Backtracking

[Beth in NC]

I haven't been able to go a whole week yet, without something getting me. Ugh!

Around bedtime last night I started getting a headache and tossed and turned throughout the night...sinus congestion despite Claritin D as well. This morning I had nausea, gas like I hadn't had since going gluten-free, achey, weak (kept dropping the hair dryer). The only thing I had done differently yesterday was take my first Lactaid, but from what I have read here, those are gluten-free. I had the pharmacy call the company and that's what they were told, but I wondered about the facility. I also used some I Can't Believe It's Not Butter spread, but I had already been using the spray and their products are LABELED gluten free.

Just having a reaction to the lactose wouldn't give you anything other than gastric symptoms, would it? Not the weakness or pain, right?

The only other thing it could have been was CC. I've been careful at home, I thought. I went to Target and Home Goods yesterday, but I didn't eat anything. I do pick at my lips so I guess as long as I have that habit, I'm going to be more at risk for CC...unless I wash my hands first each time!!! NOT likely since it's a nervous habit!

So do we just resolve ourselves to not knowing what zapped us sometimes? How do you know what to avoid next time?

[Ridgewalker]

How long have you been gluten-free? It's not uncommon to just have a few relapses in symptoms at first, even without the help of gluten.

Having said that, cc in your home or the hands on your mouth thing could be the problem- either one or both.

Are you sure that no one had double dipped their knife in the butter? Peanut butter, mayo, whatever?

Cutting boards and knife blocks harbor crumbs. Toaster, of course, must be dedicated to gluten-free bread. If you make regular pasta for other family members, the pasta water splashes everywhere.

I know you're taking Lactaid, but if you tried Rice Dream rice milk- that is labeled gluten-free, but it is not! It has barley in it. They're barely getting by with it because it's a small amount.

[Beth in NC]

How long have you been gluten-free? It's not uncommon to just have a few relapses in symptoms at first, even without the help of gluten.

I hadn't thought of that.

Having said that, cc in your home or the hands on your mouth thing could be the problem- either one or both.

Are you sure that no one had double dipped their knife in the butter? Peanut butter, mayo, whatever?

That I'm sure of because I use separate butter from them and I had just bought it. My mayo is the squirt kind. It could be that I touched something while cleaning up dishes and no thinking touched my mouth. Who know?

Cutting boards and knife blocks harbor crumbs. Toaster, of course, must be dedicated to gluten-free bread. If you make regular pasta for other family members, the pasta water splashes everywhere.

Cutting board has been replaced, knife block...I only put the knives in after running through the dishwasher and only if they have no traces of dried on food that was left. Toasters are separate. We haven't had pasta in over a week...that could have been my first glutening a week ago.

I know you're taking Lactaid, but if you tried Rice Dream rice milk- that is labeled gluten-free, but it is not! It has barley in it. They're barely getting by with it because it's a small amount.

I didn't get any rice milk because I had a whole gallon of regular skim milk at home and didn't want it to go to waste. So how am I to know when something is labeled gluten-free and it isn't? What about the Butter sub?

BTW, my son is up your way this week at Mountain Top Youth Camp, just the other side of where the fire was on Sauratown Mountain. Not many times you hear of someone from Pinnacle online!

[dilettantesteph]

I haven't been able to go a whole week yet, without something getting me. Ugh!

Around bedtime last night I started getting a headache and tossed and turned throughout the night...sinus congestion despite Claritin D as well. This morning I had nausea, gas like I hadn't had since going gluten-free, achey, weak (kept dropping the hair dryer). The only thing I had done differently yesterday was take my first Lactaid, but from what I have read here, those are gluten-free. I had the pharmacy call the company and that's what they were told, but I wondered about the facility. I also used some I Can't Believe It's Not Butter spread, but I had already been using the spray and their products are LABELED gluten free.

Just having a reaction to the lactose wouldn't give you anything other than gastric symptoms, would it? Not the weakness or pain, right?

The only other thing it could have been was CC. I've been careful at home, I thought. I went to Target and Home Goods yesterday, but I didn't eat anything. I do pick at my lips so I guess as long as I have that habit, I'm going to be more at risk for CC...unless I wash my hands first each time!!! NOT likely since it's a nervous habit!

So do we just resolve ourselves to not knowing what zapped us sometimes? How do you know what to avoid next time?

I find this very difficult. I have been at this 8 months now. At first it was wonderful. I stopped eating cereal and bread and felt fantastic. Then I got increasingly more sensitive. At first I didn't react until the next day. I would try to only try one new thing a day. My son has it too so we can test things for each other. Now that we are more healed it seems to take a few days of eating trace amounts before we realize that we are sick. I think that we have to be more watchful of minor symptoms instead of waiting for the quick trips to the bathroom. Rice Chex seems to make us sick despite being gluten free. That makes it so much harder when "gluten free" things seem to make us sick. Dairy makes me sick too, but not him. Did you have dairy with the lactaid? I hear lactaid doesn't work well for celiacs. My most recent attack seems to come from gluten free Kosher stuff. Probably made at a bakery with where non gluten free stuff is also made. American products can be labelled gluten free while containing 200 PPM gluten. It doesn't take much to make you sick at that concentration. European goods have to have less than 20 PPM so are a bit safer. We have also made separate gluten free areas in the kitchen for meal preparation. Watch out for old gluten around that house back from when you didn't know that you were celiac. I think that there must have been some in my baking powder which was labelled gluten free. Also one round of trace gluten and I'm sick for a week. Just because you are still sick doesn't mean that you are still eating gluten. Good luck.

Stephanie

[Ridgewalker]

So how am I to know when something is labeled gluten-free and it isn't? What about the Butter sub?

It's a major problem, that's getting ready to get a lot worse. In the past, companies used their own discretion about labeling "gluten-free." That wasn't an ideal situation, because they were no laws defining what gluten-free meant. The upside of it was, that companies that were labeling their products gluten-free were mostly companies directed straight at gluten intolerant people. Therefore, it was in their best interest to keep their products truly gluten-free.

Now, we have new Codex laws coming into effect soon. These laws define "gluten free" to be less than 20 parts per million. Unfortunately, 20 ppm is still enough to make some people sick. Now, my thinking is that most gluten-free companies (like Glutino, Gluten Free Pantry, etc) are still going to be safe. Why mess with adding gluten, when it's fine as-is?

The major problem is going to be that other products that are currently NOT labeled gluten-free, because they DO contain small amounts, will now be able to legally claim to be gluten-free! UGH!!! This is precisely what happened with Rice Dream. Everyone used to know that Rice Dream had gluten in it. But with the new laws, the company realized they could get away with labeling it gluten-free anyway. Per their own customer service people-- they never changed the recipe to be gluten-free. They just started labeling it as such.

This is an issue people in the UK have been dealing with for years already, and I really don't know how they do it.

BTW, my son is up your way this week at Mountain Top Youth Camp, just the other side of where the fire was on Sauratown Mountain. Not many times you hear of someone from Pinnacle online!

Omg, you're kidding! Sauratown Mountain takes up most of the view out my kitchen window! The fire, oh man that was a crazy time. Although my boys loved watching the constant helicopter and plane traffic. Our view is of the side that the camp is on- So I'll send a wave his way for ya!

There were two nights when the fire made its way over to our side of the mountain... so incredibly eerie at night.

[Ridgewalker]

American products can be labelled gluten free while containing 200 PPM gluten. It doesn't take much to make you sick at that concentration. European goods have to have less than 20 PPM so are a bit safer.

I thought it was the other way around- 200 in Europe and 20 here. I could totally be wrong, though, it's been quite awhile since I read the actual laws. It wouldn't surprise me a bit if our laws are more lax.

[Beth in NC]

Sooooo...what do people plan to do? Just buy stuff from companies that are geared toward Celiacs? I'm lost...if that is the case, then it could be the butter substitute...but I have been using the spray the whole time, so maybe not.

When do these laws take effect?

Will most of you end up calling the companies? Will they even tell us if they are 100% gluten-free vs the small amount that is "legal"?

I sure don't want to have to learn all this twice. I'm only 2 1/2 weeks into it now.

[Calicoe]

I find this very difficult. I have been at this 8 months now. At first it was wonderful. I stopped eating cereal and bread and felt fantastic. Then I got increasingly more sensitive. At first I didn't react until the next day.

Yes, I am in the exact same boat. I feel like I am sick just about every day. I almost feel like just the act of eating makes me ill. I'm so sorry to complain, but I feel like I can't take it anymore. I have a doctor's appt. on Aug. 14th, although I don't have much faith in them anymore. What are they going to do when I tell them I want to be tested for celiac disease, hypothyroidism, and Candida.

IThis is precisely what happened with Rice Dream. Everyone used to know that Rice Dream had gluten in it. But with the new laws, the company realized they could get away with labeling it gluten-free anyway.

oh man, I didn't know that about Rice Dream. That must be true of their ice cream as well.

[dilettantesteph]

I haven't been able to go a whole week yet, without something getting me. Ugh!

Around bedtime last night I started getting a headache and tossed and turned throughout the night...sinus congestion despite Claritin D as well. This morning I had nausea, gas like I hadn't had since going gluten-free, achey, weak (kept dropping the hair dryer). The only thing I had done differently yesterday was take my first Lactaid, but from what I have read here, those are gluten-free. I had the pharmacy call the company and that's what they were told, but I wondered about the facility. I also used some I Can't Believe It's Not Butter spread, but I had already been using the spray and their products are LABELED gluten free.

Just having a reaction to the lactose wouldn't give you anything other than gastric symptoms, would it? Not the weakness or pain, right?

The only other thing it could have been was CC. I've been careful at home, I thought. I went to Target and Home Goods yesterday, but I didn't eat anything. I do pick at my lips so I guess as long as I have that habit, I'm going to be more at risk for CC...unless I wash my hands first each time!!! NOT likely since it's a nervous habit!

So do we just resolve ourselves to not knowing what zapped us sometimes? How do you know what to avoid next time?

It helps to check on the label if it says anything about being processed in a facility that also processes wheat. I avoid those items. Apart from that it seems to be trial and error. It doesn't help much to ask other celiacs because tolerance varies. Some can eat things that others can't. It is a painful way to find out. There isn't a way for companies to test for 0 PPM gluten. The tests only go down so low. It seems like once you find a good company you can trust most of the things that they make.

The law for the U.S. is supposed to be 20 PPM and it was supposed to start in August, but it is being held up. The old law is 200 PPM. The 20 PPM law in Europe in already in place.

Stephanie

Stephanie