Anyone Have Any Tips On How To 'trace' Gluten?

[chick2ba]

My main reactions are delayed by a full 24-hrs, so it's really hard to figure out what I had the day before that was contaminated.. especially when my diet consists of no 'high-risk items' (no eating out, no 'mainstream' processed foods, etc..) I am sick of all these mysterious, once-a-week glutenings that occur after eating nothing but safe/washed fresh meats, fresh veggies, fresh fruits, Tinkyada pasta, Enjoy Life cookies, Lundberg rice chips and Envirokidz cereal (no dairy)!!

I keep a detailed food diary and it doesn't help-- sometimes it shows me getting sick from food I prepared two days ago that was fine when I first ate it!! I know the reactions are gluten because these stupid DH bumps pop up on my hands-- they are the first sign that tomorrow will be a very bad day.

Sorry.. frustrated.

[Kaycee]

I am sorry, but I would like to help, but it seems to me you are doing everything I would recommend doing, especially in having a food diary. Obviously you have not seen any patterns emerging.

It could be your toothpaste, makeup, shampoos, vitamins etc.

Are there other people in your house that eat gluten? Could it be a case of cc?

Sorry I can't be anymore help than that.

I hope you find out what it is before long

Catherine

[oceangirl]

I am sorry, but I would like to help, but it seems to me you are doing everything I would recommend doing, especially in having a food diary. Obviously you have not seen any patterns emerging.

It could be your toothpaste, makeup, shampoos, vitamins etc.

Are there other people in your house that eat gluten? Could it be a case of cc?

Sorry I can't be anymore help than that.

I hope you find out what it is before long

Catherine

I wish I could help as well, but I have to tell you- you sound like me! I feel like I cannot get more than a day or so in without feeling symptomatic and I eat like you and keep a diary as well! I'm beginning to lose it! I eat only Erewhon rice krisps and Cape Cod chips for processed food, the rest fresh meat, fish, veggies and fruits. No dairy, corn or soy. I am beginning to feel I won't get well again. Sorry to go off. But, my plan right now is to ask my Gyn (who I'm seeing for an annual next week) to rerun the Celiac panel to see where my numbers are. I figure if gluten is somehow getting in, it'll show up, if not, I guess I'll have to go to whatever Plan B will be. Maybe you should check your numbers? Find out for sure it's gluten and not some other intolerance? Good luck to you. Sorry I can't be of more help.

lisa

[ravenwoodglass]

I keep a detailed food diary and it doesn't help-- sometimes it shows me getting sick from food I prepared two days ago that was fine when I first ate it!! I know the reactions are gluten because these stupid DH bumps pop up on my hands-- they are the first sign that tomorrow will be a very bad day.

Sorry.. frustrated.

This stood out to me. Are there gluten eaters in your house? Did you throughly degluten (clean) your frig when you were diagnosed? You mention that the bumps show up first on your hands. This could also be significant. Do you do any arts and crafts type of things? Things that would use paint, glue, clay, cement type products, drywall compound, wall paper or paste? I am assuming you have checked your toiletries and lotions for hidden gluten, if not that would be the first thing I would check. I hope you figure this out soon, I also have DH and it took me a long time to ferret out all the sources of contamination.

[Guhlia]

Please keep in mind that gluten can hids in many, many different forms. Here are just a few things that you may want to think about:

Do you come in contact with any glues (in products, on products, etc)?

Are your lotions/body products garuanteed by the manufacturer to be gluten free?

Are there gluten eaters in your household that could be contaminating you?

Do you bite your nails (especially after touching door knobs, shopping carts, public area fixtures)?

Do you lick stamps or envelopes?

Are you eating mainstream processed products that could be contaminated?

Are your makeups, chapsticks, lipsticks gluten free?

Do you kiss any gluten eaters (on the lips, cheeks, hands, etc)?

Have you checked your food journal for other trends or intolerances?

Are you using a glutenous toaster, bread macine, pasta maker, even microwave or oven?

Are your soaps and laundry detergents gluten free?

Do you use arts and crafts products or buy pre-made arts and crafts products?

Do you wash your hands frequently when out?

Do you have a pet (dog,cat,bird,fish,etc) that may not be gluten free?

I hope these can give you a good start looking for what may be making you sick.

[Nantzie]

I definitely have problems with personal care products like shampoo. I never realized how much I mess with my hair until I figured out my favorite conditioner had gluten in it. I was sure I didn't have to worry about it, but once I paid attention to how often I touched my hair, and then having to wash my hands just because I touched my hair. It was so much easier to switch to something gluten-free.

Nancy

[Nancym]

How about backing off the "gluten-free" replacement foods for awhile? Go to eating foods you make yourself like meat, veggies, fruits. Then, if you need to, slowly introduce the gluten-free stuff and see if your reaction is from that.

[Guest cassidy]

How frustrating. The only thing I can say is that there is something that is causing it. I have been gluten-free for 9 months now and I usually go at least 2 months at a time without glutening myself. So, it isn't like it is impossible, there is probably just one thing that you aren't thinking about that is driving you crazy!

Are you using the same pots & pans as before? What about any spices? I hope you figure it out.

[chick2ba]

Thanks everyone for the great advice.... I think I'll just have to give up my cereals, cookies and chips for awhile and see if that makes a difference. I never thought I would willingly cut my diet down that much, but I just want to be well and finish college.

Before I moved into my own place and got new pots and pans, toaster, etc.. I was getting sick at least three times a week, probably from cc with my roommates.

I WAS re-heating 'old' food on paper plates... I wonder if it's coming from that! Creepy.

The only craft-type thing I do is crochet (please tell me yarn is gluten-free!!). If I get a bad enough case of DH, they appear elsewhere, but the hands always come first.

I have not kissed my boyfriend in over 6 months - he doesn't want to get me sick. I also NEVER put my hands near my lips unless they have been washed several times.

Due to time and money, I don't wear any makeup, but do wash my face in the mornings with Neutrogena Oil-free Acne scrub. All lotions scare me, so I get by without them. The very rare times I use make-up, like once every two months, I notate it in my diary and notice no effects.

I use Colgate toothpaste, Aussie shampoo, Palmolive dish detergent, Dove hand soap, Burt's bees lip balm, Cheer laundry soap, and Pantene curly hair mousse. None of these have any noticable wheat or barley or oats in them (threw out a hair product that did). Do you think it could still be hidden in some of those 8-syllable chemical names listed in the ingredients?? Has anyone had any problems with any of these items? (these are seriously the only 'products' I use besides contact solution!!) I'll probably call these companies soon and get a double-check anyway.

It seems to be so random, that it MUST be coming from a 'non-food' source. Do you think chalkboard chalk contains wheat? I sit in the front row during lecture and sometimes can see the little dust particles floating around. This disease makes me feel like a paranoid freak!

Thanks so much for listening.

Ashley

[gabby]

Hi,

Here's what I do when I'm trying to track down some elusive bit of gluten. I only go to these lengths when something is making me sick and I need to turn into Sherlock Holmes to dig up the possible culprits.

I call the manufacturer and ask these 4 very specific questions. The answers will tell you everything you want to know.

1. Once you send your products off to be processed and packaged, are your products made in a facility that also processes gluten-containing products? (just look for a straight yes or no answer.)

2. Do you test your FINISHED product for gluten levels? (You want to know about the finished product, not the ingredients.)

3. How often do you test the FINISHED product for gluten levels? (get a specific answer: once a week, every 10th box, etc.)

Now here's the question that has caused manufacturers to HANG UP on me.

4. What is the highest level of gluten that you will allow in your FINISHED products? (get a specific here: 200ppm, 150ppm, zero, etc)

Note: again, I ONLY go to this trouble if there is a product that I suspect is making me sick. In the last few years, I have only had to make these phone calls 3 or 4 times. And each time I found my elusive culprit. Sometimes the manufacturers are nasty, but sometimes they are quite happy that you've helped them find a kink in their chain and they will either change the processing...or change their labelling (I had this happen with one potato chip manufacturer who took the gluten-free term off the packaging).

Give it a try, and post your experiences here when you get your answers!

hope this helps,

[hineini]

I don't have any good advice, but I do want to express support - I am dealing with the same thing. It is becoming clear it is not just gluten that is making me sick, since I sometimes get sick even when I control fully everything I ingest.

I would definitely consider the ingredients of your body care products.

Also look at whether someone else could be using the cutting board you're using, or sticking a glutened knife into the butter or whatnot.

I am right now trying to figure out if I got glutened last night from some gluten crumbs that might have been in the shortening I used for making biscuit topping for a gluten-free cobbler... Or if I'm reacting to the cheese I put on my Tinkyada pasta (I'm casein intolerant so shouldn't be eating dairy, but it doesn't usually make me sick in small quantities, just a little gassy).

Let us know what you figure out

[oceangirl]

I don't have any good advice, but I do want to express support - I am dealing with the same thing. It is becoming clear it is not just gluten that is making me sick, since I sometimes get sick even when I control fully everything I ingest.

I would definitely consider the ingredients of your body care products.

Also look at whether someone else could be using the cutting board you're using, or sticking a glutened knife into the butter or whatnot.

I am right now trying to figure out if I got glutened last night from some gluten crumbs that might have been in the shortening I used for making biscuit topping for a gluten-free cobbler... Or if I'm reacting to the cheese I put on my Tinkyada pasta (I'm casein intolerant so shouldn't be eating dairy, but it doesn't usually make me sick in small quantities, just a little gassy).

Let us know what you figure out

Chick2ba

That seems just horrible to "not have kissed your boyfriend" in 6 months! Maybe just be sure he hasn't had any gluten prior to a bit of smooching. Maybe he'd even consider being gluten-free himself? Kissing is healing. Just a thought. Good luck to you!

lisa

[chick2ba]

So much for the only fruit, veggies and meat deal. Had a small pear last night and got glutened (DH, trembling, sudden fatigue, nausea.. definitely gluten... fruits have never bothered me before). Washed it and my hands off for at least two minutes under running water, but I guess it wasn't enough. I even ate around the sticker.

Every time I want to kiss him, I remember how damn sensitive I am. We decided when I am well for at least two weeks, then maybe we'll risk it-- but since last Christmas, that hasn't happened.

I've started calling companies about all my toiletries and cleaning supplies. So far Cheer has declined to disclose if there is gluten in their laundry detergent.. they said the ingredients were patented and I needed a doctor's note sent to them, then wouldn't tell me where to send my "medical documentation". God, it's not like I wanted a full ingredients list with mixing instructions!

Oh well, at least that was like three good days in a row.