Doc Says No, I Say Yes

[crimsontopper]

Go to the Dr. on monday and he says i tested neg. ive been gluten free since sunday. tonight i accidently drank kool-aid with maltodextrin in it. lets just say the past few minutes havent been pleasant. what do you say? i guess i got a heavy dose cause the reaction was less than 5 mins to the unpleasant feeling in my tummy and 15 mins to the potty. is that a typical reaction time?

[mamaw]

In the US maltodextrin is considered gluten free. You could be having an allergic reaction but I don't think a gluten response if you live in the US.

Also you may not be celiac but you could be gluten intolerant or sensitive. Either way the outcome is the same--- the gluten free diet.

Reaction time to ingesting gluten is different for every person. One thing with celiac/gluten sensitive , we do not respond the same way every time or like everyone else would react.... WE are unique!!!!!!

Remember gluten can aslo be hidden in such things as soy sauce & malt products. Actually we live in a gluten filled world.....

blessings

mamaw

[ang1e0251]

I don't respond that quickly to gluten but everyone's different. I find myself drinking a lot of Koolaid this summer and haven't had a problem with it. I wonder if you could be reacting to the food dyes.

[Lisa16]

Consider too that it might be the food coloring or the sugar you sweetened it with.

Food colorings (reds and yellows) get me and it is fast (less than 20 mins.)

Also, if you haven't been gluten-free very long, it is possible your sugar is contaminated. If you baked a lot and used a cup measure to get flour and then put it in the sugar jar to get a cup of sugar, you will need new sugar.

I hope you figure it out. In the meantime, I sure wouldn't drink anymore kool aid if I were you.

[Gfresh404]

If you are in fact gluten intolerant, my guess would be that it is just a delayed reaction from consuming gluten at an earlier time.

I do not want to sound like I am doubting you but please do not limit yourself to just a diagnosis of Celiac disease. It is important to rule out every thing else first. What makes diagnosing gluten intolerance so difficult is that is a diagnosis of exclusion. You must test negative for everything else first, including Celiac disease. Celiac is also difficult to diagnose because the symptoms can mimic those of other diseases and can be so broad and varied within each individual.

Even if the test for Celiac is negative, you could still very well be gluten-intolerant. It is virtually the same thing except the damage to your small intestine is not far enough along in gluten-intolerance. I myself for example, tested negative for almost every digestive disorder. I tested negative for Celiac 3 different times, 2 blood tests and even a biopsy.

I'm not saying you do not have it, I am just saying keep an open mind. And I apologize if I offended you in anyway, my general practitioner did not believe me either.

[crimsontopper]

oh yeah, i also ate cheetohs at the same time. i just dont know what to do, ive been so sick for so long. not as long as many people on here, but its long to me. i almost want it to be celiac just so i know what it is and can treat it. when i found out it runs in my family and i researched it and i fit nearly all the symptoms and then i stopped feeling so bad when i stopped eating gluten, it was like a weight off my shoulders cause i knew what was wrong with me. i dont want it to be celiac, i just want it to be something. not knowing is sooo scary. this whole past year has been a health roller coaster. ive had a pinched nerve, kidney stones, food poisoning, and then just regular seasonal allergies. i just want this pattern of sickness to be over. i want to know what it is, fix it and be done. if i cant eat gluten thats fine, ill deal with it. if its something else, thats fine too, ill deal with it. i just want to know. i dont want to have to go to bed wondering how bad its going to be the next day. i dont want my wife to have to worry anymore. its not fair to her. what else is there that causes these symptoms? extreme fatigue, vomiting, the runs, gas, bloating, stomach pain? if anyone knows please tell me and ill bring it up with my doc. i checked out lyme, but i dont really fit any of the neurological symptoms. im just at a loss. celiac fits but maybe something else does too. i dont know.

[Lisa16]

If you have been sick for a long time, you might want to consider that a diet featuring cheetos and kool aid may not be a very healthy thing to do for yourself.

[crimsontopper]

If you have been sick for a long time, you might want to consider that a diet featuring cheetos and kool aid may not be a very healthy thing to do for yourself.

i come here for help, not to be flamed for having a snack. thanks for the encouragement

[JNBunnie1]

i come here for help, not to be flamed for having a snack. thanks for the encouragement

Crimsontopper, this IS help. Lisa is right-Cheetos and Koolaid aren't good for anyone ever, especially sick people. A lot of times, people who are healing from gluten damage just can't handle that kind of sugar/junk food overload.

As to whether you got glutened by these foods- It's more likely that your hands weren't clean when you ate the cheetos, or the sugar was cross-contaminated like someone else suggested, or maybe you used a wooden stirring spoon for your Koolaid that was used for something gluteny. Or your system doesn't like red food dye. I don't eat Cheetos, so I don't know if they're safe.

It sure sounds to ME like you have a gluten intolerance/ Celiac issue, since you describe feeling so much better going gluten free. If that's the case, remember that a good number of people on this board tested negative repeatedly, went gluten free anyway, and got better. I wouldn't put all your faith in your doctor.

[Darn210]

My daughter started reacting to blue food dye right before she was diagnosed and it was a fairly immediate reaction. She continued to react to it even after she was gluten free . . . now she can tolerate "some" . . . she may even be able to tolerate a lot, but I don't let her have too much in any one sitting because frankly I don't want to clean up blue vomit anymore.

Some people also react to the MSG which is in cheetos. MSG is OK from a gluten standpoint, some people are just sensitive to it. A good alternative to cheetos is Tings (Crunchy Corn Sticks) from Robert's American Gourmet . . . gives you the cheeto fix and it doesn't have the chemicals and dyes in it . . . and no orange cheeto fingers to wipe on your pants when you're done.

[crimsontopper]

Crimsontopper, this IS help. Lisa is right-Cheetos and Koolaid aren't good for anyone ever, especially sick people. A lot of times, people who are healing from gluten damage just can't handle that kind of sugar/junk food overload.

As to whether you got glutened by these foods- It's more likely that your hands weren't clean when you ate the cheetos, or the sugar was cross-contaminated like someone else suggested, or maybe you used a wooden stirring spoon for your Koolaid that was used for something gluteny. Or your system doesn't like red food dye. I don't eat Cheetos, so I don't know if they're safe.

It sure sounds to ME like you have a gluten intolerance/ Celiac issue, since you describe feeling so much better going gluten free. If that's the case, remember that a good number of people on this board tested negative repeatedly, went gluten free anyway, and got better. I wouldn't put all your faith in your doctor.

i dont make my diet consist purely of junk food and sugar water. i hadnt eaten in about 4 hours, i was hungry, i felt fine so i ate something that i enjoy eating. im sorry i had a mental lapse at not being able to handle gluten, geez. im the one in pain paying for it. i just wanted an opinion. btw, we use a dedicated scoop for the sugar, plastic stirring spoons and a dedicated koolaid container. and i had just washed my hands cause i just loaded the dishwasher. i was hungry and im not used to being gluten free. my bad. i made a mistake. im a grown man and i dont need a lecture about what is good for me. usually my snacks are peaches, oranges, rice cakes, things like that. i just wanted a little junk food. im not an unhealthy person, i frequent a gym, play sports when time allows. i feel like i came here for help and instead of suggestions and others experiences, i get berated because i had a snack. im not a moron, i know whats healthy and what it isnt. thanks guys, i guess ill try to find another forum that has people that will lift people up and not bring them down.

[crimsontopper]

My daughter started reacting to blue food dye right before she was diagnosed and it was a fairly immediate reaction. She continued to react to it even after she was gluten free . . . now she can tolerate "some" . . . she may even be able to tolerate a lot, but I don't let her have too much in any one sitting because frankly I don't want to clean up blue vomit anymore.

Some people also react to the MSG which is in cheetos. MSG is OK from a gluten standpoint, some people are just sensitive to it. A good alternative to cheetos is Tings (Crunchy Corn Sticks) from Robert's American Gourmet . . . gives you the cheeto fix and it doesn't have the chemicals and dyes in it . . . and no orange cheeto fingers to wipe on your pants when you're done.

thank you janet, for the advice. ill check out tings. any advice on where to find them? and is roberts american gourmet a gluten free brand?

[JNBunnie1]

i dont make my diet consist purely of junk food and sugar water. i hadnt eaten in about 4 hours, i was hungry, i felt fine so i ate something that i enjoy eating. im sorry i had a mental lapse at not being able to handle gluten, geez. im the one in pain paying for it. i just wanted an opinion. btw, we use a dedicated scoop for the sugar, plastic stirring spoons and a dedicated koolaid container. and i had just washed my hands cause i just loaded the dishwasher. i was hungry and im not used to being gluten free. my bad. i made a mistake. im a grown man and i dont need a lecture about what is good for me. usually my snacks are peaches, oranges, rice cakes, things like that. i just wanted a little junk food. im not an unhealthy person, i frequent a gym, play sports when time allows. i feel like i came here for help and instead of suggestions and others experiences, i get berated because i had a snack. im not a moron, i know whats healthy and what it isnt. thanks guys, i guess ill try to find another forum that has people that will lift people up and not bring them down.

It sounds to me like you didn't read my whole post. I wasn't trying to bring you down, like you said, it was a suggestion. There are people on the board who, while healing, can eat nothing but fruits, vegetables, meats and nuts. They can't even have any grains, sometimes for the rest of their lives. I'll copy/paste the part of my post that didn't seem to offend you!

"As to whether you got glutened by these foods- It's more likely that your hands weren't clean when you ate the cheetos, or the sugar was cross-contaminated like someone else suggested, or maybe you used a wooden stirring spoon for your Koolaid that was used for something gluteny. Or your system doesn't like red food dye. I don't eat Cheetos, so I don't know if they're safe.

It sure sounds to ME like you have a gluten intolerance/ Celiac issue, since you describe feeling so much better going gluten free. If that's the case, remember that a good number of people on this board tested negative repeatedly, went gluten free anyway, and got better. I wouldn't put all your faith in your doctor."

[happygirl]

If gluten is a problem, and you have only been gluten free for a few days, it may not be one *particular* food that is bothering you, even if it is gluten free. If gluten is the problem, it will take a while for you to heal, and in the beginning, you can still have symptoms because your body isn't back to normal yet. As you know now, maltodextrin in the US is gluten free (or would have to say Maltodextrin (wheat)), so it doesn't sound like what you ate had gluten in it. Just sounds like, if gluten is the problem, your system is still having a tough time.

Hang in there!

[Darn210]

thank you janet, for the advice. ill check out tings. any advice on where to find them? and is roberts american gourmet a gluten free brand?

They say they are gluten free on their website (under "nutrition"). Here is what you'll be looking for:

Open Original Shared Link

This is the same company that makes Pirate Booty which is a little more well-know . . . thought I might mention it in case you have heard of it. Now, around here, I can find the Pirate Booty in many grocery stores but not the Tings. My nearby Krogers doesn't carry Tings but one across town does. So you might get lucky . . . first just check at your local store in the health food area. I usually get mine at Whole Foods or another (local/non-chain) health food store because they are more convenient then the Krogers that's 30 minutes away.

And on a side note . . . Sometimes it's hard to interperate tone in a written post. Members on this board really do want to help. Many have been right where you are and are speaking from experience. Life styles vary greatly too. Some members on this board wouldn't go near a fast food restaurant. I, on the other hand, think it's OK once in a while. I'm sure there are others that go quite often. All-in-all, the diversity in perspectives is great . . . and valuable. You don't get to pick who answers your post, so lifestyle choices may not mesh. You are the only one here that has all your history/background - you are the one that gets decide which advice you follow . . . just leave the rest on the table so-to-speak.

[crimsontopper]

They say they are gluten free on their website (under "nutrition"). Here is what you'll be looking for:

Open Original Shared Link

This is the same company that makes Pirate Booty which is a little more well-know . . . thought I might mention it in case you have heard of it. Now, around here, I can find the Pirate Booty in many grocery stores but not the Tings. My nearby Krogers doesn't carry Tings but one across town does. So you might get lucky . . . first just check at your local store in the health food area. I usually get mine at Whole Foods or another (local/non-chain) health food store because they are more convenient then the Krogers that's 30 minutes away.

And on a side note . . . Sometimes it's hard to interperate tone in a written post. Members on this board really do want to help. Many have been right where you are and are speaking from experience. Life styles vary greatly too. Some members on this board wouldn't go near a fast food restaurant. I, on the other hand, think it's OK once in a while. I'm sure there are others that go quite often. All-in-all, the diversity in perspectives is great . . . and valuable. You don't get to pick who answers your post, so lifestyle choices may not mesh. You are the only one here that has all your history/background - you are the one that gets decide which advice you follow . . . just leave the rest on the table so-to-speak.

thanks for the link. we have a kroger near by and a whole foods place an hour away. so ill check the kroger first. this is a lot of learning, itll just take time. and youre right it is hard to interpret tone on the internet. i felt like the grammer used in those posts was of admonishment rather than support, and entirely unnessecary. i really didnt want to get into an argument or talked down to. i really needed people like you to encourage me and give me helpful advice. thank you so much.

[climbmtwhitney]

Crimsontopper,

Have you ever considered the dairy in the Cheetos? Lots of folks here also have trouble with either the lactose in dairy (the milk sugar) or the casein in dairy (the milk protein). It can cause the symptoms you described. We only found out about our casein intolerances AFTER we went gluten free. Just a thought. Hope you're feeling better!

Jillian

[JNBunnie1]

thanks for the link. we have a kroger near by and a whole foods place an hour away. so ill check the kroger first. this is a lot of learning, itll just take time. and youre right it is hard to interpret tone on the internet. i felt like the grammer used in those posts was of admonishment rather than support, and entirely unnessecary. i really didnt want to get into an argument or talked down to. i really needed people like you to encourage me and give me helpful advice. thank you so much.

Wow. Being a student of the English language, I thought I was being very careful with my grammar. I honestly thought advice about food was what you were after. Perhaps you could share with me what part of my post was argumentative or took an admonishing tone, so I can avoid doing so in the future.

[Mtndog]

Just wanted to add that I have been gluten-free for over 4 years and even though Cheeto's are gluten-free, I get sick EVERY time they eat them. I don't know why (Hershey's chocolate does the same thing so no more Reese's.

It stinks because I love Cheeto's and Reese's but not worth barfing over. I suspect it's either an oil or a food coloring.

I found when I first went gluten-free I was super sensitive to everything and many times thought I had been glutened even though what I ate was gluten-free. It happens much less now but Cheeto's do it to me EVERY time .

[JNBunnie1]

Just wanted to add that I have been gluten-free for over 4 years and even though Cheeto's are gluten-free, I get sick EVERY time they eat them. I don't know why (Hershey's chocolate does the same thing so no more Reese's.

It stinks because I love Cheeto's and Reese's but not worth barfing over. I suspect it's either an oil or a food coloring.

I found when I first went gluten-free I was super sensitive to everything and many times thought I had been glutened even though what I ate was gluten-free. It happens much less now but Cheeto's do it to me EVERY time .

Did you ever try a different brand or those puffy Lay's Natural's Cheeto's? Of course, if Cheeto's made me vomit, I'd have stopped experimenting long ago, so maybe that's a silly question. I wonder what it is that has that effect on you.

[Fiddle-Faddle]

Crimsontopper, when I first went off gluten, I had trouble with dairy, gluten-free breads, and chips that contained maltodextrin. Ironically, I did NOT react as strongly to gluten, at least as far as obvious intestinal reactions were concerned, but I was not tempted to cheat--I'd read enough posts from old-timers here who'd had serious--I mean really serious-- autoimmune diseases as a result of long-term consumption of gluten before they knew that they had celiac.

For the first few months, I did MUCH, MUCH better if I did not eat gluten-free breads, cakes, cookies, pancakes, etc, as well as dairy. The only junk food I was able to eat was Fritos and dark chocolate (which is actually quite a lot of junk food). I was fine with plain baked potatoes and rice, so carbs were not the issue.

Once my intestines healed, I was able to add those other items back into my diet--but I still don't feel great if I overdo it. I figure I should listen to my body.

Please try to be patient with the advice you are given. You've asked for advice, and people are doing their best to be helpful to you. Some people are good at sugar-coating things, and some people are good at giving honest, unvarnished, and sometimes in-your-face truth.

We all react differently--those who like the direct and forthright approach don't always understand that some people don't do well with that approach, and those who like to sugar-coat don't always understand that some people feel that that dumbs things down. Not everyone is going to phrase things the way you like; not everyone has the time to stop and analyze how each word might affect someone.

Hang in there, and who knows--in a year, you might be the "old-timer" here, giving advice to newbies!