Just One Bite?

[bigbird16]

Hi, Y'all!

I've been gluten free for almost 3 weeks now, and I feel a billion times better than I have in years. The biggest change is that almost daily migraines have gone away.

I was very careful over Thanksgiving when I visted with family. Mom was very distressed, however, when she made spaghetti Saturday and I pulled out a package of rice noodles to make my own "spaghetti". She wanted me to at least try it, because it had such a different texture and flavor than regular spaghetti. Eventually I relented and ate a forkful of this special spaghetti.

Within the hour I started getting little auras (hadn't had any for over a week), felt the spot on my head that indicates a migraine in the works start to get tender, and felt the migraine side of my face start to tingle. I felt nauseous, bloated, and irritable. I ignored it, thinking it couldn't possibly be true. By Sunday I developed such a lovely migraine. I haven't eaten anything containing gluten and haven't had another headache since.

Can ONE bite of pasta really be responsible for a reaction? Or is it all in my head? (lol migraine--all in head--hee hee hee)

Thank you!

[Mother of Jibril]

Welcome to the group!

One bite is definitely enough to cause a reaction. And now that you know how you react... I bet you won't be eating any more gluten on purpose!

[Lisa]

It's not the amount of gluten that makes you sick, it's the autoimmune reaction to the gluten which makes your body attack itself.

[Amber M]

Hi, Y'all!

I've been gluten free for almost 3 weeks now, and I feel a billion times better than I have in years. The biggest change is that almost daily migraines have gone away.

I was very careful over Thanksgiving when I visted with family. Mom was very distressed, however, when she made spaghetti Saturday and I pulled out a package of rice noodles to make my own "spaghetti". She wanted me to at least try it, because it had such a different texture and flavor than regular spaghetti. Eventually I relented and ate a forkful of this special spaghetti.

Within the hour I started getting little auras (hadn't had any for over a week), felt the spot on my head that indicates a migraine in the works start to get tender, and felt the migraine side of my face start to tingle. I felt nauseous, bloated, and irritable. I ignored it, thinking it couldn't possibly be true. By Sunday I developed such a lovely migraine. I haven't eaten anything containing gluten and haven't had another headache since.

Can ONE bite of pasta really be responsible for a reaction? Or is it all in my head? (lol migraine--all in head--hee hee hee)

Thank you!

Yes, one bite can do it. I get instant cancker sores or sore mouth while I am chewing it, and a funny feeling like glandular down both sides of my neck. That quick for some. I say I could be a gluten detector. I think you could be too! Then it goes on to all the other symptoms. I find myself holding my breath as I walk thru the deli (bread) area of the grocery store. Now thats probably extreme, but thats how quick it can be!! I hope your mom now realizes and doesn't attempt that again! You just have to say "no." Isn't it wonderful not to have the migraines!

And Welcome to the forum. We are all here for each other! Take care!

[Mtndog]

I'm so glad that going gluten-free has made you feel so much better- especially the migraines. That must be a huge relief!

You won't like my answer to your question (I don't like it!). I reacted to an Amy's meal that contained no gluten. Called the company (it's very small) and they sent samples from the batch to U of Nebraska for testing. I reacted to 33 ppm of gluten. A piece of pasta would kill me!

[dilettantesteph]

The celiac specialist in my GI group says that 0.5 mg is enough to cause a reaction with sensitive people. That is a speck too small to see. Certainly a bite will do it.

[bigbird16]

Thank you very much! I appreciate your responses and the welcome. I sure won't do that again purposely! Wow. It just boggles a little. Yikes about canker sores after one bite (Amber) and being glutened from a "gluten-free" Amy's meal (Mtndog)!

It makes me happy to know that I'm not nuts. My dad recently told me that my birth mother had a wheat allergy and a funny rash that itched, and that I had food allergies as a baby the doctor said I'd outgrow. And that's what prompted me to examine my diet. I seemed to always have tummy troubles. I kept telling my parents when I was a teen that I thought I shouldn't have milk and cheese, because dairy always seemed to mess up my gut. I know lactose intolerance shouldn't just go away, but I eventually was able to tolerate dairy again later in adult life. I've gone to doctors about breathing issues, joint pain, extreme lethargy, tummy troubles, heart palpitations, and migraines that have all gotten gradually worse over the past 10 years. All but the migraine doctor has said there's absolutely nothing wrong. (Migraine doc said, you have migraines with aura; you're just wired this way, and they'll never go away. oh joy). I know the body aches as it gets older; but I'm only 35, and I know I should not hurt this much!

After all of this for so long, I knock wheat and its little friends out of the diet, and all of the troubles are starting to fade away! The joints don't feel so old and achey; I can breathe and keep up better in dance classes; my belly is soft and not bloated; I'm sleeping well with no whacked out dreams; anxiety and cotton stuffing in brain have started to float away; balance is improving; happiness and motivation are returning; and more. (And I know at three weeks, it's very early and not everything will get better quickly. But any improvment over what I have been feeling is a miracle.)

As someone who loves to bake, this is an opportunity I would not have otherwise taken--to explore different flours in my cakes, cookies, and breads and to take on the challenge of making tasty and healthy breads without wheat et al.

Have a wonderful day!

Kat

[zeta-lilly]

Doesn't it drive you crazy when people don't take your condition seriously! I don't think people believe me that it really makes me that sick.

You know it's funny, because I read that other countries have more liberal standards for gluten consumption and labeling products. I can't imagine. I react to tiny amounts of gluten. I ordered a salad at a restaurant once and they almost put croutons on it. No croutons hit the salad, but a couple crumbs fell on it, which I picked off, thinking that would be too small to react to. I felt so sick. It's amazing that you can react to tiny bread crumbs!

[JRock]

Hi Kat,

I was diagnosed with celiac (via biopsy and blood test) a little over a month and a half ago, and (as far as I know) I have been gluten-free since then. To be honest, I was skeptical on the diagnosis, but followed it anyway... my skepticism increased after so many ups and downs with my health over the past few weeks.

Well, I'm a skeptic no more (plus, what are the chances that two blood tests on two separate occasions and one biopsy can be inaccurate?) ... in addition to the science, I was given my proof over the weekend. I had one bite of my husband's taco (he swore it was a corn shell, but we didn't verify what the meat was marinated in) and all evening my stomach and small intestine were grumbling and aching. The next day, symptoms kicked in full force... and wouldn't you know it, I had just bought a lift ticket to spend all day snowboarding. It was not a good day of snowboarding, but I rode with friends, so I was stuck there all day.

At any rate, for some of us, one bite may be a sentence to at least a day of misery and pain. Some of us may react less in the obvious way. It's scary to think about, I actually feel fortunate that I react so strongly. It's not fun, but I know when I've been poisoned, so I know what to avoid.

Jen

[Amber M]

Hi Kat,

I was diagnosed with celiac (via biopsy and blood test) a little over a month and a half ago, and (as far as I know) I have been gluten-free since then. To be honest, I was skeptical on the diagnosis, but followed it anyway... my skepticism increased after so many ups and downs with my health over the past few weeks.

Well, I'm a skeptic no more (plus, what are the chances that two blood tests on two separate occasions and one biopsy can be inaccurate?) ... in addition to the science, I was given my proof over the weekend. I had one bite of my husband's taco (he swore it was a corn shell, but we didn't verify what the meat was marinated in) and all evening my stomach and small intestine were grumbling and aching. The next day, symptoms kicked in full force... and wouldn't you know it, I had just bought a lift ticket to spend all day snowboarding. It was not a good day of snowboarding, but I rode with friends, so I was stuck there all day.

At any rate, for some of us, one bite may be a sentence to at least a day of misery and pain. Some of us may react less in the obvious way. It's scary to think about, I actually feel fortunate that I react so strongly. It's not fun, but I know when I've been poisoned, so I know what to avoid.

Jen

I find it quite amazing as well. I think once you stop for awhile, the system becomes even more sesitive to it, either that or we just forgot how sick we were all the time! At least, now you know with out a doubt although your test results are certainly enough.

[CMCM]

The degree of sensitivity definitely varies person to person. My mom has been glutened by absolutely invisible amounts of gluten, and she got to sick she says she thought she was dying. 12 to 24 hours of this, too, violent vomiting over and over until she was weak, incredible nausea, and so on. So for her, any exposure is a major reaction, seemingly worse with each subsequent exposure. Luckily, this rarely happens. Once she even got glutened from a Whole Foods display where a woman was offering samples of gluten free baked goods. Despite eating a supposedly gluten-free item, she still reacted to something in it. I don't know what amount she reacts to, but it must be infinitesimal. As for me, my reactions vary, although nothing as severe as my mom's. I too can get a canker sore in my mouth almost as I finish eating something. But that doesn't always happen. Sometimes in the past when I deliberately ate something, no reaction. Other times I'll feel sick for a few hours. Other times I'll get a headache. Or a rash. It's different every time, but I'm at a place where I'm now really really careful.

I've read that your body does its best to "tolerate" gluten. It seems for me, the longer I'm away from gluten the greater my loss of tolerance. So I react now to small amounts of something which in the past, when I was eating a small bit of regular gluten, I wouldn't have reacted to as much.

[Amber M]

The degree of sensitivity definitely varies person to person. My mom has been glutened by absolutely invisible amounts of gluten, and she got to sick she says she thought she was dying. 12 to 24 hours of this, too, violent vomiting over and over until she was weak, incredible nausea, and so on. So for her, any exposure is a major reaction, seemingly worse with each subsequent exposure. Luckily, this rarely happens. Once she even got glutened from a Whole Foods display where a woman was offering samples of gluten free baked goods. Despite eating a supposedly gluten-free item, she still reacted to something in it. I don't know what amount she reacts to, but it must be infinitesimal. As for me, my reactions vary, although nothing as severe as my mom's. I too can get a canker sore in my mouth almost as I finish eating something. But that doesn't always happen. Sometimes in the past when I deliberately ate something, no reaction. Other times I'll feel sick for a few hours. Other times I'll get a headache. Or a rash. It's different every time, but I'm at a place where I'm now really really careful.

I've read that your body does its best to "tolerate" gluten. It seems for me, the longer I'm away from gluten the greater my loss of tolerance. So I react now to small amounts of something which in the past, when I was eating a small bit of regular gluten, I wouldn't have reacted to as much.

I think what you say about the tolerance makes sense.

Just saw the doc. today, had a "full" thyroid panel, Iron, vit B 12 def. blood tests taken. Also being scheduled for a colonoscopy, oh Yea! But I really have to have it, just dread it.

My neck is soo sensitive right now, I can't stand it to be touched or any clothing touching it. Somethings up with that! I'll be anxious to hear the results of the blood tests.

[angieInCA]

Last Tuesday I snagged 2 french fries off my husbands plate that he had brought home from the local burger joint. Now I knew they used the same fryer to fry their onion rings and french fries but I figured 2 fries would have such a small amount it couldn't hurt. Yeah Right! I was sick for 3 days and the French Fries were the only thing I had ingested that could have had any gluten.

My DH said "that will teach you to steal my french fries"

[Amber M]

Last Tuesday I snagged 2 french fries off my husbands plate that he had brought home from the local burger joint. Now I knew they used the same fryer to fry their onion rings and french fries but I figured 2 fries would have such a small amount it couldn't hurt. Yeah Right! I was sick for 3 days and the French Fries were the only thing I had ingested that could have had any gluten.

My DH said "that will teach you to steal my french fries"

My husband agreed to work with me on this gluten issue, and although he did not give it up, he was going to be very careful and leave me an area of the kitchen and some pots, pans, etc. alone. I hadn't payed much attention after that. But with the way I am feeling this last several days, I decided to watch him more carefully. He glutened the whole kitchen, including my area. Gravy on his fingers and pumkin bread and went right to the microwave and got it all over there and the whole area. He also grabbed my coated frying pan! I think I can stop trying to figure out what I ate (since I was sure I ate no gluten).

Needless to say, I had a melt down. He got angry and made a few comments. He doesn't understand how that can hurt me. So, he is just not there.... I am very hurt right now. I tried to tell him about what I have been reading on this issue. I feel sometimes like I am talking to a wall, a brick wall!! He will get it before it is over, or I won't buy him any gluten, so there!! I would love it if the house was gluten free.

[JRock]

Amber,

Have you asked him to go gluten free, at least in the house? I'm extremely grateful to have a husband that said our home would be gluten free because he wants me to be healthy (one exception - he loves those weird sausage wrapped in pancake on a stick things for breakfast, but he keeps them in their wrappers while in the house and eats them in the car). I know he's sacrificing a lot, but he still eats gluten at work or when we go out to eat (we both want to make sure he doesn't develop an intolerance to gluten)... he's extremely careful after having a beer or other gluten - he won't kiss me until he's brushed his teeth

I think if your husband realized that it would help you so much, he would at least consider becoming gluten free at home. It's not like he'd be giving it up forever like you have to - and it's for your health. The tiniest amount of CC can set your system off - it's just not worth the risk.

Jen

[Amber M]

Amber,

Have you asked him to go gluten free, at least in the house? I'm extremely grateful to have a husband that said our home would be gluten free because he wants me to be healthy (one exception - he loves those weird sausage wrapped in pancake on a stick things for breakfast, but he keeps them in their wrappers while in the house and eats them in the car). I know he's sacrificing a lot, but he still eats gluten at work or when we go out to eat (we both want to make sure he doesn't develop an intolerance to gluten)... he's extremely careful after having a beer or other gluten - he won't kiss me until he's brushed his teeth

I think if your husband realized that it would help you so much, he would at least consider becoming gluten free at home. It's not like he'd be giving it up forever like you have to - and it's for your health. The tiniest amount of CC can set your system off - it's just not worth the risk.

Jen

I don't think he would, but he understands better today. He will be more considerate I think. Speaking of which, tonight, Christmas eve, we had a house full of family and of course gluten from one end to another. I tried not to touch any, but cleaning up it was impossible. I washed my hands as much as possible. I just hope I made it with no problems for the next week. I am done with company now, thank god, and back in control. I feel better today than I have in a week so I hope it keeps up. Happy Holidays to everyone and thanks for the support this last several months. I don't know what I'd do without you all because I feel very alone in my crowd.....

[Fiddle-Faddle]

Amber, can WE tell him to let you have a gluten-free kitchen???

Honestly--if you love someone, you don't DREAM of risking their health for something stupid like gluten.

I suppose he could say that if you loved him, you wouldn't ask him to sacrifice his gluten for your health, but that would kind of make it awfully clear how you rate compared to food in his book...

After being on this site for nearly 3 years, I can see a pretty strong trend here. The wives knock themselves out to make everything gluten-free for their husbands, while the husbands "allow" their wives to have a small corner of the kitchen, and never dream of helping their wives, let alone actually MAKING gluten-free food for them.

[Amber M]

Amber, can WE tell him to let you have a gluten-free kitchen???

Honestly--if you love someone, you don't DREAM of risking their health for something stupid like gluten.

I suppose he could say that if you loved him, you wouldn't ask him to sacrifice his gluten for your health, but that would kind of make it awfully clear how you rate compared to food in his book...

After being on this site for nearly 3 years, I can see a pretty strong trend here. The wives knock themselves out to make everything gluten-free for their husbands, while the husbands "allow" their wives to have a small corner of the kitchen, and never dream of helping their wives, let alone actually MAKING gluten-free food for them.

I could force the issue, and I know I would win in the end, but I haven't gotten there yet. I am going to give him the chance to do what is right and we wil see. If I keep getting sicker not eating it then I will be blaming him. We talked more and he is worried now about my health, so we will see how it goes. I may need your help, I'll let you know.

I've had a bad day, I could hardly stand up this morning my legs hurt so bad. I had the dizzies and my face is totally numb, plus I notice my breathing changes. I always say if I didn't tell myself to breath, I don't know if I would. I couldn't focus this morning while the kids were here to open presents. I am so sick of this stuff. I was like this last Christmas too, but at least I know what it is now.

My lower colon is inflammed or something again, I am waiting to be scheduled for the colonoscopy. Now I'm freaked out about by ovaries too. I am 51 and had everything else out in my 20's due to cervical cancer, except my ovaries. The doctor got me thinking about it the other day. I have constant bladder problems too, and trace blood the last two urine tests. The urine test the other day, they are sending straight to the lab and if there is blood again, I will have to see a urologist (sp).

I tried to take a nap this afternoon, and I just layed there and cried. I'm slightly depressed right now. Thanks for your offer. I have noticed a trend with this too. I wish he would just offer but he is a lot older than me and pretty set with his sweets!

[caek-is-a-lie]

The tiniest crumb of a sub-ingredient of an ingredient that contains gluten makes me sick and causes all sorts of neurological problems for me.

[Amber M]

The tiniest crumb of a sub-ingredient of an ingredient that contains gluten makes me sick and causes all sorts of neurological problems for me.

Seriously? Tell me more. Sometimes I begin to wonder if it's that or something else. I know for sure I did not eat gluten but it was all over my kitchen. I wasn't going to touch the rolls, I had some one else cook them and then, without thinking I poked one to see if they were done and I can't remember washing my hands. Plus they were scooped off the cooking tray and I know crumbs got everywhere as well as all over the tables, etc. Tell me more please, it will help. It is just so hard to believe that it could be that. I'm a mess right now. Thanks, Amber

[Fiddle-Faddle]

Hang in there, Amber.

Gluten COULD be at the root of all your symptoms.

But you also might be dealing with additional food intolerances, or an intestinal infection, or a candida issue (systemic yeast infection), or even Lyme disease.

You won't likely find the answer immediately, which is frustrating.

The best thing for you now foodwise, I think, would be to limit your diet to cooked veggies, cooked fruits (canned pears, canned peaches, or applesauce--NOT with sugar or HFCornSyrup), rice, and plained broiled fish, chicken or beef (organic if possible). Limit spices to onion, garlic, salt, and pepper. I know this sounds terribly boring, but even if FOOD is not the root cause of your symptoms, your tummy needs this kind of diet until it heals from whatever it is.

Your hubby should NOT expect you to prepare any food for him that is not in the above paragraph. Shouldn't he feel REALLY guilty if his glutening the kitchen was what made you get ill? Shouldn't he want the best for your health? If you get much better on this plain, boring diet, that may penetrate his brain and he may exert himself to help you to continue to get better.

Perhaps you could encourage him to join this board and post questions to other spouses of celiacs. Or he could post questions to us.

WE want you to get better, whatever it takes--gluten, no gluten, celiac diagnosis or something else. Does he?