research was time consuming,and i guess it depends on your reactions and symptoms. I was using a bottle of Benadryl every other day...It is worth it for me and i feel alot better and hopefully you will too. i am being treated by a naturopathic doctor,because I am also reacting to soy,milk,eggs and a host of other things. Hang in there....BRob66

[Fiddle-Faddle]

YES!!! It is most definitely worth it! Especially if you have a child--you do want to be around to see her grow up, don't you?

I don't mean to be insensitive--I recently lost a friend and colleague to non-Hodgkin's lymphoma--and he most likely had undiagnosed celiac.

Hey, you can eat out with ANY of us!!!!

It is overwhelming at first, but after a few months, it will become second nature--you will know which brands are okay, you will carry a pocket magnifier to help read labels, and you will be giving advice to other newbies!!! And you will also be feeling much, much better if your primary issue is gluten.

There are people with other issues on top of the celiac thing here. I don't want to scare you off, I just want to let you know so if your symptoms don't improve, you know whom to contact for advice. Some here have additional food intolerances; some have mercury poisoning, which can cause a kind of gluten intolerance. Many for some reason also have Lyme disease, which also causes a kind of gluten intolerance (though not specifically celiac).

Your problem with lactose is most likely because your villi are damaged from the celiac, and the villi are what are supposed to produce lactase (which helps digest the lactose). In a couple of months you might be able to add milk products back in your diet. In the meantime, soy ice cream is really good, as is almond milk (my favorite, and I can have dairy!) Yogurt might not be a problem for you as the lactose is already broken down by the fermentation. And coconut milk makes great coffee cream (though coffee is VERY unkind to leaky guts--you might want to switch to green tea for a while).

Most of us learned that we did not feel better when our diet consisted of large amounts of gluten-free substitutes for the breads, cookies, pastas, etc, that we were used to eating (what did us in, in other words). So if you are eating a lot of that, no wonder you are not feeling better.

I hate to say it, because I don't think you want to hear it, but for the first few months while your gut is healing, your best bet is to eat lots of fresh vegetables, fresh fruit, plain grilled fish, chicken, and beef, rice, potatoes, eggs, and whatever frozen or canned vegetables and fruit you might also like. You can certainly spice things up, though--you already discovered which ketchup is good. La Choy soy sauce, Wal-mart and Target brand soy sauce, and San-J wheat-free Tamari are all gluten-free, and McCormick spices are all good. (I have developed quite a taste for curry since going off gluten!)

If you like Indian food, most shelf-stable Indian entrees are gluten-free, as are many Thai instant rice noodles (read the labels, though--there's one brand that isn't and I can't remember which, sorry).

Many people do complain about cc at salad bars, but I have been very lucky with salad bars. Just stay away from chicken/tuna salad, as it often contains (gasp!) bread crumbs to stretch it out and absorb extra mayo. At any rate, at this point, when you are starting out, try to keep things as convenient as possible. If that means risking cc at salad bars, I say go ahead and risk it for now, because it is more important to keep your sanity and still get fresh vegies and fruit. Once you've got your bearings, you can always reassess and figure out if you should eliminate salad bars or not.

Hang in there, and please let us know how you are doing!

Please feel free to post any questions, recipe requests, restaurant questions, etc. that you can think of.

[YoloGx]

Granted I have had gut problems all my life (Im 42) I have had cronic runny stool, anxiety, depression, all the symptoms.

I found out 2 months ago I had Celiac.

I am a widowed male with a daughter who doesnt have this problem. Nor does anyone I know.

I cant eat with anyone anymore. I get so confused about what I can eat and what I cant.

Pots, pans, spoons, CC, ARGGGG!

I can have this Ketchup, but not this one. I can use this broth but not this one!

Damnit!

How do you people live like this?

I have been gluten free for 5 weeks. I am sure I havent messed up. I have figured out I cant eat lactose in large quantities.

But I have had it.

This whole thing of not being able to eat what I want, and constantly worring about what I can eat has got me more depressed than the Gluten ever did.

I am not sure I would rather just keep having the problems I had before and just eat what I want to.

I dont feel any better anyway!

This is impossible.

I am all alone in this and everyone thinks Im making too much out of it all!

Am I really going to start feeling better?

Because if Im not, I am going to eat what I want and the heck with this crazy diet!

I don't know about you but for me it definitely is worth it to not get sick all the time (colds, flu, bronchitus etc.), to actually have energy and a clear mind, to have a heart that doesn't race, to be able to exercise without wrecking my joints or getting headaches, to not be cranky and misplace things constantly.

You can still socialize--just find places you can eat--or take you own food along (invest in some blue ice and a food carrier--and always cook extra so you have something you can take without thinking about it).

I usually can eat at a Mexican place as long as I get the corn tortillas. For American food just eat the meat and potatoes and veggies without croutons or vinegar (use lemone and oil for dressing instead). Also Thai and Vietnamese cuisine is good. Chinese can be debatable--you need to check on what they use for thickener. You may have other places you can also eat at probably like Indian (from India) and maybe even some African food etc.

Mainly its just acquiring new habits--which is never easy--however beleive me it gets easier. Locating a support group near you may also help.

I also suggest you try things to heal the gut like bromelain/papain and pancreatic enzymes, co-enzyme B vitamins (these are more absorbable--and very important for digesting and absorbing nutrients from your food etc.) , Vitamin D (cod liver oil if you can handle it!) and slippery elm and marshmallow root (which soothe and heal the lining of the gut). By taking these supplements it makes you less subject to getting so easily poisoned just because someone else used a pan that cooked something else that had wheat in it.

It also helps to exercise at something that gets your heart going, and meditate a little whether its just walking, washing the dishes, cleaning the house with music on (or not!) or doing yoga. Good luck!

Yolo

[Fiddle-Faddle]

Chinese can be debatable--you need to check on what they use for thickener.

Yolo

Don't forget that the soy sauce at Chinese restaurants has wheat in it!!!!!!! But you can certainly bring your own soy sauce--there's a brand, Panda, I think? that makes gluten-free little plastic single-serve packets.

[babinsky]

I am new to this too and sometimes overwhelmed. I just left my god daughter's birthday party at Chuck E Cheese where I could have nothing including a piece of her birthday cake ....BUT, I didn't come home like I normally would, with a terrible stomach ache, headache, joint pains, ...on and on.....and not know what was wrong with me. This is not always easy and I am sad for myself that I have it ....that being said I am so happy I was diagnosed so I could have some choice over my health. There are so many people who are sick and do not have a doctor willing or even able to get a correct diagnosis. So try to hang in...I too am waiting for it to get easier as everybody seems to say..but my numbers are "off the charts" and my biopsy didn't show even one healthy area so I will do whatever it takes to heal and I hope you will do the same for yourself.

[par18]

I think anyone who has had extreme symptoms as the result of Celiac and then once starting the diet and seeing positive results will agree that it is "more than worth it". For me I basically got my life back and it is just a matter of navigating from there. I don't look back at what life was like (good or bad) but rather focus on ways to adjust and hopefully help someone else. I was so grateful to recover that I was more than willing to be as compliant as possible and leave the "poor me" or "why me" to someone else more deserving (think of all those people who have a terminal illness with little or no hope at all). Just the other day I was explaining to a waitress what I could/could not have and she started to feel sorry for me. I had to tell her that there is nothing to be sorry for and together we found something on menu that was ok. The more normal people are around me the more normal I feel.

The people I really feel sorry for are the 95-97% undiagnosed Celiacs. They are going through a lot of difficult times and have no idea what is wrong.

There is nothing wrong with feeling a sense of sorrow about what has happened in your life but the quicker you can adjust and get on with living gluten-free then the better chance you have a higher quality of life down the road. It (gluten-free awareness and choices) will only get better.

Hope this helps.

Tom

[Mr. Pep'r]

Yes it is worth it however I understand how you feel!

It is a major PITA to eat out or travel. I just got back home from a trip back east and even family members who "love me" made it imposable for me to eat. I had to fend for myself!! It was ridiculous to say the least and thank god I have the support of my wife. It seems that no matter how hard I try on the road and watch what I eat I still get sick. But I have to try and make this work and you should also try.

Sorry to hear about your loss.

[cyberprof]

Kid,

It is overwhelming at times and I think that you are at the worst time in terms of acceptance. One-two months is far enough in to know what you're doing but not be comfortable with it yet; you have made all the sacrifices but still don't feel better (that's 3-6 months minimum); and since you don't have any support you don't see the benefits to continuing.

It will get better, easier. It's almost second nature to me and I'm 10 months into the diet.

I think others have recommended support groups; being a guy, maybe that feels weird to you but a real-life friend or two would help.

I'm sure your daughter is very important to you. If she were sick, you'd help her. Getting yourself healthy for her sake and being there for you both is important: eating gluten again would endanger your health and your future.

Please take care of yourself, vent here and ask for help. I hope that you can ask your friends and family to lay off suggesting that "you're making too much of it". They are wrong.

[dandelionmom]

It is hard sometimes but it is so worth it. I had no idea how much my "stomach problems" affected my life until I started to heal. Hang in there. You can eat with your family and friends; it just takes a little time to figure out how. But once you know what you're doing, it isn't that bad.

[kbtoyssni]

I think this is absolutely worth it. The first few months are definitely the hardest, so hang in there. If you can get past the HUGE learning curve on what brands are ok and how to order at a restaurant, hopefully you'll feel well enough to feel the same way. Sometimes it helps to have external motivation for difficult situations like this - maybe being healthy to take care of your daughter can be your main motivation to do this.

[tarnalberry]

Granted I have had gut problems all my life (Im 42) I have had cronic runny stool, anxiety, depression, all the symptoms. I found out 2 months ago I had Celiac. I am a widowed male with a daughter who doesnt have this problem. Nor does anyone I know.

you may find that there are actually more people who do have it, but they don't know. 1 in 100 have it, but around 1 in 1000 are diagnosed, so it's not that surprising that you dont know anyone who isn't diagnosed.

I cant eat with anyone anymore.

you can, but you may not have figured it out yet. I went out with friends (after skiing today) for sushi. oh man it was good! it just takes time to figure out where you can be confident of eating, and what you can eat at places you can't be confident of, and when you should bring things with you so you're covered no matter what. (it also helps to shift mindset and realize that getting together for dinner with friends is more about friends than dinner, and you *can* separate the two, though it may take time.)

I get so confused about what I can eat and what I cant. Pots, pans, spoons, CC, ARGGGG! I can have this Ketchup, but not this one. I can use this broth but not this one! Damnit! How do you people live like this?

5 weeks isn't a long time to relearn a whole lifestyle. you've had 42 years to learn the one you'd been used to. 5 weeks is a nothing in comparison, so try to remind yourself that patience is a very different game here. most of us live like this by *living*, but with a little more awareness of what we're consuming. you will figure it out, but it can be complicated if you're not used to it, and it will take time to learn and become second nature - but it will become more natural.

This is impossible. I am all alone in this and everyone thinks Im making too much out of it all! Am I really going to start feeling better?

Because if Im not, I am going to eat what I want and the heck with this crazy diet!

you'll find a lot of people who are successfully gluten free, so it's not impossible, or alone, though I think all of us can understand how you feel that way. you certainly should start feeling better if you've truely eliminated all gluten and don't have another problem contributing to your symptoms, but it may take a number of months, if you've been damaging your body for a number of years with gluten.

[ravenwoodglass]

All I have to say is I wish my Mom had done the diet. I would not have lost her at 20 to celiac related cancer. I wish my twin brother had done the diet, we lost him to autoimmune liver disease a month before my 16th birthday. To see what not being on the diet did to me in time look at my signature. To see what being on the diet did for me, look at my signature again paying attention to what is in bold.

[hayley3]

I have to agree with Ravenwood.

My entire family has died and I'm only 50. Within a 10 yr time span I lost them all.

I have been sick on and off since since they took my gallbladder at 24. I am doing the gluten-free thing on my own, but I have tried everything else and this has to be the missing piece of the puzzle. I am doing this for my 11 yr old daughter because who will she have if I'm not here.

I think the thing that helps me is I know that grains are damaging everyone, even though they don't know it. Whether they have altered the grains or our bodies were just not meant to eat them, the times are changing for everyone. I am grateful, that I got a wake-up call and I am still healthy enough to change my diet and continue to live. The rest of my family did not have that option.

All I have to say is I wish my Mom had done the diet. I would not have lost her at 20 to celiac related cancer. I wish my twin brother had done the diet, we lost him to autoimmune liver disease a month before my 16th birthday. To see what not being on the diet did to me in time look at my signature. To see what being on the diet did for me, look at my signature again paying attention to what is in bold.

[1965kid]

Thanks for all the replies. I feel better today.

There is just so much to learn.

One day at a time I suppose.

Thanks again.

[SillyBoo]

I do understand your frustration. It is really tough at first, especially if you do as recommended and keep your diet very simple for the first few months. But the benefits are definitely worth it, in my opinion.

I was so relieved to find out what was making me feel like I was dying. It could have been much worse news! And although the diet is challenging, I was (and am) thankful that there was something I could do to get better. Not only that, but it is totally health-supporting, without nasty side effects. Just think of the treatments for so many other diseases, with side effects that are almost as bad as the disease itself. We are truly fortunate to be able to take this into our own hands and heal just through dietary changes.

Of course, the down side is that it is labor-intensive and requires some lifestyle change. But in time, it just becomes part of who you are and what you do. Probably one of the hardest things is the shift in thinking about food and what role it plays in our lives.

Good luck and hang in there!

[Crystalkd]

It seems to me that you are having a normal reaction. You're new to the diet and its the holidays. I've been on the diet since July and there a def things that are still a major pain and I still have hard times dealing with it but I'm greatful to have to know what's wrong. Hang in there. It gets easier and it's normal to get frustrated. It's a major change!!!

[ravenwoodglass]

Thanks for all the replies. I feel better today.

There is just so much to learn.

One day at a time I suppose.

Thanks again.

Something to keep in mind also is that there can be a withdrawl aspect to gluten. It can make the beginning months very up and down, especially with the learning curve this diet requires and the ease with which crosscontamination can slip in. After being gluten-free for a while some of us even have a nasty sudden depression hit as one of the first signs we are glutened. It is hard at first but it really is so worth it. I am glad your feeling better today.

It's okay to be angry about this at first, it is a big change. Feel free to vent here whenever you need to. Most of us have sure been there too. My first month I burst into uncontrollable sobs in the middle of the market.....my DD wouldn't shop with me again for months. LOL

[Offthegrid]

I was angry for a long time about the diet. I felt so cheated. It felt so unfair. I'd look at someone eating gluten and get mad. Sometimes I cried. And too often I cheated.

Now unfortunately for me I am discovering multiple food intolerances. It is still trial and error. But I am so much better than I was a year ago when I was dx'd. At that time, I had diarrhea so often I sometimes I assumed I had food poisoning. I used to have insomnia so bad that I'd be crying at 4 a.m. that I still wasn't asleep and had to get up in 2 hours. Headaches. Fatigue. I had unexplained tingling and numbness in my arms and legs. All of these caused by gluten.

You will discover good gluten-free recipes. You will learn what you can eat at restaurants (in my case, it was cheese, butter and vegetable oil, which contains soy, that made me sick at restaurants.).

[Phyllis28]

For me the diet is worth it to stay healthy and feel good. After a period of time eating gluten free will become second nature. You will put coping strategies in place to suit your life. Below are some of the ones I use:

1) Toss away the concept of a standard meal. It's ok to have rice and eggs for dinner and a baked potato for breakfast.

2) Create meals that taste good from gluten free foods. I like spegetti sauce over mashed potatoes. Microwave pizza sauce, cheese and pepperoni layered between corn torillas.

3) Take your own food to social events. Let your friends know you want to be invited along for their company even if you can not eat the food.

4) When traveling rent a room with a kitchen. Either bring food with you and/or locate a store to shop at before you leave home. I have packed homemade meals in individual servings, froze them, packed them in a soft sided cooler with blue ice, put the cooler in my luggage and checked it on to the plane.

5) Leftovers. I make more that I need when I cook dinner. I eat the leftovers for lunch. I freeze what I don't think I will use in a timely manner.

It will get easier.

[jerseyangel]

Thanks for all the replies. I feel better today.

There is just so much to learn.

One day at a time I suppose.

Thanks again.

That a very good way to approach this--one day at a time

It is so very worth it to me--when I think of the 20 years I spent sick and anxious. True story--we recently moved out of state, and I went on Saturday to get my new driver's license. She handed me my new license along with my old one (with a hole punched in it to render it invalid). Anyway, the change in my face, between the picture taken in 2003 (a year and a half before I was diagnosed--and ill) and the picture taken on Saturday is staggering. I seriously looked 10 years older, bloated, pale and just plain tired.

I wish I could post them side by side--you know, a picture being worth a thousand words.....