I'm Getting Worse!?

[cruzewkr]

I have been completely gluten free for the last 5 weeks and within the last few days every time I eat I feel and look like I have an 80 lb weight in my stomach and the pains are almost unbearable. I was told to cut out dairy (I haven't been able to tolerate large amounts of milk since 2004 when I was pregnant with my son), soy, peanuts, tomatoes, and potatoes but I'm not sure if I can handle cutting all those from my diet on top of being gluten free.

I also have been having trouble with my blood sugar dropping very low.

I am very scared right now because I have been losing 5-7 lbs a week and I can't afford to lose anymore. I'm down to 110 lbs and I'm 5'8.

Breakfast usually consists of chex either dry or with coffee on them (gross, I know) or an egg or two with onions and peppers on a corn tortilla. Lunch is yesterdays leftover dinner and a typical dinner is meat (mostly chicken but I eat beef and pork too) potatoes (baked, mashed, fried) and veggies (I've always been big on veggies). I snack on yogurt and gluten-free rice cakes and usually have a salad or veggies I pick at all day. I was making gluten-free pancakes but I stopped about 2 weeks ago when I noticed they did the same thing to me that all food does now. I feel like mardi gras is going on inside me and it starts within 5 minutes of eating.

I keep kicking myself because I didn't go gluten free when I was diagnosed a year ago because I looked at it as a way to drop some pounds and couldn't think of not having my pizza, pasta, and beer (I didn't know about all the gluten-free options available). I never thought I would end up like this...

Does anyone have any advice, options or a way I can learn to deal with all of this? I can't take sitting around all the time because I either don't have the energy, am sick too my stomach, and/or too depressed.

[ciamarie]

I've been gluten-free for about a month now, but I had given up most dairy (except butter) a few months ago, trying to figure out what was making the DH worse. (At the time I was calling it eczema, and using a food journal I realized yogurt and cheese made it worse.) Then on Thanksgiving I had a small amount of dairy, and the next day my stomach was complaining, pretty much like you describe.

Then you'll probably also want to check for gluten cross-contamination (CC), because the lack of energy and being 'too depressed' sound to me like they may be gluten-related. But I'm still mostly new at this myself... Have you checked your personal care items, like soaps and shampoos, etc. ? I'm sure others will have good suggestions, also.

[Kansas]

I would almost guess you are still getting gluten. I have about decided to eat all unprocessed food,(no dairy or gluten of course) as everything out there with a gluten free label stuck on it makes me sick. I get to feeling really healthy, then get dumb and try something that is labeled gluten free and then go through weeks of feeling like crap, every part of me suffers, and it is gluten symptoms. I would advise you to cut out the chex,rice cakes, anything that is already processed, I think you will feel better.

[cruzewkr]

Thanks. I am very careful with cross contamination. I went out and got my own peanut butter, mayo, etc. and clearly labeled it and I keep it separate from everything else. I even have my own measuring cups, plates, containers, etc. I don't understand how I went the first month feeling great and now all of a sudden I am worse than I was before. I haven't added any new foods and only took away the pancakes (I think it was all the milk in the mix).

I will try going without the processed stuff and see how I do. Do you think this something I will have to cut out forever or just until I have been gluten-free long enough and my guts are back to normal?

[sreese68]

First, keep a food diary to track what you eat and your symptoms. Look for patterns. Reactions can come on fast or be as delayed as a couple of days, so this process is a royal pain. Start out with a few non-irritating foods. Make sure you're getting enough fat and calories (there are a number of calorie trackers you can find). Eat as many unprocessed foods as you can. If you feel better after a week or so, add foods back one at a time. Wait a few days before adding another food. If you feel just as bad, then drop a food you suspect is a problem.

This process is annoyingly slow, I know. But it helps. And I hear you on the weight issue. I have to fight to keep it on. If I get sick, I lose ground and have to stuff myself to gain it back. People don't understand that it really isn't a good problem to have! I don't feel good when I get under a certain weight.

Also, healing from celiac takes a long, long time. It took 7 months before I felt like the old, fun, happy me was back. I haven't felt this good or alive in YEARS. It was rough getting here, but it was very worth it. Good luck!

[cruzewkr]

Thanks sreese68. Looks like I got my work cut out for me but I'll do anything at this point to be able to not be sick, eat more foods, and gain weight! It seems like the more weight I lose the less energy I have. I used to work out and run and now I can hardly lift my laptop or walk up the steps the the bathroom. I'm 26, I should be running marathons!

[sreese68]

Thanks sreese68. Looks like I got my work cut out for me but I'll do anything at this point to be able to not be sick, eat more foods, and gain weight! It seems like the more weight I lose the less energy I have. I used to work out and run and now I can hardly lift my laptop or walk up the steps the the bathroom. I'm 26, I should be running marathons!

People don't always understand how being underweight can make you feel really bad, so it's a hard one to discuss with healthy friends. Most people my age are fighting to lose weight, so they think I'm lucky to have to struggle to keep it on. I'm 43, and I have 4 kids, so being a size 0 is unusual. I lost the weight due to all my food intolerances (dairy, brown rice, etc). I had a friend at our 20th college reunion ask how I keep so trim, and I told him autoimmune disease! LOL!

Anyway, I also feel weak when my weight goes down below my acceptable minimum. I get jittery between meals, and I feel off. It's not fun. When I started to use MyPlate on livestrong.com to track calories, I realized I wasn't getting enough and was able to adjust and keep my weight even. Just remember if you increase activity at all, you have to eat even more. Disccovered that after a couple of trips when I lost too much. (Oh, disclaimer: my husband's company runs livestrong.com.)

Since you're young, you may bounce back quicker. Just eliminate ALL chances of CC. Ask a friend to help wash all your cabinet doors, shelves, counters, fridge, pantry, etc. Toss all suspicious cookware. Clean the inside of your car if you used to eat it in. Be very careful to never touch your mouth at the grocery store, at a restaurant, near the food court of a mall, and so on. Wash your hands after coming home. All of this is a pain and not fun to learn. But it becomes second nature. And it's worth it!!!! Instead of 43 going on 63, I feel like I'm 20 years younger. But it took 7 months to get here.

[GFinDC]

You will probably feel better without any processed foods for now. But coffee on cereal? Eww! There are alternative milks available in many stores. Almond milk or Hemp milk are usually sold in boxes on the store shelves, not refrigerated. There are also soy milks but I wouldn't use them if I were you. Most mayo has soy in it, there are only a few that don't. I do eat the gluten-free corn Chex but not any of the other Chex, they don't agree with me.

It might help to take some probiotics every day. Most have some dairy in them but some don't have any. Digestive enzymes may help also.

Limiting sugar and caffeine can help your GI system get back in a more stable condition too. At least while you are getting used to the diet.

Think about eating simple meals without a lot of spices and ingredients.

And be prepared for it to take a while as it usually does.

[Diane-in-FL]

Don't the corn tortillas have flour in them?

[Lisa]

Don't the corn tortillas have flour in them?

You need to read the labels. The corn tortillas that I buy don't.

[heidi g.]

corn causes bloating because they are hard to digest. try eating corn on the cob and when you use the bathroom 2-3 days later (thats how long itusually takes to come out) and if you see peices of corn your not able to digest them. onions cause acid indigestion which cause bloating. So does garlic. Peppers can be hard to digest. Eggs can cause gas. Rough meats such as pork and ground beef can also cause problems because your intestine is damaged therefore fiber has a hard time pushing it through the intestine. Coffee is also a big NO NO. you have to listen to your body. It takes alot of self control to eat healthy. Eggs for me cause bloating and cramps and gas. So does corn. Some days my stomach sticks out and i look pregnant. horrible :/ If you have to eat dairy eat small amounts and take a digestive enzyme called papaya tablets. works wonders and tastes great. I would also eat rice throughout the day because it does not hurt your stomach and its easy to break down. Also try taking an amino acid called L-glutamine it helps heal the intestine. Bananas also coat the intestine so i would eat one of those in the morning. You wont feel 100% better but diet is most definitly the way to control your symptoms. again, sorry for the mispelling and punctuation errors im typing on a very difficult phone i do not yet understand how to use