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David in Seattle

Obscure Sources Of Gluten?

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After about 3 months gluten free, I am feeling about the same. I don't have an official diagnosis of Celiac, but after no results from 2 GI docs (3 at this point) on December 17, 2009 I eliminated gluten on my own, an experiment which is at least supported by my symptoms. Nearly 3 months later, I would say I'm slightly improved, but certainly not 100%. I have gone out of my way to eliminate obscure ingredients like vegetable proteins, etc., though I don't tend to eat much "prepared food" anyway. I have read here recently that potato chips can be an issue. I had been using those as daily snacks (Lays, ingredients "Potatoes, sunflower oil and/or corn oil, salt") but apparently some believe they may be paths for cross contamination, so I eliminated them about a week ago. I just got some new multivitamins which are clearly labeled "gluten free". About the only other item in my diet is low fat "Jimmy Dean" breakfast sausage, one small patty of which I have every morning. Again, no obvious culprits on the label, except "spice", which I guess is a possibility. I'd like to know what people here eat for breakfast. I used to love oatmeal with a mixture of dried fruit & nuts tossed in, but, well, YOU KNOW. Everything else I eat I prepare myself from scratch, and it's a pretty narrow diet, at this point. Rice, chicken, broths marked "gluten free", romaine lettuce, fish and other fresh seafood, a granola from TJ's marked "gluten free". Boring as hell, but no gluten, I HOPE. Also, I eliminated dairy about 2 weeks ago. What about tooth paste? What are some other, truly obscure possibilities I should keep in mind?

TIA

David

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You should go through all your personal care products, soaps, shampoo, aftershave, chapstick, basically anything you put on your body.

Pets are another potential source of contamination, particularly if you have a dog. Pet foods are often gluten loaded and if you can't do a gluten free food at least be scrupulous about handwashing even after petting your dog/cat before handling food.

Have your taken care of all your cooking utensils, new toaster, colander/sieve, wooden and plastic spoons and storage containers, re-seasoned cast iron pans after a cleaning cycle in the oven, thrown out scratched nonstick pans. Wooden cutting boards. These are all sources of potential cross-contamination that come immediately to mind.

You are probably aware of most of these potential food sources:

bouillon cubes

brown rice syrup

candy

chips/potato chips

cold cuts, hot dogs, salami, sausage

communion wafers

French fries

gravy

imitation fish

matzo

rice mixes

salad dressings

sauces

seasoned tortilla chips

self-basting turkey

soups

soy sauce

vegetables in sauce

Any of the following words on food labels may mean that a grain containing gluten has been used

* stabilizer

* starch

* flavoring

* emulsifier

* hydrolyzed

* plant protein

If there is wheat, it must be labelled in the U.S., but not rye or barley.

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Gads shroomie! You just reminded how complex this whole thing can be :blink: .

David, some people find that giving up gluten unmasks symptoms caused by other foods. Follow Neroli's suggestions by all means, but also keep an eye on which other major allergens you're eating (casein, corn, soy, eggs). Consider keeping a food diary to find out if there is something else you might not want to be eating.

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I'd eliminate soy and yeast for the time being, and maybe even nightshades. Also, those Jimmy Dean sausages are suspect... did you call the company? So many of the really yummy processed meats have fillers in them. (I try not to think about it...)

You could also try an Enterolab test and see what you're reacting to. I did it to confirm my suspicions about gluten, but was surprised when casein, soy and yeast came back positive, too. I always thought I was lactose intolerant... had no clue what casein even was.

If your anti-gliadin is still high, then you know you're still getting gluten from somewhere. I think it's worth the money to know for sure.

Simplify your diet to the point where you know every single thing you're eating is basic food: veggies, fruits, unprocessed meats, plain rice. Yea, it's totally boring, but if feeling better is the result, then it's worth it, right?

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I totally agree with all the advice given by Shroom and Jess. Sometimes after being gluten-free for a time, we can become (or discover) other intolerances.

Jimmy Dean sausage is fine--I eat it regularly.

Most toothpaste is perfectly safe. Certainly Colgate and Crest which are readily available.

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It took 7 months totally off gluten to not be so terribly fatigued any more. I then woke up one morning and was not so awfully fatigued.

So, it might take a while even on a good gluten-free diet.

Also, check blood levels og b-12 and vitamin D and maybe thyroid tests (because there is a connection with that and gluten)

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I had a similar problem and I discovered that foods containing xanthan gum gave me the same symptoms as ingesting gluten. Almost all gluten-free salad dressings, sauces, and baked goods contain this ingredient. Guar Gum is sometimes used instead of xanthan gum and it doesn't cause any alergic reaction. Some products that I've tried and enjoyed: Betty Crocker Devil's Food Gluten Free Cake Mix, Mrs. Denson's Quinoa Macaroon Cookies, Mezzetta Napa Valley Bistro Artichoke Marinara and 505 Southwestern Chunky Salsa. Hope this helps you, I know how frustrating it can be...

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I'll take issue with or comment on some of these potential food source problems.

bouillon cubes -- maybe I'm wrong, but can anybody name one that definitely has gluten?

cold cuts, hot dogs, salami, sausage - in fact, virtually all of these are gluten-free, at least in the U.S. For example, now that Nathan's has eliminated wheat, I don't know of any hot dog that has gluten. Virtually every line of cold cuts is either completely gluten-free or has just one two meats with gluten. And it's always wheat, so it will be listed. I've never found a salami with gluten.

salad dressings -- vast majority are gluten-free. Look for wheat.

self-basting turkey -- never in more than 8 years found one with gluten.

soy sauce -- most indeed have wheat, but it will be listed. Never found one with barley.

Any of the following words on food labels may mean that a grain containing gluten has been used

* starch -- starch simply does not come from barley or rye. And in the U.S. if it comes from wheat, it must be listed as such.

If there is wheat, it must be labeled in the U.S., but not rye or barley -- true, but in more than 8 years I've never seen rye hidden in an ingredient. And barley is virtually always listed as malt.

I'm not saying you shouldn't check ingredients carefully.

richard

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In the US and Canada, the single word "starch" in an ingredient list must, by law, be corn starch. Any other starch must be labeled with the name of the source.

US: CPG Sec. 578.100.

Canada: Food & Drug Regulation B.13.011 .

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Thanks for the replies. I am eating a pretty simple, predominantly "whole ingredient" diet. About the only "prepared" things I'm eating now aside from the sausage (which has nothing of concern on the label other than "spice") are the vegetable stock and granola from Trader Joes, both labeled "gluten free". Maybe there was some residual effect from the chips I only recently eliminated.

So, IS toothpaste on issue, in anyone's experience? Of course, you don't generally swallow it, but you don't generally swallow lipstick either.

Not GENERALLY... :lol:

It seems like there must be some realistic cutoff point in this. The sausage, for example. A tiny fraction of the mixture to begin with. Suppose one of the ingredients in the spice blend was dusted with some grain derivative in processing so it would flow better (which I have read is done occasionally). How much gluten could possibly be in a single serving? Micrograms?

David

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David, everyone has their own level of sensitivity to gluten Some people react to even the tiniest speck, others can quite happily eat foods "processed on the same lines as". You are going to have to find out for yourself what your particular level of sensitivity is. It pays to be really, really strict at first, and then you can experiment a little and see how you react. To start off with you have to assume that you are a super sensitive. :)

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I don't eat Jimmy Dean sausage anymore. I had tried adding it into my diet not too long ago and just kept feeling worse. So out it went. I don't think it was gluten, but I have problems with other foods, so it may have been something in the spices, or something else I haven't identified. Anyway, just saying you have to consider other food intolerances can have a bad effect on you.

Vitamins, coffee, tea, any drinks at all can cause problems. A small amount of something ingested every day is all it takes to cause your system to keep reacting. One that got me was a multivitamin with oat grass in it. Darn bottle had so many ingredients listed in such tiny type I didn't pick it out. I avoid the multivitamins now and buy ones with a few ingredients, except for my B complex which has lots of B vitamins.

One thing to try is to eliminate all of the vitamins for a week and then add them in one at a time. You can do this same process for foods also. Eliminate one for a week and then add it back. You can also use baking soda or salt to brush your teeth instead of store bought toothpaste.

Being celiac kind of leads us to be food detectives for our bodies. Remember also that a gluten-free label on processed foods does not mean total 100% no gluten. It just means the product has less than the allowed amount of gluten to get a gluten-free label. So eating a lot of gluten-free products with just a little tiny bit of gluten can be a bad idea. I think this kind of problem is more likely with producers that have shared facilities, packaging, or production lines. Ones that have dedicated facilities and lines are probably much safer.

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In the US and Canada, the single word "starch" in an ingredient list must, by law, be corn starch. Any other starch must be labeled with the name of the source.

US: CPG Sec. 578.100.

Canada: Food & Drug Regulation B.13.011 .

Good info! Thank you, Peter.

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I am highly sensitive and find that I cannot use Trader Joe's products if they are processed in a factory or on a line that also processes wheat.

Toothpaste: So far, I do best with Colgate Fluroride Cavity Protection formula. I have had to eliminate other brands, Sensodyne included. I have also stopped using Colgate Total.

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David,

Try giving up the granola. Even if it has gluten free oatmeal in it, some gluten intolerant individuals react to oats.

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HEY! I have the PERFECT gluten free diet. You just eat NOTHING! So tomorrow, I'm starting on the all-nothing diet. And of course, no SOAP. And there MAY BE some gluten in the rubber they used on the elastic band of my boxers (the dye in my jeans, the threads used to attach the buttons to my shirt... ), so OUT THEY ALL GO! Sure, I'll be naked for awhile, but since I can't use SOAP or DEODORANT anymore, nobody's going to want to get near me anyway! And with no shaving cream, that beard's gonna get prettttt-y long, I'm sure it will only be a matter of months before I can just wrap it around me & hit the town! The weirdness of all that will be more than made up for by how SKINNY I'll be :D

Can I have my old life back now??? :(

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Be sure to find a warm grate to stand over, it'll be chilly tomorrow and no you can't have your old life back because your old life sucked.

The transition is hard, I'll give you that, but once you're through to the other side, and you suddenly remember that this is how you used to feel 20 years ago, you'll gladly go naked just to celebrate your rebirth. There is nothing so hard as living life sick, and when you've overcome that, you will understand and appreciate the core of strength that you have created in yourself.

Life will come back, and it will amaze you with it's richness and beauty.

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Be sure to find a warm grate to stand over, it'll be chilly tomorrow and no you can't have your old life back because your old life sucked.

No, no, no!!!! I meant BEFORE that!!! :D

Thanks for the supportive thoughts, Jestgar. I appreciate it very much.

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No, no, no!!!! I meant BEFORE that!!! :D

Thanks for the supportive thoughts, Jestgar. I appreciate it very much.

:)

Welcome back to the world of the living.

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I hope you were putting humor into this. On the serious side, that is exactly how I felt. I question everything that goes into or on my body.

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Thanks for the replies. I am eating a pretty simple, predominantly "whole ingredient" diet. About the only "prepared" things I'm eating now aside from the sausage (which has nothing of concern on the label other than "spice") are the vegetable stock and granola from Trader Joes, both labeled "gluten free". Maybe there was some residual effect from the chips I only recently eliminated.

So, IS toothpaste on issue, in anyone's experience? Of course, you don't generally swallow it, but you don't generally swallow lipstick either.

Not GENERALLY... :lol:

I gave up on toothpaste and was using only baking soda for a while to see if that would make things better. One day I just decided to go back to Crest and by the time I was done brushing with a medium bristle brush (which is the same I would use with the baking soda) my gums were bleeding pretty badly. This was never a problem with the baking soda even though I felt I had to brush longer because it wasn't toothpaste. I was going to try some Tom's of Maine but haven't gotten any as of yet.

As to things like salad dressing.. too many have soy and high fructose corn syrup. I can't tolerate either at present.

Nightshades are also a culprit for me so no tomatoes, potatoes, eggplant, tobacco. In keeping with the antiinflammatory diet I also avoid legumes and my respiratory health has been much better as a result as well as minimizing my rheumatoid arthritis flares. I use Dove for sensitive skin and make sure we use All with no perfumes, etc. That seems to help as well.

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I'll take issue with or comment on some of these potential food source problems.

bouillon cubes -- maybe I'm wrong, but can anybody name one that definitely has gluten?

cold cuts, hot dogs, salami, sausage - in fact, virtually all of these are gluten-free, at least in the U.S. For example, now that Nathan's has eliminated wheat, I don't know of any hot dog that has gluten. Virtually every line of cold cuts is either completely gluten-free or has just one two meats with gluten. And it's always wheat, so it will be listed. I've never found a salami with gluten.

salad dressings -- vast majority are gluten-free. Look for wheat.

self-basting turkey -- never in more than 8 years found one with gluten.

soy sauce -- most indeed have wheat, but it will be listed. Never found one with barley.

Any of the following words on food labels may mean that a grain containing gluten has been used

* starch -- starch simply does not come from barley or rye. And in the U.S. if it comes from wheat, it must be listed as such.

If there is wheat, it must be labeled in the U.S., but not rye or barley -- true, but in more than 8 years I've never seen rye hidden in an ingredient. And barley is virtually always listed as malt.

I'm not saying you shouldn't check ingredients carefully.

richard

Wyler's beef bouillon cubes have "wheat gluten" listed as an ingredient. The chicken ones do not, but I'll stick with Herb-Ox anyway.

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Herb-Ox Beef Instant Bouillon is Gluten Free and no MSG added. I've bought both at my local Wal-Mart. I prefer the instant bouillon over the cubes.

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HEY! I have the PERFECT gluten free diet. You just eat NOTHING! So tomorrow, I'm starting on the all-nothing diet. And of course, no SOAP. And there MAY BE some gluten in the rubber they used on the elastic band of my boxers (the dye in my jeans, the threads used to attach the buttons to my shirt... ), so OUT THEY ALL GO! Sure, I'll be naked for awhile, but since I can't use SOAP or DEODORANT anymore, nobody's going to want to get near me anyway! And with no shaving cream, that beard's gonna get prettttt-y long, I'm sure it will only be a matter of months before I can just wrap it around me & hit the town! The weirdness of all that will be more than made up for by how SKINNY I'll be :D

Can I have my old life back now??? :(

David....I highly suggest you read Dr. Peter Green's newest version of "Celiac Disease: The Hidden Epidemic.It's about as excellent a reference book as there is. He goes into detail about what you have to do in reality to live gluten free successfully.

It is not absolutely necessary to use gluten-free topical products, unless you have an additional skin allergy to wheat. I do not screen my products, except for lipstick, because I do not eat them, even accidentally. Only you can decide how careful you are or are willing to be. You have to ingest soap to cause a reaction...it cannot be absorbed through your skin. I have been gluten-free for 5 years now and my repeat blood work has been stellar all along, so I know I am not ingesting anything. It can be done quite successfully but it's mainly a personal choice.

As far as toothpaste is concerned, the vast majority of toothpastes and preparations/medications used at your dentist are gluten-free. I am a regular at the dentist and have yet to have a problem.....except for once when I had impressions done and the formula used was basically guar gum and a few other gums.

I react to those when I ingest more than a small amount but have had no gluten related problems. As always, read the labels, but toothpaste is not something to worry about generally.

Relax and realize that after a short while, you'll get the hang of things and everything will become second nature. I feel like I have always been gluten-free

and am extremely comfortable with dining out and figuring out what legitimately contains gluten and what does not. You will too! :D

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Debbie Downer here, and I don't want to be: Soap, etc. and gluten -- watch for papercuts, other cuts, etc. If there is an opening in the skin, the gluten will get in. Also, if shampoo or conditioner gets in your mouth while rinsing.

David in Seattle: Your last post made me laugh so much! Then I wanted to cry because I COMPLETELY understand how you feel. I'm still working through it all, but as Jestgar said, it is true: my old life sucked and going through the process of working toward getting to the other side has been waaaaaay worth it.

I feel better than I have felt in goodness knows how long, even with the setbacks and aggravation of getting cc'd.

David, you're a welcome addition to this forum! Great sense of humor, outspoken and real. Great to have you here!

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