What To Expect

[Anthony22]

Hi everyone. I am male, 38 years old. I have not been formally diagnosed. About 6 years ago, I became a vegetarian and had a bad diet and ate bread at almost every meal. I was going through an incredibly stressful time, and I became very sick with a flu-like virus that kept me in bed for 3 weeks and I went on antibiotics. After that, I developed digestive problems. I started eating meat again but didn't feel any better. About 4 years ago someone told me that my symptoms sounded like gluten intolerance. I stopped eating wheat about 95% (no bread, pasta, but I still ate condiments with gluten) and felt a little better. But my digestive problems remained. I decided it couldn't be gluten issues and went back to eating wheat regularly. My doctor said I had IBS and needed to relax more. I have had digestive problems ever since (toilet issues, bloating, loud embarrasing stomach noise) and have become seriously depressed, anxious, and irritable. On January 10th I decided to go on a 100% gluten-free diet just to see what would happen. Within 4 days I felt 98% better. I lost 3-inches off my waist within a week without losing weight just from the bloating going away. My symptoms vanished almost completely, and I felt like I had my life back for the first time in years. I said to myself: "I had forgotten that this is what I'm supposed to feel like." A few days later I was sick again. I scoured my food labels and found gluten in a condiment I had the night before I got sick. 4 days later I was well again. 3 days later I got sick again. I checked all my labels and found no gluten. I called the companies that produced the products I'd used and discovered hidden gluten in one of them. A few days later I was better. A few days more passed and I was sick again. Again I found a hidden source. Then I got better. Anyway, it's been a month since I went gluten free and I haven't cheated once, but I've had 2 or 3 accidental and minor "glutenings". About 4 days ago I got sick again. I haven't eaten out. I've checked all the labels and called all the companies whose products I used (including toiletries). I absolutely can't find anything with gluten in it. Is it normal to have these kind of relapses along the way even if there's not gluten ingested? I also found that each new glutening or relapse makes me feel a little worse and sicker than the last one. This most recent time, after feeling the best I've felt in years 3 days ago, my digestive system is going crazy and I've been so depressed today that I called in sick and cried on the couch with my dog all afternoon. Any advice from others about what to expect over the coming weeks would be appreciated. I'm especially bothered by stomach noises which make things very uncomfortable and embarrassing for me at work. I have a dream job that's really secure even during these crazy times and I don't want to lose it, but my anxiety and depression are making things really tough. Thanks, Anthony.

[Jestgar]

It does get better.

I had "glutenings" without gluten up to 1.5 years after stopping gluten. Never figured out why. Now I can trace all my accidents.

Also, some people's reactions never get better, but mine have become more mild. Hang in there. It will get better.

[GFinDC]

Hi Anthony,

When starting the gluten-free diet it is simpler to not eat any processed foods. Making all your foods from scratch yourself is a good way to know you are avoiding gluten. That way you don't need to spend all your time reading labels too. There are a lots of threads here about what to eat etc and lots of recipes too. Keep going because it can take time to heal your gut and feel better.

[maile]

This most recent time, after feeling the best I've felt in years 3 days ago, my digestive system is going crazy and I've been so depressed today that I called in sick and cried on the couch with my dog all afternoon.

Hi Anthony,

have you checked the dog food? There are a number of posts that caution about gluten in pet foods causing problems for some.

As for the depression, have you tried B12? I get the neuro symptoms and the B12 (sublingual - it skips the digestive process that way) helps quite a bit

It will get better, I'm new like yourself and right now feel like it's a rollercoaster but I have faith that it will get easier in time.

[teemaree]

Anthony,

I am pretty much in the same boat as you mate....

I have only been gluten-free for about 10 weeks, I have been very very diligent with reading labels,

I too feel fantastic when I am not being accidentally glutened..

What I have found, is that when I trust things that say Gluten free, and try something other than plain old meat fruit and vegetables, is when I run into trouble. I am not sure if it is some other ingredient in things that gives me the reactions. I am suspecting that some forms of soy are the thing that is giving me the gluten effect. I have found some fantastic foods that say GLUTEN FREE!.....

and you think wow!!!!! I can actually eat that!..... like Basco cake..and pancakes .. and even gluten-free bread.. But once I have eaten them I soon learn and discover that "I WILL NEVER EAT THOSE PRODUCTS AGAIN" because the reactions approx 30 minutes after ingesting them is too much to bare, then the next following days...It really scares me off trying new foods, that say gluten-free, and as GFinDC said, it seems to be the processed stuff that you buy, and packeted items that cause the reactions.

I am finding that it is safe to just stick to just some items I know won't cause reactions...

they are plain and boring, and after weeks of eating the same stuff... I am hating the thought of eating, I am sick of cooking and spending every spare second in the kitchen preparing meals I can eat . Cooking rice, etc...then all the washing up, then you sit down to eat after all that preparation, and it doesn't fill you up..you still feel hungry, and its bland and boring. And when you try to make something exciting but leave out certain ingredents, it doesn't taste as good as the real thing.

I find that eating is such a huge chore for me now, I also need to gain weight because I have lost so much, and each week I am finding I am loosing more weight, #1. because I am not eating enough of my meals , because they aren't what I want to really eat...so I will have a couple of mouth fulls...

Then when I realize I need to eat, to get nourishment, I force feed my self, and again thats not enjoyable...So that is when I decide to find substitutes of processed stuff that says gluten-free...and sure enough, I get glutened by it.

It's a merry go round............

I do love the way I feel though, when I am gluten-free.. no stress , anxiety, pain, headaches ,anger, tiredness, lethargy,nausea, gastric, stomach aches,

But hate the entire process of eating, it has become a balancing act...I have to eat or I die..but eating isn't helping me gain weight, and I am hating what I have to eat, it's not enjoyable,

[ang1e0251]

I'm going to second the question about the dog food. Or if you share a can opener with gluten items.

You're both right. Gluten is sneaky and can hide in all kinds of places you wouldn't expect. The problem with foods marked gluten-free is that you tend to not read the labels that carefully. Read every label! Some gluten-free foods have small amounts of gluten that they are allowed not to list. These very small amounts don't bother some, but others who are more sensitive can react to even these trace amounts. Another problem is cross contamination. If these products are produced in facilities with shared equipment or wheat used somewhere in the same factory rooms, you can have CC. Again very sensitive persons will react to this. I have been reacting to guar gum, that took me awhile to figure out. Last spring it was caramel coloring. Whenever a problem creeps up, I have to stop and look at every food and spice I have been using. I ask myself what is new? Even if that item should be gluten-free like the tea I was drinking in January, I stop it to see if I feel better. Usually I can find the culprit.

As far as your food being boring and cooking a drag...I do not cook every night. That would be a drag. I do cook extra food every time I cook and I do cook ahead on my day off. Like rice, I use a rice cooker, the easiet way to go. I make enough for several meals. Meats and entrees I cook a lot! It can be frozen in portion sizes or just eaten at the next few meals.

If you feel the food you cook is unappetizing, it's time to get on the forum with your favorite foods and ask how to make them gluten-free. My food is not boring or unappetizing. I cook pretty simply for the most part but everything is tasty. No one wants to feel deprived. You shouldn't feel that way either.

I challenge you to post what you would like to eat and see if someone doesn't find a way for you to have it!!

[Anthony22]

Thanks to everyone who has replied to my post. It's been a real up and down few days. I've never been so moody in my life.

Thanks for the suggestion about the dog food. I don't eat dog food obviously (the only thing I know of that tastes like dog food is the gluten free bagels I've got) but I guess it's possible to get it on your hands, etc. I checked and my dog's food is gluten free. So one less things to worry about.

I really enjoy reading about other people's road to recovery, so please post away!

Anthony

[GFinDC]

I had lots of back steps (notice I didn't call them flub-ups) when I started and some not that long ago too. I ended up getting past most of the accidental glutenings when I started doing all my own cooking. Many times I would end up dropping back to a very simple rice and veggie diet for a few days to try and get past the flub-ups. Oops! I said it!

Now I do what angie0251 said, make lots of food every time, and don't cook every day. I spend less time preparing food than I did to before gluten-free, and I eat better foods for me. And it tastes fine to me, not that I am a foodie or something though.

My most recent problem was, I think, lemon extract from Mccormick. That or some coconut powder I used. Either way, no biggie to me if I don't use those products again, I can get along fine without them. There is always fresh lemons zest or lemon juice, and shredded coconut as an alternative.

I sometimes make my rice/quinoa and veggie pretty plain with little if any spices. that way I can add different spices to it each day when I eat it. Sometimes I make guacamole and keep it in the refrig. Then after I zap my rice I will stir in a big spoon of guacamole kind of loosely. I like the contrast of hot rice with the cold chunks of guacamole. It's kind of different.

I also make eggs for breakfast sometimes by frying some pumpkin seeds or sunflower seeds for a minute and then cracking a couple eggs over them. I add black pepper, turmeric, coriander, italian herbs, garlic of course and gobble it up. You can also fry some meat or onions with the seeds.

I eat oats for breakfast too although some people do have problems with oats at first. Lately I have been making seeds and nuts brittle for a treat.

There are really lots of things to eat that you can make pretty easy. I am not a great cook but I have learned several versions of rice, red sauce, or coconut milk for a sweet version with pineapple.

The main thing for me is to stay away from most all packaged foods. And time, it takes time to get better.