Poll: gluten-free Diet - Easy Or Hard

[T.H.]

I voted difficult, and I've been doing it for a bit over a year now. I don't find sticking to the diet hard - I feel too crummy off of it to even WANT to cheat. But finding foods I can eat, and making them whenever I go out? That's been pretty much an absolute nightmare for both me and now my daughter. The amount of cooking I have to do now is also something I don't really enjoy all that much, and food prep takes about 6 hours on the days I cook, and if I'm lucky, I can have leftovers for the next day and only have to do this every other day, plus one day a week for essentially cooking and food prep the entire day.

My dad is celiac, and while he complains, I look at what he does and it doesn't seem that hard. New foods, being careful about contamination, and reading labels. We'd been through this once already when we found out my son had dairy problems, so I thought: no problem. But after trial and error and false starts over perceived food allergies and intolerances, we've finally figured out that we are so sensitive to gluten that we react to foods that contain less gluten than even most extremely low gluten companies test for (5ppm). Thought my daughter could take more, it's looking like she can't. We even recently went to an allergist and discussed this with him, and showed him our food logs and results, and he's agreeing with my conclusion: it's looking like celiac disease problems, not allergies.

So just to give a taste of what it's like to find food we can eat, or make a meal, here we go.

For produce, I get to find out the farm that grew it. For fruits in trees, I have to ask about waxes, coatings, or sprays that might have been used on them and if they have anything that is gluten-derived. Even corn or soy derived is iffy. If it's fruits or veggies on the ground, I have to check out everything that they might rest on or that is poured over them or contacts them. Does the mulch have any gluten grains or straw in it, including oat straw? Is there any straw used to cover the fruit (strawberries and mushrooms can have this)? Are any gluten grains grown near to their other produce? Are any animals that live/excrete near any of the produce fed gluten grains - sometimes chickens have been used to keep bugs down, but they are fed supplemental grains that often contaminate the ground. Is there fish emulsion used (gluten CC)? Slug bait? Gluten cover crops that are dug back into the soil? Compost that contains gluten containing grains?

Usually, they know some of the answers, but the others...they buy their compost or substances used in their compose, or their chemicals, from someone else. So they call up, or I have to make more phone calls, and more phone calls. And more often than not, in the end, I can't use their stuff anyway. It's frustrating, time consuming, and we're still trying to find things that we can eat and stay healthy.

Anything processed, nearly, is out. We found an olive oil that seems okay, and I believe a salt. We buy our meat from special sources, i have a bulk quinoa from bolivia that we're testing to make sure it's okay, but the others have all had trouble with processing, soap used on machines, transporting, packaging materials or cleansers....

So, for cooking? Here's the cooking for one dish, which ended up STILL causing trouble, but it's relatively good example. It was a mustard chicken. So first, I spent about 5-10 minutest washing mustard seeds, then prepare the mustard over about 36 hours with vinegar and a few other ingredients. I took 3 hours to make home made chicken broth. I went out and picked fresh herbs that I've been growing just for such an occasion because the store bought ones make us sick, and the gardening takes about an hour a day to maintain - more, soon, as I'm adding as much as I can so I have more to eat. I made the sauce that I used the mustard in, taking about 20-30 minutes. Then actually cooked the dish, which took about 1 1/2 hours of labor there.

And my daughter got sick off of it, because that brand of vinegar and mustard seeds seem to be big no-no's for our level of sensitivity.

It's pretty much derailed my life, at this point. I feel more like I'm living on the prairie (which I'm sure my mother, an actual farmer, would mock me and my soft life for, honestly). I really do think this has been terribly difficult, for the whole family. It's also fairly isolating, because even among celiacs, we're still in the minority, so gluten free potlucks and such are a total disaster for us. We have to bring our own food everywhere. Trying to find new sources of food when we go to a new place for a trip has so far been a failure, although we've only tried twice. Christmas will be try #3. We'll see how it goes.

However, with all the trouble, all the extra time, all the frustration? What is NOT difficult is staying away from gluten. It's so miserable getting sick, I can't imagine NOT doing this work to find good food, at this point. I'm absolutely willing to put in the extra effort to get safe food...just not always the extra effort to make it taste good. :-P

[sa1937]

I find the gluten-free diet to be relatively easy and I've only been at this for 8 months now. The most difficult was my first grocery shopping trip, which took forever, but I can maneuver the store without any problem now. If only manufacturer's labels would be easy to read...no red background with tiny black words.

I've been cooking forever and many things I prepare now are things I've prepared all my life or there are easy substitutes for many ingredients. Baking is a continual learning experience and I am still trying for that "perfect" loaf of bread, which has remained elusive. Thankfully my local health food store started carrying Udi's. I cringe at paying $6.19 a loaf but it's cheaper than eating out, which I basically don't. My friends and family have been great and are quite aware of what I can and can't eat...or ask me about certain ingredients if they are unsure.

One advantage is that I live alone and have total control over my kitchen and don't have to worry about preparing separate meals or have little glutenous fingers all over everything.

Of course, I miss the spontaneity of being able to grab a quick bite to eat somewhere. Or stopping at the deli for fried chicken. But then I do keep a stash of home-cooked foods or soups in my freezer that can solve that problem. And I always have something safe to munch on in my purse.

So my consensus is that it's a PIA at times but totally manageable without too much trouble.

[sa1937]

I voted difficult, and I've been doing it for a bit over a year now. I don't find sticking to the diet hard - I feel too crummy off of it to even WANT to cheat. But finding foods I can eat, and making them whenever I go out? That's been pretty much an absolute nightmare for both me and now my daughter. The amount of cooking I have to do now is also something I don't really enjoy all that much, and food prep takes about 6 hours on the days I cook, and if I'm lucky, I can have leftovers for the next day and only have to do this every other day, plus one day a week for essentially cooking and food prep the entire day.

WOW! If I had to go through what you do, I'd have voted difficult, too.

[naiiad]

I've been gluten free for a little less then a year and it's still incredibly difficult for me. Even after all this time I still get a reaction about once every two weeks, sometimes more. I don't know if I'm just being negligent or what, but it's an ongoing stress for me.

Cross-contamination is a big issue for me. I have a big family and a busy/messy kitchen. I try to label my food but sometimes my family uses my stuff without thinking. I've also realized that I need to stay away from anything pre-packeged save for a few products i use regularly.

After a bad reaction earlier today (from either a pan that wasn't cleaned properly, or cheese that touched bread or something) I set up my own min-fridge in the living room... so I hope that helps.

I suck lol

[Skylark]

Cooking gluten-free is not particularly hard; the hard thing is the overall impact on my lifestyle. I barely ever eat out, and I have to cook a lot more than I would otherwise. I used to love to explore "hole in the wall" ethnic restaurants, and that is not an option for me any more because I cannot generally communicate my needs well enough. Traveling takes a tremendous amount of research to find gluten-free restaurants in a particular area. I was very careful in Mexico and still came home sick.

I am not one to make a big deal of this and as I said I do not find the cooking hard. But when I look at it honestly, the diet has made a fairly large impact on my life.

[Loey]

I've been gluten free for a little less then a year and it's still incredibly difficult for me. Even after all this time I still get a reaction about once every two weeks, sometimes more. I don't know if I'm just being negligent or what, but it's an ongoing stress for me.

Cross-contamination is a big issue for me. I have a big family and a busy/messy kitchen. I try to label my food but sometimes my family uses my stuff without thinking. I've also realized that I need to stay away from anything pre-packeged save for a few products i use regularly.

After a bad reaction earlier today (from either a pan that wasn't cleaned properly, or cheese that touched bread or something) I set up my own min-fridge in the living room... so I hope that helps.

I suck lol

You don't suck. Our dietary restrictions do. Thankfully we have each other on this forum. I'm blessed to have a family that has chosen to eat gluten-free with me (well my son is away at college most of the year but he deals with it when he's home). I'm extremely to getting CC'd and also have triggers that I'm still trying to figure out. If I was following a strictly gluten-free diet I think it would be a bit easier but I have an ulcer and IBS. I go see a new doctor in January (YAY).

Just hang in there and try to have a healthy and happy holiday.

Healing Hugs,

Loey

[Monklady123]

I'm gluten-free less than a year and so far I've found it to be pretty hard. We have lots of meals at church -- potlucks or working lunches, etc. -- plus the issue of communion is still unresolved. I go out to breakfast regularly with a friend and that's not working now... I seem to be getting more sensitive to cc the longer I'm gluten free.

So yes it's hard. But -- I felt so awful before that I have NO desire to eat any of it. I mean yes, I do wish I could eat pizza or something like that when I see others eating it. But when it comes right down to it and I imagine biting into whatever it is and then thinking about how bad I'll feel...well I won't.

[sb2178]

Monklady-- is your church relaxed enough that you could make rice/teff/buckwheat wafers and have them consecrated? Then just store them yourself and bring on the days you'll need them.

[Monklady123]

Monklady-- is your church relaxed enough that you could make rice/teff/buckwheat wafers and have them consecrated? Then just store them yourself and bring on the days you'll need them.

Oh yes, we're totally open to all that. It's just that I hate to cook! lol.. And before celiac I had never -- seriously -- baked from scratch. So I'm hopeless in the kitchen.

Someone suggested using rice crackers but I was holding out for something more "bread like". It's a work in progress. lol..

[cahill]

gluten free is a piece of gluten free cake. But oh, the other-things free Now that is hard.

I Have to agree with this

[Juliebove]

I didn't click on the poll because I myself am not gluten-free. Daughter is. And has been for about 6 years. I just had a problem with the terms "easy" and "hard". On the surface it seems so easy! I remember my friend putting her daughter on a gluten-free diet to see if her situation would change. I don't know exactly what she was looking for to change. AFAIK this daughter had no medical issues. Other two daughters did. This one had learning and behavioral difficulties. She told me it was easy. Just switch rice for pasta and potatoes for bread.

I have a feeling this kid was still getting tons of gluten. This woman did not appear to read any nutrition labels. She often fed her kids Rice A Roni and let them eat the noodles out of Ramen packets without cooking them. She took the seasoning packets from them because she said they were on a low sodium diet.

So I was shocked to see that she was giving the kids Gatorade. When I pointed out to her that it was loaded with sodium, she flipped out. Her husband was in the kitchen at the time and he agreed with me. So she then checked the label and said I was right. But she still kept giving it to them.

I also felt she didn't feed her kids enough. The youngest one weighed only 20 pounds at age 3. This is not the kid that had been on the gluten-free diet. And BTW she only tried the diet for a couple of weeks. I also think she was clueless about cross contamination and the like. Anyway, she once invited my daughter for lunch. She opened a small can of Spaghetti O's for four kids. Served cold. And when she invited me for lunch she gave me a single slice of white bread spread very thinly with peanut butter then folded it over. That was it! Luckily the Dr. stepped in, gave her a list of serving sizes and told her she needed to make sure the girl got enough food. I think the older kids were just more adept at sneaking food which they often did. And often got punished for. But I digress.

When Angela was first diagnosed, it seemed easy on the surface. Perhaps not so easy for her. She could no longer eat the school lunch. I have been told (don't know if it is true) that if I press the issue, the school would have to provide her with suitable food. But she has additional food allergies so it would be quite difficult for her and as happened to her when she went to camp with school she might be stuck eating the same thing day after day. gluten-free pasta, apples and sunbutter sandwiches on Ener-G bread.

Many were the times I glutened her in those early days because the labeling laws were not as good as they are today. I was giving her Mentos not realizing that they contained glucose syrup. Yes I know it can be gluten-free but she also has a wheat allergy so she shouldn't have had it at all. It now says it has wheat on it. But I didn't know that then. I also didn't know that she needed a separate toaster.

So I guess it is easy from the standpoint of... Once you know what to look for and what to do, the diet is easy to do. If you eat at home or maybe buy things from the grocery store and put together a meal on the fly.

But if you are eating at a restaurant or have to eat away from home and have no access to a grocery store, it does get harder. Angela has two dance conventions coming up and I know I will have to pack food for the both of us. There are food places around there but I do not know if we can get suitable fare.

And I guess it can be hard psychologically. For daughter it is an allergy and not celiac. So different from the standpoint of testing. The Dr. told her she wanted her to eat little bites of the allergens and then she would retest her. So we went to Costco and the grocery store hoping they would have samples of such foods. They did. She ate a little cube of whole wheat bread and acted sooo happy! I felt bad for her. Now when she sees the bread in the store she says I should let her try it again.

Sometimes I think it would just be easier if I could let her eat bread again. And not have to worry about wheat in sauces and prepared food. Then again, I don't eat those things for the most part because of my allergies. There are a few kinds of bread that are safe for me. But most could be cross contaminated (if not contain) dairy, egg or nuts. I also do the gluten-free pasta because most of it does not contain eggs.

[Juliebove]

Some rice milks are processed using barley. Rice Dream is the one that comes first to my mind but I don't know if there might be others. I use Wegmans brand rice milk that is for sure gluten free. I think maybe Pacific brand is also but not positive.

The brand that Albertsons sells is not safe for us but I can't remember why. Could be that it contains one of our other allergens.

[Lincoln]

I haven't even been on the gluten free diet for a month yet but have to say I find it quite easy, however speaking to one of my friends who has never attempted to cook anything more than pre-cut chips he said that I would 'pretty much have to have a chef with me constantly', naturally I was very puzzled by this until I realised that having a lot of cooking knowledge does make it significantly easier than not having any at all. But I feel sorry for anyone who doesn't cook gluten intolerant or not.

[sahm-i-am]

I voted hard less than one year only because the "diet" is so all-encompassing. It is more of a life-style change than a diet. (I hate the word diet actually, since it sounds like a choice, especially when people make New Year's Resolutions! ).

It has been hard, but do-able, learning how to read labels, reading and educating myself and family and friends, changing habits and traditions for all the 'firsts' during the first year.

It has been hard dealing with the roller coaster of emotions me and my family have gone through. I try to keep life 'normal' for the non-gluten free family but in reality, all our lives have changed, some more than others.

It has been hard because I'm a spoiled southern belle, only child, who has really never had any crisis to deal with. Oh yes, I can honestly admit that! It's true, what can I say, but that doesn't mean I'm snobish, mean or selfish.

I am so thankful for ingredients on food labels. I am so thankful for this forum - a life saver! Those two things have made living Gluten Free much, much easier!

I am so thankful and happy that I have gained weight and energy since going gluten free. I appreciate my life and being there for family.

I'm sure if you asked me this same question next year, I will reply easy! Just not there yet! :-)

[rustycat]

I voted relatively hard, but I think it's also because of all the other foods I have to avoid: dairy, all grains, beef, pork, eggs, garlic. So many of the gluten free non-grain prepared foods have garlic or eggs in them. I finally found a soup stock that I can use, so that's really helped. I'm hoping that with time I'll be able to start eating some rice again and maybe small amounts of garlic.

I'm trying to stay upbeat, but it's taking a lot of time to make all of my food from scratch. I'm sure I'll adjust with time, but I'm finding it pretty frustrating right now.

[Lunabell]

Right now, I am finding it easy because it is so new. It is all a novelty and we are having fun making new discoveries. Plus, my daughter is only 4, so it relatively easy to control available foods. I don't know that it will be as easy for her as she moves out in the world and potentially feels different.

I have a feeling that once the novelty wears off and we all get through our testing that reality will sink in. I think it will probably get harder before it gets easier again.

[jenngolightly]

It's just that I hate to cook! lol.. And before celiac I had never -- seriously -- baked from scratch. So I'm hopeless in the kitchen.

This was me, too. We ate out - a lot! I was always sick after we ate, dh had to drive home and I'd be in miserable pain. I never knew why.

I was an extremely picky eater.

Since the diagnosis, though. I've learned to cook, and have learned to like my food. I got a few cookbooks to start with. Then I bought "food" magazine. Then I went to websites for gluten-free recipes. I bought spices.

A lot of my meals are hit and miss still, but I keep trying.

It helped for me to buy a lot of gadgets so I can make the recipes without improvising tools. I don't bake, but I do everything else. Baking is too temperamental.

[tennisman]

I voted for : The gluten-free diet is relatively easy and I have been gluten free for more than three years

[julandjo]

I'm less than one year in, and it's extremely difficult for me. If it were just gluten I have to avoid it'd be a walk in the park. But I have literally 9 foods (incl. sea salt!) I can eat, and if I'm even barely CC'd by anything else I'm a wreck. This has been the biggest struggle of my life.

[sahm-i-am]

I'm less than one year in, and it's extremely difficult for me. If it were just gluten I have to avoid it'd be a walk in the park. But I have literally 9 foods (incl. sea salt!) I can eat, and if I'm even barely CC'd by anything else I'm a wreck. This has been the biggest struggle of my life.

I just wanted to say how extremely sorry I am for you. I can't imagine what it must be like to be able to eat only 9 foods. I pray that it gets easier for you and your little sweeties. Gosh, I hope it does. Do you think as you start healing you will be able to introduce different foods?

[cO-ol]

It's been a month and a half and it's hard for me because I am still learning how to cook and even how to eat. I live with gluten-eaters which makes life a little harder. I have a feeling I'm being CC'd by stuff, and I'm learning how to deal with that still. I have a lot of ups and downs which impacts my desire to cook, which I have to do so much more of (I did want to cook tonight, and made some very tasty chicken). My dad is an amazing cook and my mom is competent so I have good cooking genes at least (and my stuff usually turns out pretty good yay).

It does get easier though, it looks like. I made myself a "Gluten Free Notebook" so I can document the cookware I need to buy, steps to eliminate CC, supplements, etc. and also document my progress with the diet. I think it'll help (plus I get to give into my office/school supply fetish, lol).

[julandjo]

I just wanted to say how extremely sorry I am for you. I can't imagine what it must be like to be able to eat only 9 foods. I pray that it gets easier for you and your little sweeties. Gosh, I hope it does. Do you think as you start healing you will be able to introduce different foods?

Oh, thank you for your sympathy. It's great to be able to vent to people who get it. Nobody in my real life does, and that makes it even harder. I had a friend over this weekend who looked at my list of foods and said "Oh that's not bad at all! That's a lot of food - you can do all kinds of stuff with that!" I said that that's literally ALL I GET. For a week or so it's no big deal, but long-term it's become a huge source of grief for me. She shrugged her shoulders and said "you're overreacting, it's no big deal" as she chomped on cookies and pizza. I could have punched her. It really, really hurt to get such a flippant attitude about my personal hell, you know?

I hope and pray that this is just a matter of healing time, too. I do a lot of praying and that's getting me through. For now, ha!