A Little Insight From Others

[Megz]

Hello everyone out there in Celiac World

I'm very very new to this. I'm still waiting for my blood test to come back next week but my first gluten-free escapade was phenomenal. As the weeks go by I'm getting back into my regular schedual (school, dance teaching, theatre choreography and running a small business) and eating right is getting harder. I'm packing fresh fruit, yogurt, rice cakes and picking up chicken (swiss chalet if my wallet is feeling generous) on days where i'm not home to eat.

Here's the thing, I'm really starting to feel sick a lot. I'm trying to be really good about cross-contamination, reading labels and asking lots of questions. I ate some rice cakes and a banana one morning and was in bed sick all day afterwards. I get dizzy, faint, headache, sweaty (with a really gross smell) my stomach hurts, the runs. If i can find a bed I 'pass-out sleep' where I'll literally sleep for hours and hours and not wake up or realize how much time has passed or remember anything 20 mins before sleeping.

I'm really getting frustrated, it seems no matter what i do i'm sick. I can't afford to slip back into my anxiety (which is happening) and my iron is all over the place. I don't know what else to do, I'm scared to eat anything for fear of reaction.

Any help, resources, advice, or personal experiences would be so welcome right now.

Thank You

Megan

[Lisa]

Megan:

Welcome to the Board. I am sorry that you are feeling ill.

Many people here will not eat Quaker Rice Cakes due to cross-contamination and they have made many ill. Lumberg Rice Cakes are much better. Gluten can hide everywhere.

Yoplait Yogurt is gluten free (except the ones with cookies and crumbs)

The diet is very difficult in the beginning, but there really is a light at the end of the tunnel.

I am sure others will post, and I do hope you will feel better soon.

Lisa

[snapple]

Hang in there! As you get more comfortable with food labels, it will get easier. Also, I noticed that the less "contaminated" food that came into my house, the better I felt. As time goes on, you will become more familiar with your body's reactions to specific foods and you will learn what food combinations work for you. Your body is just working itself out, it will regulate. It will probably take a little time, but you will start feeling better on a regular basis.

Kate

[Fiddle-Faddle]

Some of the prepared rotisserie chickens and deli meats (even deli tuna salad!!!) have wheat starch, soy sauce (most brands contain wheat), or bread crumbs hiding in them.

It took me months to find out that many things that I thought were gluten-free were not (like most cereals, even Corn Flakes and Rice Krispies). The tuna salad was the big surprise for me, though.

Hang in there! Hope you feel better.

[Ursa Major]

It could be the rice cakes, for more than one reason. If you ate Quaker rice cakes, you probably got glutened. On the other hand, maybe you can't tolerate rice. Is that a possibility for you?

Rice makes me just as sick as gluten, plus it makes me EXTREMELY sleepy. When I tested rice a year ago (after not eating it for four months), I went to bed at 10:00 that night, and didn't wake up until 3:00 PM the next day! I thought my clock had stopped. Plus, it gives me a stomach ache and diarrhea, and makes my joints ache and my knees and feet give out on me.

So, it could just have been that you ate contaminated rice cakes, or you might be intolerant to not just gluten. Rice is a grain, and I can't tolerate any grains at all.

[Cruiser Bob]

Megan, I went through similar issues about a year ago, after being gluten-free for 5-6 years now. I had to eat every 3 hours or so, or I got dizzy, my body temps were all over the place, it was not fun. I'm now at a point where I can stretch meal times, but if I don't eat often, or the proper foods I pay. Not to overwhelm, but you may also consider dropping dairy and eggs, at least for a little while, while your insides heal up a bit. I also started about 2+ years ago having a 6oz. glass of allow juice first thing in the morning, and taking my vitamins on a regular basis.

If you dance, you need energy food - protien. My kids both eat way more than I do and are both skinny/strong from dance. Look into finding some good beef jerky (brown sugar recipe, not soy recipe). All I know is I always drive around with a bag full of food. The bumblebee bars and some of the other gluten-free pre-packaged bars (Glutino) are edible and actually sometimes tasty.

Bob

[flowergirl]

Megan, you poor thing. What you describe is exactly what I get when I eat the things I'm intolerant to. (See my signature) The dizzy, faint, sweaty feeling, the stomach hurts and green runs, the sleepiness, the lose track off time/memory loss and fear that anxiety may escalate any time soon thing. You've described me to a t.

All advice I can give you is that which have worked for me: Start with an extreme elimination diet and work yourself up to where you are heathy and comfortable. Then you are able to think clearly, have good judgement and make decisions. This is where I am at this moment and it feels great. As you can see from my signature, my current diet is VERY LIMITING and I have made some serious sacrifices. But like I've said before. At the moment I am looking at the whole situation from a good perspective of health and clear thinking and it's been worth it. In fact, it is a priceless vantage point.

I also have a very understanding partner who had to suffer with me all these yrs. Our plan is to stay this way for a few months, build health, eliminate deficiencies and then slowly, with the help of a diary, reintroduce the nasties one by one and write it all down. I'm actually scared of doing this but this is our plan. It is amazing how able you can be to make good decisions and judgement when you have good/tolerable health.

As for getting more protein for energy with all your activities, try some quinoa. It's an excellent source of protein, calcium, magnesium, iron etc. I will be thinking of you. You may also investigate the link between hypoglycemia, high GI foods and celiac. See if you can find the book: Living Gluten-Free for Dummies by Danna Korn and see page 95 - 109. It will explain to you why you feel dizzy and faint after eating processed food meals and why your body is not performing the way you expect. May it be as life changing to you as it has been for me.

Best to you,

Flowergirl

[Viola 1]

Hello everyone out there in Celiac World

I'm very very new to this. I'm still waiting for my blood test to come back next week but my first gluten-free escapade was phenomenal. As the weeks go by I'm getting back into my regular schedual (school, dance teaching, theatre choreography and running a small business) and eating right is getting harder. I'm packing fresh fruit, yogurt, rice cakes and picking up chicken (swiss chalet if my wallet is feeling generous) on days where i'm not home to eat.

Here's the thing, I'm really starting to feel sick a lot. I'm trying to be really good about cross-contamination, reading labels and asking lots of questions. I ate some rice cakes and a banana one morning and was in bed sick all day afterwards. I get dizzy, faint, headache, sweaty (with a really gross smell) my stomach hurts, the runs. If i can find a bed I 'pass-out sleep' where I'll literally sleep for hours and hours and not wake up or realize how much time has passed or remember anything 20 mins before sleeping.

I'm really getting frustrated, it seems no matter what i do i'm sick. I can't afford to slip back into my anxiety (which is happening) and my iron is all over the place. I don't know what else to do, I'm scared to eat anything for fear of reaction.

Any help, resources, advice, or personal experiences would be so welcome right now.

Thank You

Megan

It sounds to me like you are not getting enough protien or fat in your diet. In fact, if that is all you are eating, it's not likely enough calories for an active person either.

I realize it is difficult starting a gluten free diet, but you need to keep it as balanced as possible to get all the esentials. Fruit is great ... you are getting your fibre, and most of the vitamins. But you need the protien, fat and minerals as well.

And yes, unfortunately Quaker does have a very bad reputation for cross contamination.

Sure hope you are feeling better very quickly.

[mamabear]

I agree with everyone who weighed in on the apparent lack of protein in your diet. It may also be possible that more frequent, small meal/snacks including protein with your carbs might help. Protein and fat also help to slow down the absorption of starches/sugars. Some of this sounds like hypoglycemic reactions.

[CMCM]

I have found that I am sensitive to a LOT of things, and to multiple mixtures of things. I don't do well at all with most of the gluten free cookies, cakes etc. I feel really really good if I just eat plain meats, veggies, fruit. But you've got to be careful as heck. I bought a rotisserie chicken at the market several times, and always got sick from it. I believe they inject it with flavor ingredients which must have some sort of gluten in them. Rice seems to make me sick, too....plain rice not so much, but other things using rice. I think the tapioca flour bothers me too. You have to be a real detective, but the best thing is to start really really simple and go from there, testing each thing you add.

[jayhawkmom]

I don't really have any words of advice. But, I read your post...and just wanted to wave Hi. I'm a "dance mom" as you can see by my avatar.

This is a frustrating world to live in, no doubt about that.

Best wishes to you.

[debmidge]

Some of the prepared rotisserie chickens and deli meats (even deli tuna salad!!!) have wheat starch, soy sauce (most brands contain wheat), or bread crumbs hiding in them.

It took me months to find out that many things that I thought were gluten-free were not (like most cereals, even Corn Flakes and Rice Krispies). The tuna salad was the big surprise for me, though.

Hang in there! Hope you feel better.

to add to this, even restaurant tuna salad could have bread crumbs in it. I was told this by a woman whose family owned some diners here in NJ. They use the crumbs to stretch the salad out in order to make more money.

[draeko]

Hi Megz,

Sorry to hear you feel that way..but I am also glad because I am going thru the exact same thing. Same symptoms too.

I was diagnosed at the end of Nov. 2006 and I am still not feeling all that better. One thing I would like to let you know is that I did get a reaction from Swiss Chalet's chicken. I'm sorry to dissapoint you. I also read your other post and thank you for contacting Tim Horton's you made my day. lol

Hope you feel better soon and keep me posted if you find any good stores/doctors/books in the area!

Melanie

[jayhawkmom]

to add to this, even restaurant tuna salad could have bread crumbs in it.

I just noticed this in deli tuna and egg salad the other day!! I was hungry for egg salad and picked up a 1/4 in the deli. As I was walking toward the checkout, I happened to glance down at the ingredient label and saw "contains wheat." I'm thinking.... "What? It's egg salad!!!" I went back through and sure enough, there were bread crumbs in the egg salad. I went back and looked, crumbs were in the egg salad AND the tuna salad.

*whatever!!*

[gabby]

Hi,

With great sadness, I admit that I also have trouble with Swiss Chalet chicken. You cannot eat their french fries because they are not gluten-free. Also, beware of their salad dressings. And the salad too...mostly because of cross contamination from the buns.

Have you noticed if you are reacting to dairy products at all? this was a problem for me once I went completely gluten-free. Until your intestines can heal up, your body may have trouble digesting dairy products. Keep a food diary and see how you feel after eating things like yogurt or having coffee/tea with milk.

I often tell people that I had to learn a new language: I call it Labelese, meaning I had to learn how to read labels. Not just to look at the listed ingredients, but to understand what the terminology meant. As one scientist explained to me a while back: consumers think food labels are there to list ingredients, but in the food business, labels are there as legal documents.

hope this helps, and hope you feel better soon!

[gfpaperdoll]

Wanted to second the Lundberg Rice Cakes & Rice Chips are the way to go. Also, did you get the peanut butter from a fresh jar or from a jar that someone had stuck a knife in it while making a wheat sandwich or peanut butter on wheat crackers? Those teeny little specks are enough to make you sick.

For chicken, I cook up a bunch then freeze in single serving portions, easy to grab a baggie from the freezer & by the time you are ready to eat - it will be defrosted.

[moonlight]

...technical problem with my post... my laptop got bad.

[moonlight]

Hi,

I am not celiac, but my husband has gluten intolerance - He had to quit many things, not because he was allergic to them but because his intestines were not able to digest them, they were in bad shape. He was diagnosed this summer, beginning of July..

Probably, you dont even have the energy to fix your gluten-free meal, or to read the labels....I am sorry, I hope you feel better soon. Here is what we did - it worked very well for him, and still we are following it.

- He completely avoided night shades (eggplant, potato, pepper, etc), legume, soy, milk/cheese-cessain (his doctor told us to avoid it for one year), yam, tomato, corn/corn gluten, yeast, xantac gum, caffein, any type of soft drinks, egg, lemon, vinegar, all sorts of processed foods. Among these things, he now eats tomato, potato and lentil but in moderation.

- We even cut meat from his diet, slowly introduced fish (cod, tilapya, salmon) and shrimp first, than chicken and turkey, finally red meat. He always eats a balanced meal involving some rice, veg and meat, not only meat.

- He does not eat raw vegetables and fruits (we always cook them), since they cause gas/bloating, etc. if he eats, he cannot sleep, if he cannot sleep the next day becomes difficult.

- His safest food at the very early stages: (a mixture of rice,zuccine, carrots, olie oil, salt, some dill - we cooked them all together.

- We discovered Quinva, it gives him energy (the simplest way to cook it is like rice - you can use a rice cooker). When he was not able to eat meat, his energy level was very low.

- we are cautious about some other things: toothpaste, sugar, some vitamins have gluten, also soaps and shampoos, tea bags, paper towels.

- Cat food/litter

I hope these helps, good luck!

[blueeyedmanda]

Hi, and welcome to the board.

It is great to see how careful you are being, It was a few months before I knew about the CC issue.

You seem to understand the diet and that is great.

It does take time for your body to react to the changes. It varies from person to person. Keep with the diet. One day everything is going to flow and you will be feeling better soon.

[mollyacampbell]

I am still struggling with diet and symptoms, Megan, but I have to agree with Flowergirl and the Paleo diet. The best I've felt since I first started feeling sick was when I strictly adhered to the Paleo diet. It's not easy, at first, especially if you have any social life whatsoever, but I think it's worth trying. You could maybe try to eliminate one thing at a time (on top of the gluten-free diet), like start eliminating grains and then dairy. I'm starting to think that right after diagnosis you really have to "shut it down" gastrointestinely-speaking, so that you can heal. I myself am def. still having symptoms (talked to the gastroenterologist today, in fact) but I will just say that the paleo diet has made me feel the best in recent memory. You better like the produce section at your local grocery store, though!! Whole Foods basically owns me.....

[tbj]

Hello everyone out there in Celiac World

I'm very very new to this. I'm still waiting for my blood test to come back next week but my first gluten-free escapade was phenomenal. As the weeks go by I'm getting back into my regular schedual (school, dance teaching, theatre choreography and running a small business) and eating right is getting harder. I'm packing fresh fruit, yogurt, rice cakes and picking up chicken (swiss chalet if my wallet is feeling generous) on days where i'm not home to eat.

Here's the thing, I'm really starting to feel sick a lot. I'm trying to be really good about cross-contamination, reading labels and asking lots of questions. I ate some rice cakes and a banana one morning and was in bed sick all day afterwards. I get dizzy, faint, headache, sweaty (with a really gross smell) my stomach hurts, the runs. If i can find a bed I 'pass-out sleep' where I'll literally sleep for hours and hours and not wake up or realize how much time has passed or remember anything 20 mins before sleeping.

I'm really getting frustrated, it seems no matter what i do i'm sick. I can't afford to slip back into my anxiety (which is happening) and my iron is all over the place. I don't know what else to do, I'm scared to eat anything for fear of reaction.

Any help, resources, advice, or personal experiences would be so welcome right now.

Thank You

Megan

[tbj]

Hi there... I feel so sorry for you because you describe so many of the same things that I'm going through! It looks like you've been getting lots of good advice. You mentioned the anxiety that you go through, and I just wanted to respond to that. I also have terrible anxiety whenever I get glutened. Sometimes so badly that I just freeze, feel dizzy and faint, and can't concentrate. It's a terrible feeling, as I've never had any of those symptoms before the Celiac disease diagnosis. I used Xanax temporarily, and was put on Paxil (20 mg) and am doing much better. If you haven't tried something for the anxiety already, I would recommend it. Just dealing with the diagnosis can make you crazy! Good luck and I hope things improve for you soon!