Gluten Intolerance Plus

[darlindeb25]

I am celiac/gluten intolerant. I am intolerant of all grains. I actually wonder if it's all grains, or cross contamination. This is something many of us deal with on a daily basis.

Have any of you ever been to an elevator, where grains are taken after harvesting? The grains are all put into bins. These bins are used for all grains, at different times. When navy beans come in, they go into the bins, when it's corn, same thing, soy beans, wheat, oats, rye....they all go into the same bins at different times. They sweep up the floors around the bins, into the bins. I grew up on a farm, we played in the wagons, on top of the grains. When we harvested corn, we used the same harvester, called a combine. Yes, they use different heads on the harvester, but it all goes into the same bin on the harvester, and no, they do not get washed out. After wheat comes the navy beans, then soy beans, then the corn, and on and on. Cross contamination begins there.

Testing for ppm (parts per million) of gluten is only done to a level of 5ppm. So far, they cannot test for less than 5ppm. So conceivably, any gluten free grain can have at least 5ppm of gluten and up to 20ppm, and still be called gluten free. For some of us, this is still too much. Explore this website, for the Gluten Intolerance Group of America, and you will find this fact is verified by them: Open Original Shared Link

I do not eat any grains, none. No wheat, no barley, no rye, no soy, no corn, no rice, no tapioca, no oats, and none of the others like quinoa, bean flours, and the like. IF I do indulge in a cookie or two, I can count on tummy upset for at least 2 weeks if not more.

I eat all whole foods, nearly nothing processed. I do still eat peanut butter (Skippy Natural), and Dole Fruits in the single serving cups, in it's own juice. The sugar I get in my diet, is natural sugar from the product itself, like apples, pears, and such. I eat chicken breast, and occasionally fish, no shellfish, no red meats, no cruciferious veggies, no nightshades. I eat green beans, peas, and carrots, always fresh or frozen, never from cans. I also eat apples, pears, peaches, plums, and occasionally a berry or 2. I drink decaf Columbian coffee, use SoDelicious Coconut Milk, and Splenda...yes, I use a sweetener. Walnuts and golden raisins.

I take a good multiple vitamin, Vit D, Vit B12, Easy C, Iron, Folic Acid, and Wellbutrin. The Wellbutrin is my neuro's idea, thinking I have too much anxiety in my life, causing muscular headaches.

Oh, and I do not use any products on my body that contain wheat, rye, barley, oats, corn, or soy. I also react to them.

Some of us are much more intolerant to gluten than others. It's a fact of life that we must learn to live with. Any one interested in this discussion, come on in.

[belaugh86]

I am SO glad I found this post because I was going to post my own topic regarding grain/carbohydrate intolerance and wanted to get some feedback on this very topic!

You said you don't eat any grains, but do you eat milk or dairy products? If you are celiac I suppose you can't have milk. I was tested for celiac disease but came back negative, even though since I cut wheat and gluten out of my diet I have felt 'more normal' than I was feeling about a year ago.

I have a really hard time digesting any grains also. I found out that I did much better without them incidentally when I went on the South Beach Diet, which cuts out all grains for the first two weeks. I was suddenly able to digest food properly, wasn't experiencing as much stomach pain, and I was not bloated or experiencing the headaches/dizziness I feel so often.

I keep a pretty detailed food journal, mostly for weight loss, but today I noticed that immediately after I ate a piece of processed cheese I had itchy spots up and down the inside of my arm that came out of nowhere. I am considering cutting out dairy products for this reason, because it's the only thing I can trace it back to. Other than the cheese I ate an apple with all natural peanut butter which I don't think is the problem; I've never reacted to peanuts before.

Do you drink rice milk if it is certified gluten free? When you say you don't eat grains at all is it because of your reaction to them personally? Even if it's labeled gluten free you still have a reaction?

I have had the same reactions and was recently considering cutting out all grains, dairy, soy and rice products. It is incredibly hard and I have a really hard time going out to eat, if I do decide to eat out I hardly ever go home feeling normal. Just recently I took my boyfriend out to dinner for his birthday and up popped itchy spots all over my right hand right after dinner.

Phew... I have so many questions I want to ask!!!! I feel like I am rambling! I'd really like to know more about your reactions to grains. I think I have the same type of reactivity.

[ENF]

How about magnesium supplementation, with calcium? Of course, you may not need it since your diet is so healthy, but most people do, including non-celiacs. Among other things, magnesium makes my heart's mitral valve prolapse (murmer) less annoying.

Because I have reason to believe that cow's milk casein is bad for me, I've been dairy-free for several years. Tonight I had some goat's milk, with no bad reactions at all. If all goes well with it over the next few days, I am going to try introducing other goat's milk products into my diet as well, such as yogurt and cheeses.

[darlindeb25]

ENF, thank you for saying my diet is very healthy. When people ask me what I eat, I tell them I actually have a very healthy diet, in my opinion. I haven't added magnesium, for one reason, of all my minerals, my magnesium actually is at a good level.

Now BeLaugh...we sound so much alike. Itching from dairy, I never thought about that. I too was getting these itching sessions, only lasting a short time, but itch so bad I would break out in a rash. I have given up dairy, but just recently, and I have been gluten free for 9 years. I decided against rice milk because rice is a grain, and I do react to all grains, whatever the reason. I do honestly believe that all grains have a certain amount of cross contamination. Even though some companies say they only handle the rice, never any gluten products in their facility, unless they grew the rice, and harvested it themselves, then they can't be 100% positive about the rice's safety. Obviously, some celiac/gluten intolerants can handle small amounts of gluten, some of us simply cannot.

I smiled at your apple, cheese, and peanut butter. I have done that for a long time now. Then I decided to give up the peanut butter to see if it was an issue, and found the cheese to be an issue, went back to the peanut butter. Yet I crave peanut butter, so I'm not sure it's good for me.

When you say you don't eat grains at all is it because of your reaction to them personally? Even if it's labeled gluten free you still have a reaction?

Yes, and yes. Because of my reaction to them personally, and yes, even labeled gluten free causes a reaction. Like cookies, crackers, cakes...I react to them all, and for 2 or 3 weeks, not just a day. I do not have time in my life to waste not feeling good for one second more than I need too. I have enough issues, without feeding myself a problem!

I also am dealing with sensory neuropathy, arthritis, sleep apnea, insomnia (which seemed to go away with the removal of dairy), and headaches. My ferritin is low, so I am hoping when it gets back where it belongs, maybe the headaches will go away.

I'm very happy this thread can help others.

[ang1e0251]

I've found I do better with very low grain also. I haven't cut them out completely but I'm not eating them every day as I was. It really cut out the abdominal pain.

Have you tried taking feverfew for your headaches? It really helped my daughter. Cut down on the number of headaches and shortened the duration when they did occur.

[ranger]

I may be wrong, so set me straight if I am, but I read somewhere that Wellbutrin is not gluten-free. Check that out.

[darlindeb25]

Some forms of Wellbutrin may not be, but the generic form I am taking is. My pharmicist is celiac, and she always checks anything I need, and will not give it to me until she has an answer. Thank you though.

[cyberprof]

I am celiac/gluten intolerant. I am intolerant of all grains. I actually wonder if it's all grains, or cross contamination. This is something many of us deal with on a daily basis.

...

I do not eat any grains, none. No wheat, no barley, no rye, no soy, no corn, no rice, no tapioca, no oats, and none of the others like quinoa, bean flours, and the like. IF I do indulge in a cookie or two, I can count on tummy upset for at least 2 weeks if not more.

I eat all whole foods, nearly nothing processed. I do still eat peanut butter (Skippy Natural), and Dole Fruits in the single serving cups, in it's own juice. The sugar I get in my diet, is natural sugar from the product itself, like apples, pears, and such. I eat chicken breast, and occasionally fish, no shellfish, no red meats, no cruciferious veggies, no nightshades. I eat green beans, peas, and carrots, always fresh or frozen, never from cans. I also eat apples, pears, peaches, plums, and occasionally a berry or 2. I drink decaf Columbian coffee, use SoDelicious Coconut Milk, and Splenda...yes, I use a sweetener. Walnuts and golden raisins.

I take a good multiple vitamin, Vit D, Vit B12, Easy C, Iron, Folic Acid, and Wellbutrin. The Wellbutrin is my neuro's idea, thinking I have too much anxiety in my life, causing muscular headaches.

Oh, and I do not use any products on my body that contain wheat, rye, barley, oats, corn, or soy. I also react to them.

Some of us are much more intolerant to gluten than others. It's a fact of life that we must learn to live with. Any one interested in this discussion, come on in.

I am experimenting with no rice, no gluten-free-flours, no potatoes and no (almost) sugar to see if I can lose the 30 pounds that I gained while being sick before diagnosis (gained almost 20 in 6 months immediately prior to diagnosis). The weight is almost all in my stomach, with a flat butt (picture a sick celiac child). I am not able to lose weight just by cutting calories. I'm also doing lots of working out and will add weight lifting in next week for the extra metabolism boost.

What I wonder is if my body is damaged and can't handle carbs due to 20 years of undiagnosed celiac? We'll see if it works. I've got to do something to get rid of the extra weight.

~Laura

[darlindeb25]

I too, can't lose weight by dieting. There isn't anything I can give up anymore. I exercise every morning, and walk most evenings. It's hard work. Most of my weight I would love to get rid of is in my tummy too.

[cyberprof]

I too, can't lose weight by dieting. There isn't anything I can give up anymore. I exercise every morning, and walk most evenings. It's hard work. Most of my weight I would love to get rid of is in my tummy too.

You're killing me Deb...destroying my hope! (Kidding...not your fault.)

I'm having some success now. At least I'm not hungy all the time.

[pchick]

I was just diagnosed gluten intolerant... but 2 weeks before that diagnosis, I started a low carb diet to lose weight. When I found out about the GI, I was excited to try a gluten-free brownie after 2 weeks of being "good". I got immediate heartburn and it's lasted 3 days so far. So I've decided to cut grains altogether... and sugar too. (except natural sugars in fruit).

Thanks DarlinDeb for sharing... I think this thread has really helped me realize all people are different, and some of us really don't need grains at all. I'm trying to stay positive, and motivated to learn a new way of cooking, I have my family behind me too (they are tired of me being sick all the time)... but it's all so new. I feel like I need to take a month off just to read and do some recipe testing.

I feel like a nimrod sometimes for not knowing more about this before... and how hard it is for people with food sensitivities. I guess we all learn sooner or later... just wish it had been sooner before the leaky gut started!

[darlindeb25]

You're killing me Deb...destroying my hope!

Awwwwwwww, sorry, not my intention at all. I do feel, for those of us who are constantly battling, it's always nice to hear someone else is in the same boat. I keep working at it too. Like I said, I exercise every morning since January. It exhausts me, but I keep at it. I was diagnosed with chronic fatigue syndrome in Feb, and then knew, as hard as exercise is, I have to keep at it. I have lost around 30#, and would love to lose 30 more. For probably 6 weeks, I have not lost anything, gained 2, lost them, gained them...yet this morning, I tried on a few shorts that now fit, so at least I am firming up, which is good too. I do hate plateau's though.

As for the feverfew, sorry, I forgot to response to it. I have never tried it, not sure it would help, but will research it. I finally realized my headaches are cervical headaches, as a rule, with many tension headaches from work thrown in.

pchick: I feel like a nimrod sometimes for not knowing more about this before... and how hard it is for people with food sensitivities. I guess we all learn sooner or later... just wish it had been sooner before the leaky gut started!

Never think this way, although we all have. I was very sick for over 20 years, and had no idea why. It's tougher for those of us with so many sensitivities and intolerance's, and often times, people just do not understand. They think we are just faking it, or just afraid of food, and stupid excuse they can come up with other than the possibility that we may just know what we are talking about.

[cyberprof]

Awwwwwwww, sorry, not my intention at all. I do feel, for those of us who are constantly battling, it's always nice to hear someone else is in the same boat. I keep working at it too. Like I said, I exercise every morning since January. It exhausts me, but I keep at it. I was diagnosed with chronic fatigue syndrome in Feb, and then knew, as hard as exercise is, I have to keep at it. I have lost around 30#, and would love to lose 30 more. For probably 6 weeks, I have not lost anything, gained 2, lost them, gained them...yet this morning, I tried on a few shorts that now fit, so at least I am firming up, which is good too. I do hate plateau's though.

As for the feverfew, sorry, I forgot to response to it. I have never tried it, not sure it would help, but will research it. I finally realized my headaches are cervical headaches, as a rule, with many tension headaches from work thrown in.

Never think this way, although we all have. I was very sick for over 20 years, and had no idea why. It's tougher for those of us with so many sensitivities and intolerance's, and often times, people just do not understand. They think we are just faking it, or just afraid of food, and stupid excuse they can come up with other than the possibility that we may just know what we are talking about.

That's great that you've lost 30 pounds. I have lost 7 or 8 but over the last 8 months. Very slow- I'd settle for low and steady but this is just slow.

I too believe that I developed celiac at age 18 so I was undiagnosed for 30 years. (They were testing me for rhuematoid arhtritis when I was 18...docs couldn't understand why I developed arthritis like overnight and so young. But they said the tests were negative.) Back then, I wasn't sick enough not to work or not to have healthy pregnancies but right before diagnosis iwas pretty sick. And I think my metabolism got wrecked.

I have started riding my bike to work now that my youngest has his drivers license and can drive himself to school. Adding weight lifting is next on my adgenda.

What I'm afraid of is that by going grain-free I'll discover that I am intolerant of all grains and will be stuck eathing this way for the rest of my life.

[darlindeb25]

I too believe that I developed celiac at age 18 so I was undiagnosed for 30 years. (They were testing me for rhuematoid arhtritis when I was 18...docs couldn't understand why I developed arthritis like overnight and so young. But they said the tests were negative.) Back then, I wasn't sick enough not to work or not to have healthy pregnancies but right before diagnosis iwas pretty sick. And I think my metabolism got wrecked.

I have 5 kids, each pregnancy was worse. The first was pretty uneventful, the 2nd, I was getting sick at night a few times a week, the 3rd, I got sick even more often, then with the 4th, I was so sick in the beginning, I didn't even know I was pregnant. I had terrible motion sickness, even a rocking chair made me ill. I didn't see a doctor for maybe 4 months, I couldn't ride in a car. I was anemic, taking double iron, and borderline gestational diabetes. I started on birth control pills, and of course, wasn't absorbing them, and became pregnant with my 5th child...she was a wonderful surprise, we had 4 boys. I lost 40# while pregnant with her...thankfully, the kids were fairly healthy. 4 could not drink milk, and were on soy formula for a long time, and my daughter, was born with a malformed hip socket. It's very difficult for me to not blame myself, even though I didn't know I was having an issue with gluten, didn't even know what gluten was then. It would be another 17 yrs before I went gluten free, making the time I definitely had symptoms, 21 years. Of course, when I look back, there were other obvious gluten problems long before then.

I had aches and pains for years. My mom would tell me I was too young to be complaining so much. Around 42, I was diagnosed with carpal tunnel in both hands, my first real diagnosis of neuropathy, I just didn't realize it then. I also had developed Raynauds back then. Sometimes, it seems like some of us have a avalange of problems, all with gluten as the beginning.