Please Help Me Figure Out What Is Glutening Us

[hadabaday2day]

I know I have seen a post like this before, but now I can't find it. My son and I have been gluten free since January and we were doing well for months. Now for the past month it seems we are constantly on again off again with symptoms. I pretty much feel like I did before I stopped eating gluten. I have indigestion EVERY time I eat. I am miserable all over again. I have been glutened twice that I know of since being gluten-free and both times I was incredibly nauseous. Now I am not nauseous, just indigestion, so I feel like I must be getting a steady stream of gluten if I am getting it. My son is on and off with very mild diarrhea after months of miraculous (to us anyway) solid poop. And his itchy bumps and eczema are back, just mildly, but he has been clear skinned since February. He says his tummy hurts every few days. He is only 3 so no much info from him other than what I can observe. I don't think I have introduced anything new into the house and our whole house is gluten-free so no CC. I have been doing my best to eliminate questionable things like Frito Lay products. I checked my floss, toothpaste, soap, all other toiletries are formulated gluten-free. I haven't checked the dishwasher soap, but I was pretty sure that Palmolive said all their products were gluten-free. Please correct me there if you know otherwise. I have been over and over all our food. We eat things mostly labeled gluten-free or if not I check carefully. Only things I question even though I have checked would be Hormel chili (only reg w/beans or Chunky no beans) Fritos, and tortilla chips (CC is possible I guess).

A week and a half ago I stopped getting anything to eat outside of the house besides coffee. And while I think it is very possible to get CC at Starbucks, I can't see it happening consistently now when it never happened before.

The only other reasonable thing I can think of is that it is purely coincidental that we are both getting "glutened." Maybe my stomach just hurts because my depression has been back for a month or so and my son has been attending daycare for about the same amount of time. His daycare provider is very knowlegible and I bring ALL his food, but CC is very possible just from playing with gluten covered kids.

Any ideas out there that I am missing. Feel free to ask any questions. Help please! We were feeling so good.

[hadabaday2day]

I forgot, we have also been eating a ton of Sour Patch Kids lately, but the ingredients looked okay.

[RESO]

Just a thought, is it possible that you and your son are reacting to the dyes in the sour patch kids? The reason I am asking is that I have been finally starting to feel pretty good lately, but noticed when I ate pistachio ice cream that I got bloated and gassy, but not with any other flavor, so I'm pretty sure that the green dye is what did it.

Another thing to consider is that it takes a long time to feel better on a consistent basis. I say this based on my experience so far and based on many posts in this forum.

Would you be willing to try eliminating the sour patch kids for about a week to see if it makes any difference?

And a third thought, is there anything else you have introduced to your diet over the last month that you weren't eating before? Even if it's gluten free, you may be reacting to something else in the new food.

Good luck finding the right answer and I hope you and your son feel better soon.

[FMcGee]

I have gluten-like reactions to things like barbecue sauce, even if they're gluten-free, because they almost always have high fructose corn syrup in them, and I think that just doesn't sit well with me. Also, if I get too much sodium, I feel sick. I don't know if either of those are your problem, of course - just throwing it out there. Good luck, and I hope you feel better soon!!

[Sassy-1]

Coffee may be the culprit for you. I have found that my system has become so sensitive that regular coffee on a daily basis just kills me. I have had to switch to low-acid coffee and have no problems.

Starbucks is also a major problem for me. Within a couple of hours of anything from Starbucks other than tea from a tea bag, I have the worst stomach issues that can be quite embarrassing if I'm around anyone.

Not sure what else it might be with your son. It has to be so hard with a little one. I would double-check with the daycare to be sure the kids aren't sharing snacks. They might think it's okay for him to have "just a taste". I know from personal experience that "just a taste" builds up over time and I end up sick sick sick.

Hope this helps a little.

[darlindeb25]

Maybe the two of you are super sensitive. Most grains have a measurable amount of gluten in them, although the amount is less than 20ppm, so it can be labeled gluten free. Many of us cannot eat gluten free cookies, crackers, and such for this reason. Some people will react to as little as 5ppm. There is not available testing for less than 5ppm, so who knows if there is any grain out there that really is gluten free.

Try staying away from processed foods for a while, see if that helps, then try one at a time, to find out what is effecting you.

You both may possibly have other intolerance's too, yet both having problems at the same time seems like maybe a little gluten is getting to you.

[ang1e0251]

I agree with the PP. You said you are eating things labeled gluten-free but those can have those small amounts of gluten as she mentioned. I would stop eating all processed foods for awhile and see if you can't get your good health back. If you eat only whole foods you prepare yourself, then slowly add new foods, one at a time, you should be able to pinpoint the culprit.

[Ahorsesoul]

Do you take vitamins that might not now be gluten-free?

[nutralady2001]

Have you checked the ingredients list of what you buy, could they have changed?

The first few months I stuck to fresh fruit/veg/meat chicken

[hadabaday2day]

Thank you to everyone who responded. First off, my vitamins are okay, my prescriptions, with the exception of one that said they add no gluten ingredients but can't guarantee anything, are ok. I check everything that goes into my shopping cart every time. Even if I buy it every week.

I have considered other intolerances, but if that is what it is then kill me now, I can't deal with anything else.

Daycare would never let my son have just one taste. I am positive on that one, but I know that kind of thing happens.

I would totally be willing to give up the Sour Patch Kids and all other food dyes and see if that helps. I have also eliminated all msg that I possibly can. And I plan on stopping with the coffee or at least making it at home to start and go from there.

We don't live off of prepackaged stuff, but we do eat some and while I wouldn't have a problem eating a whole food diet, my 3 year old is a different story. My kids are far from your typical "fast food era" kids even before gluten-free, but my son is kinda picky. We don't eat a lot of sweets or cookies, we mainly buy Chex, gluten-free crackers, white rice, pasta sauces, refried beans, chili, quinoa, potato chips (sometimes), yogurt, some canned veggies and fruit, but mainly fresh, hot dogs (nitrate free), bacon (nitrate free, uncured), turkey, corn tortillas, gluten-free bread, gluten-free baking mixes, potato flakes, and peanut butter. That is pretty much the extent of things that come in a package that reside in my house. I am not sure if "whole foods" means not eating rice and quinoa and corn tortillas or if it just limits things with more than a couple ingredients or un-natural ingredients. If someone could specify that would be great. I could probably get my son to do it if he had those options, but not without it.

Other than that I don't know. My son is more covered in hives by the day. My husband thinks I am a whack job. He tries not to, but he gets frustrated when I take away one thing after the other. My son is more covered in hives by the day, but it kills me to think of pulling him out of "preschool". He loves it so much and he just started. I really think I am missing something though because my stomach hurts about 60% of the time and feels normal the rest. It seems that whenever my stomach hurts, my son has new hives, or a stomachache too. I have a nagging feeling that it's right in front of my face.

Thanks for all your suggestions. I'm sure I will figure it out eventually.

[tom]

.. . .

Most grains have a measurable amount of gluten in them, although the amount is less than 20ppm, so it can be labeled gluten free.

Wow, that's a new one - except of course for oats.

[darlindeb25]

TOM...Wow, that's a new one - except of course for oats.

Isn't the implementation of gluten ppm in the future in the U.S.?

To begin with, they can't even test lower than 5ppm, so telling us gluten free is just a guess. Some celiac's/gluten intolerants can tolerate less than 20ppm, some less than 10ppm, some less than 5ppm, and some of us, none, we can't have gluten. If I eat 2 gluten free cookies, I will deal with it for at least 3 weeks. Even GIG will tell you, their verification of companies only goes down to 10ppm:

Open Original Shared Link

Does gluten-free certification guarantee that a product is gluten-free?

The mark assures that the product contains less than 10-ppm gluten (5-ppm gliadin) and similar proteins from rye and barley as measured by using testing methods that are accepted for gluten testing by analytical associations such as the Association of Analytical Communities (AOAC), testing researchers and other such agencies. No testing method is available that measures to zero.

So, hadabadday2day, it's possible your little guy is still reacting to the gluten in some of the products. IF you can bake, maybe you could make him almond flour cookies or something. I am not a good source for recipes...I do not eat any processed foods, only whole foods.

[ang1e0251]

We don't eat a lot of sweets or cookies, we mainly buy Chex, gluten-free crackers, white rice, pasta sauces, refried beans, chili, quinoa, potato chips (sometimes), yogurt, some canned veggies and fruit, but mainly fresh, hot dogs (nitrate free), bacon (nitrate free, uncured), turkey, corn tortillas, gluten-free bread, gluten-free baking mixes, potato flakes, and peanut butter.

I see potential probelems in a few things. Potato chips, some brands like Lays, have no gluten in them but are made in a shared facility. I can eat them 10 times with no problem, then the 11th time whammy. I stopped eating them. Lays Stax are reported to be OK. Corn tortillas, in the beginning, I could eat the cheapest kind. Then I started reacting to something I was eating every day. It was mild but was building up. Someone wrote her son could only eat Mission tortillas or he reacted. I realized I was becoming more sensitive. When I stopped eating them, I was OK. Now I just eat Mission if I eat them. Now about gluten-free bread & mixes, as has been pointed out many of these have small amounts of gluten and sensitives will react to them. The other problem, for me anyway, is just too much grain does not sit well with me. I've cut way back on them and I feel really good.

That is pretty much the extent of things that come in a package that reside in my house. I am not sure if "whole foods" means not eating rice and quinoa and corn tortillas or if it just limits things with more than a couple ingredients or un-natural ingredients. If someone could specify that would be great. I could probably get my son to do it if he had those options, but not without it.

Whole foods would be foods that are complete as they come from nature; meat, fruit, vegetables, nuts, beans & rice. Also you want to use simple seasonings while you are in this transition. The point is that if you back off to eating whole foods for a time, your system should recover and you should regain your good health. If you still don't, then it's probably some other problem medically or another food intolerance like maybe dairy. If you do feel better, then after a month or so, start adding other foods back in but only one at a time. This should make the problem food clear to you. I don't know what you can get your son to eat but this is a clear and logical way to approach your problem. Otherwise, it's just hit and miss experimentation.

I have a nagging feeling that it's right in front of my face.

I have had more than a few of those moments. I hope you're able to pinpoint it.

[TrillumHunter]

What about Play-Do at the preschool? That's a no-no for gluten-free kids, right? Mine are past that stage so I'm not sure.

For you, what about your gallbladder? I struggled with nausea until I had it out. It was full of garbage and making me very sick.

I agree with the pp about some of those products but maybe there is another issue?

[taweavmo3]

That's a tough one. I have some thoughts.....like the other poster said, coffee may be killing your stomach. I reluctantly gave it up four weeks ago b/c I couldn't figure out why my stomach was so sensitive. I gave up coffee, and feel a TON better. The first few days were rough, but I drank some Coke to tide me over until I could cut caffeine out completely. I won't lie, I still miss it, lol....but I'm not having stomach issues anymore and can eat more foods.

Also, I have a super sensitive daughter, and I really try to stay away from mainstream processed foods that aren't made in a gluten free facility. I have been right where you are, where I'm combing through everything b/c she's acting like she's been glutened, but can't find the hidden source. Sometimes, as frustrating as it is, even the products labeled gluten free still have gluten in them. Rice Dream is one example, it still has barley malt, but it is less than 20ppm so it can now be labeled gluten free (and they took barley malt off of the ingredients list despite it still being in there). Many people still react to any amount of gluten, even if it is supposed to be in the safe range. I stick with mixes from companies I trust like Namste, Enjoy Life, Kinnikinnick and Glutino.

Oh, also consider the Chex cereal. My dd does react to Chex. I'm not sure why, b/c it is gluten free, but she has been much better since I quit buying Chex. I have noticed a few others on here questioning the Chex cereal too, it seems some react and some don't.

Hope that helps! It is frustrating to cut out more foods, I know. I have found that this diet is a neverending learning process...we've been at this for 4 years, and still make mistakes or have to cut out another food that we thought was safe. That's why this board comes in so handy! Good luck to you.

[wild fisher]

I can eat them 10 times with no problem, then the 11th time whammy. Then I started reacting to something I was eating every day.

This happens to me and it makes me feel like I'm psychotic. Do you know why this happens. One example out of many. I ate a bannana with Natural peanut butter and honey. I felt fine for a couple of weeks then whamo my stomach is bloated to it's full compacity and painful. I've given up Soy and Dairy for the past few months. I felt great for about a week then right back to feeling like I've been glutened.

[ksymonds84]

I've been gluten free for over a year and a half (except during the gluten challenge that I had to end recently) and have found that symptoms will pop up and you sometimes just can't find the cause. It could be hidden gluten such as reacting to 20 ppm or just that our system isn't completely healed (some adults can take 2 years or more depending on damage), or other intolerances that we haven't figured out. Lay's chips for instance is made in a shared facility and maybe 10 bags were okay but the 11th got some contamination. Its frustrating I know!

[tom]

If you do not believe me, believe them, they are the ones certifying our gluten-free foods.

I suppose I shouldn't be surprised that you've missed the point of my post, which wasn't about testing ppm, but rather this assertion:

Most grains have a measurable amount of gluten in them,

[Mtndog]

Several people have posted that they react to the gluten-free Chex. I also can't eat Frito Lay products- I react to their chips, Fritos Cheetos- even though they are technically gluten-free. I eat Utz chips with no problem (and think they are even tastier!).

I've also had problems with Starbuck's and CC but since it's both you and your son reacting to something- I would eliminate all the processed foods you BOTH eat and go from there.

Hope you both feel better soon!

[darlindeb25]

A friend mentioned this in another forum, and I felt it may pretain to you:

My super, duper silly girl cannot be in a shared space without getting sick. She doesn't like church because it makes her sick. Just playing in the nursery is enough to get her reacting, even when no food is present. Playdoh is another huge issue that covers EVERYTHING. We are getting ready to give preschool a go, but we are working hard to make the space as clean as possible, and I have no idea if it will work. We have had issues with gluten exposure from caregivers that come to our home! We have had to implement protocols to ensure that the caregivers remain gluten free. When one of our babysitters started working at Huddle House and riding with her gluten eating dogs to work (again - that was against protocol because of earlier issues with gluten eating dog contact with the same clothes that she wore to work, but she had lost her car and was getting a ride from her mom that thought she was being a PITA), we started having gluten CC issues AGAIN.

TOM

(darlindeb25 @ Jul 11 2009, 05:14 AM)

If you do not believe me, believe them, they are the ones certifying our gluten-free foods.

I suppose I shouldn't be surprised that you've missed the point of my post, which wasn't about testing ppm, but rather this assertion:

I wasn't directing that statement at anyone...I have removed it, I guess you thought I was directing it at you...I wasn't. I was so disappointed when I found out about grains, and that the foods we trust can still contain gluten. I work so hard at being gluten free, and at every corner I run into a new intolerance. BUT, are they intolerance's or cross contaiminations? Two cookies can mess me up for 3 weeks, and I find it so unfair. I often say I wish I was ONLY celiac, and not so sensitive.