Has Anyone Else Experienced This?

[escanlon]

Hi all,

I am new to posting on this forum, however I've been reading it now for quite awhile and figured it was time to join. I'm newly self-diagnosed, after battling years of GI issues and getting nowhere with the doctors. All my tests came back negative, and I was told that I had IBS and just had to 'deal with it'. It was up until January this year that things got to the point where I could no longer go to work because of the D and excruciating pain, not to mention the general fatique and just lack of energy.

I've been researching online for the last couple weeks, and just started a Gluten-Free diet this past Friday. The very first day I felt like a million bucks. I was in tears when I was explaining to my Fiance how great it was to feel 'normal' for once, that's how happy and relieved I felt. I thought 'ok, this is it.. I've found what it is. I can fix it'. After accidentally ingesting Gluten the next day (although I've only been on the diet a few days to begin with), I have a couple questions....

Here's some background to explain what happened: That evening I had ground beef (that I later found out was out of the tube, processed, containing fillers aka GLUTEN >.<) and I paid for it. I felt horrible, and had the familiar stabbing pains and D, cramps, fatigue, etc about 40 mins after I ate, and into the evening. The next morning I was still quite sick, but a couple hours after bouts of D, I felt good and thought it was 'out of my system'. I had my Gluten-Free brunch and felt pretty good the rest of the day. Come dinner my mother-in-law made me a gluten-free pizza and added '100% ground beef' to half (I asked for half only just incase, though she verified that it was 100% meat, with no filler, and I even read the packaging). After I ate that, I got a reaction - go figure.

Same thing the next day, felt like it was mostly out of my system (since it was only a tiny bit of ground beef), had my gluten-free brunch and was feeling good again. I thought everything was good, made myself a gluten-free dinner consisting of chicken (100% breast, no sauce or anything) and some veggies. Happily ate my dinner while my fiance enjoyed his Gluten-filled donaire, and everything seemed good. After my chicken & veggie dinner, about 9:30pm rolled around, another reaction. That night, and into the next morning feeling horrible, crampy, D, etc, etc. All that fun stuff.

My question to you is; I know the timeframe that Gluten stays in your body differs for everyone, but is this somewhat typical? Has anyone else experienced anything like this at the beginning of their gluten-free diet? I just find it so strange, and I'm new to the Gluten-Free lifestyle, so it's VERY confusing for me. I would assume my body is still having reactions, and that's why I'm still sick, despite my Gluten-Free food. Even today, I've had nothing by decaf tea and gluten-free food, and my tummy's not very happy to say the least!

Any insights would be GREATLY appreciated. My doctor is not very helpful, and doesn't really seem to listen to me. After reading other posts, I have more faith in fellow Celiacs/Gluten Intolerants.

Thanks for your time.

[mushroom]

Welcome, escanlon!

My best guess would be that you are getting gluten cross-contamination. Your mother-in-law prepared your pizza and could well have used utensils and a pizza pan that were gluten contaminated, not to mention picking up some gluten flour somewhere. Then your fiance was eating gluten food while you had your gluten free meal. Were these meals prepared with different utensils and pans and were all yours gluten free?

[escanlon]

Welcome, escanlon!

My best guess would be that you are getting gluten cross-contamination. Your mother-in-law prepared your pizza and could well have used utensils and a pizza pan that were gluten contaminated, not to mention picking up some gluten flour somewhere. Then your fiance was eating gluten food while you had your gluten free meal. Were these meals prepared with different utensils and pans and were all yours gluten free?

Thanks for the quick reply mushroom

That is what I was questioning at first, however I noticed they did use a separate baking pan. It was a personal pizza so I cut it with my own utensils, so I can't see how there could have been cross-contamination there. That's the part that boggles my mind! :S

After this incident I've decided to prepare all my meals myself, which I did the following night and then was still sick - but that could have been the gluten in my system still I guess.

Despite their best efforts, there could have still been some contamination. Who knows, Gluten is a tricky little protein!

[mushroom]

Despite their best efforts, there could have still been some contamination. Who knows, Gluten is a tricky little protein!

You're right, it is indeed. It is a good idea at first to prepare all your own meals, not to eat out at anyone's house or a restaurant until you have learned the ropes and all the gluten hiding places. When I was talking about utensils, did she use a rolling pin that could have had flour on it? Did she use any other wooden or plastic utensils in working the pizza dough, or set it to rise in a scratched plastic bowl? There are so many possibilities for gluten to enter off other baking utensils, and was the separate pan your pizza was baked on thoroughly cleaned beforehand? Baking pans especially are difficult to clean, but if it were a brand new foil pan that would be different.

The amount of time it takes for gluten to work its way out of the system is different for every individual. Some poor wretches have it linger on for a couple of weeks after an exposure; for others it is gone in a day or too.

[IrishHeart]

Hi and welcome!

It's GREAT you have reduced your migraines!! awesome!!

I agree--the wise people on here know more than anyone in the medical community. No one "gets it" like another one with the same condition. I love this forum!

Like you, I had years of suffering and am newly gluten-free since January 1. I see some improvements, mostly in that scary brain fog and the cessation of "D" and horrible, gut-wrenching burning/heartburn from my throat to my ...well, other end .

I stick with it and hope the other 100 or so symptoms disappear too!

It takes a LONG time for gluten to get out of your system and for the damage done to your intestines--and the rest of your body systems/organs-- to heal. Be patient with yourself.

The only good advice my doc gave me was avoid dairy, too as it is difficult to process until you heal-- and to give it at least 6 months to see REAL progress.

The cheese on the pizza may have given you some trouble--not the beef? Just a thought. I am not thrilled about giving up dairy, ( I love cheese!!)but I do it because I want to give the gut as much help healing as I can. Many people give up the dairy and can add it back in later.

I, too, want to feel better right now BUT unfortunately, the healing time is different for everyone.

Everyone on here tells me it gets better.I believe them! Hang tough!

[ravenwoodglass]

One other thought, you mention your SO was eating a gluten meal. Did you guys do any kissing without him brushing his teeth first? I know it sounds silly but that will gluten you also. Also check your hand lotions if you use them for gluten ingredients as the residue on your hands could CC the food you prepare.

[escanlon]

You're right, it is indeed. It is a good idea at first to prepare all your own meals, not to eat out at anyone's house or a restaurant until you have learned the ropes and all the gluten hiding places. When I was talking about utensils, did she use a rolling pin that could have had flour on it? Did she use any other wooden or plastic utensils in working the pizza dough, or set it to rise in a scratched plastic bowl? There are so many possibilities for gluten to enter off other baking utensils, and was the separate pan your pizza was baked on thoroughly cleaned beforehand? Baking pans especially are difficult to clean, but if it were a brand new foil pan that would be different.

The amount of time it takes for gluten to work its way out of the system is different for every individual. Some poor wretches have it linger on for a couple of weeks after an exposure; for others it is gone in a day or too.

It was a frozen 'Glutino' pizza that you just pop in the oven, so there were no utensils used to make it luckily. And I do believe she used a brand new foil pan to bake it. She could have even put it down on the counter for a moment though, you never know. I'm sure there's enough Gluten up there just from everyday cooking and meal preparation.

Thank you for the insight on the time it takes for Gluten to work its way out of your body. Hopefully I won't be one of those unlucky ones, but only time will tell!

I'm just going to stick to my diet and wait it out. That's really all you can do I guess - though I read in another forum that Aloe water helps? I'm going to have to pick myself up some of that

Take care.

[escanlon]

Hi and welcome!

It's GREAT you have reduced your migraines!! awesome!!

I agree--the wise people on here know more than anyone in the medical community. No one "gets it" like another one with the same condition. I love this forum!

Like you, I had years of suffering and am newly gluten-free since January 1. I see some improvements, mostly in that scary brain fog and the cessation of "D" and horrible, gut-wrenching burning/heartburn from my throat to my ...well, other end .

I stick with it and hope the other 100 or so symptoms disappear too!

It takes a LONG time for gluten to get out of your system and for the damage done to your intestines--and the rest of your body systems/organs-- to heal. Be patient with yourself.

The only good advice my doc gave me was avoid dairy, too as it is difficult to process until you heal-- and to give it at least 6 months to see REAL progress.

The cheese on the pizza may have given you some trouble--not the beef? Just a thought. I am not thrilled about giving up dairy, ( I love cheese!!)but I do it because I want to give the gut as much help healing as I can. Many people give up the dairy and can add it back in later.

I, too, want to feel better right now BUT unfortunately, the healing time is different for everyone.

Everyone on here tells me it gets better.I believe them! Hang tough!

Thank you! Everyone on here is so welcoming and helpful

My fiance suggested I stay away from dairy too. I told him I've always been ok with it, and that I 'couldnt' have an issue with dairy - I think I was just being slightly ignorant and didn't want to give up another food group, haha. Now that you mention it as well, it does make sense.

I'm going to cut out dairy now and see if that helps any. At least for now until my body heals, and then I can always bring it back into my diet and see how I feel.

Thanks again!

[escanlon]

One other thought, you mention your SO was eating a gluten meal. Did you guys do any kissing without him brushing his teeth first? I know it sounds silly but that will gluten you also. Also check your hand lotions if you use them for gluten ingredients as the residue on your hands could CC the food you prepare.

He's actually very good with that; washing his hands, brushing his teeth. He teases me a lot with what I can't eat, but as far as CC, he is very careful. I've checked all my medications and creams, even shampoo/conditioner to see if if anything other than food products contain Gluten and they don't. That's what obsessive researching does to you I guess lol.

Thanks for the thought though!

[healinginprogress]

I was very reluctant to give up dairy, as well. But after two weeks gluten-free (after a positive blood-test) and still getting sick, I have gotten really strict, and cut out almost everything! I've also startede preparing things really simply, and keeping a food diary, so that I can more easily detect what is making me sick. For example, I had eggs, some broccoli, and a baked yam, with nothing but some simple spices, and I ended up gassy and bloated. Now I know it could be eggs, or it could just be that broccoli can give people gas. So I can try either food on their own and see which it is. Much easier than trying to tease out all the ingredients in a gluten-free pizza!

It is really tough, but hang in there, I'm trying to keep the faith Good luck!

[YoloGx]

Both my boyfriend and I have had migraines after eating Glutino products. It might not be gluten free enough for you. For some of us we are more sensitive than the usual 20 parts of gluten per million. I find it much safer not to eat pre-packaged food even if it is gluten-free. I have found it is far better to make food from scratch, and initially avoid ground up grains even if they are gluten free.

If you are still suffering, consider investigating the avoidance of other possible common allergens too.

One tip--often plain yogurt is OK whereas other milk products are not. For myself I have found making home made yogurt is best (since it makes it lactose free) and let it ferment 24 hours before refrigerating it.

I have taken to always washing my hands before putting them on my face. It may seem a little neurotic, however with celiac, unless you are in an entirely gluten free environment, its actually necessary. You may need your girlfriend to do the same when she is with you, esp. if she is still eating gluten.

So glad meanwhile to see you are at least getting some relief. It takes time to learn all the things it takes to be well, but its highly worth it.

Bea