Omg! How Sensitive To Gluten Can One Be?

[joyceelaine]

I haven't been diagnosed with celiac disease but i just started a gluten-free diet last night, or should I say, tried. I eat out a lot, and was just reading about some fast food places. I figured I could eat sandwiches and the like as long as I didn't eat the bun, and I read that the bun can't even touch the meat? And all this stuff about cross-contamination with food handling? I would think the amount of gluten that might be transferred would be miniscule. When I was first reading the diet guidelines I was thinking, this isn't so bad, I can do this, but now I'm really discouraged. I was hoping that any decrease in gluten would have to be an improvement, but it seems like an all or nothing thing. I should mention I hate to cook.......(hence the eating out concerns....)

[CeliacMom2008]

If you don't mind my asking, why are you eating gluten free? You say you don't have Celiac. Is it for health reasons or because you want to lose weight or something? If it's part of a weight loss diet, cross contamination is not an issue at all. If it is because you suspect you have Celiace, you should consider getting a diagnosis first. If it's because you think you might have an intolerance to gluten, again, you shoudl rule out Celiac. How careful you need to be depends on why you're doing it. With Celiac disease, you pretty much have to stick to 100% gluten free - no cross contamination. With weight diet - no biggie if you get glutened, just start over on the next meal. With intolerance, you may suffer for awhile, but the gluten isn't setting off an auto-immune response that will damage your small intestines.

[joyceelaine]

If you don't mind my asking, why are you eating gluten free? You say you don't have Celiac. Is it for health reasons or because you want to lose weight or something? If it's part of a weight loss diet, cross contamination is not an issue at all. If it is because you suspect you have Celiace, you should consider getting a diagnosis first. If it's because you think you might have an intolerance to gluten, again, you shoudl rule out Celiac. How careful you need to be depends on why you're doing it. With Celiac disease, you pretty much have to stick to 100% gluten free - no cross contamination. With weight diet - no biggie if you get glutened, just start over on the next meal. With intolerance, you may suffer for awhile, but the gluten isn't setting off an auto-immune response that will damage your small intestines.

Oh sorry, I didn't explain myself. I think I may have celiac disease. I just finished a bottle of digestive enzymes hoping that would help, but it didn't make one iota of a difference. I have had bad cramping pain and diarrhea for almost every day for the past 2 (at least) years. (See my first newcomer post on the pre-dignoses,testing and symptoms forum) I had some tests 4 years ago which the doctor said were negative, but not all tests were even performed that were on the labwork, like endomysial AB IGA, endomysial AB titer, and tTG AB IGG. It gave that message "TNP- reflex testing not required". Whats that about?Were all the proper tests not done?

I have numerous symptoms, and been checked for numerous things and nothing has come to light about whats causing this. The gi is willing to let it go as irritable bowel which I've had all my life, but only a few times a year, not EVERY DAY like now. A few years ago I inexplicably lost 60 pounds in a very short time, had tests, nothing was found. Recently I was so sure I had Sjogrens, but again, testing was negative. Every time I look up some of my symptoms they always seem to point towards an autoimmune diseases.

So these are my symptoms, they may not all have to do with celiac, but maybe someone can help

shed a light on them...bad cramping, back pain, and foul gas with each bm,which is usually very loose and floating. Also have low white blood cell count, tinnitis, restless legs, and arm and leg muscles feel very weak and achy, sinus headaches constantly,

thyroid nodule,reflux,hiatal hernia,insomnia even with taking an Ambien 10 mg every night, heavy metal poisioning for lead and especially mercury which was 3 times higher than the norm, arthritis,fatigue, low blood pressure, and co-infected with 3 tick-borne diseases. Oh, and that 60 pound unintentional weight loss.( My family thought I was anorexic)

Would it seem that the testing was inadequate, or were those the best ones to tell.? Anyway, I was going to try the diet first and see if it made a difference, then see a doctor if it did, for confirmation. I get so depressed going for all these tests only to have them be negative. I know there's someting wrong, wish I could find out what...

[ang1e0251]

What I think is that if you're not that committed, you're doomed to fail. It seems to me you really need a dx in order to take the mental leap to the diet. Why don't you get another blood test? Now you know the tests to ask for. Make sure you're still eating gluten so it has every chance of coming out right. After the test then post the results here. That way if there is something hinky about you results, someone can tell you. Negative bloodwork isn't the final chapter for many people.

Those tickborn illnesses, are you cured of those? I understand that Lyme can cause similar symptoms to celiac disease.

[MySuicidalTurtle]

You have to think about gluten differently. Think of it as poison to your body. Would you eat meat that had just touched cleaning chemicals? I know I wouldn't. Any little bit of gluten will hurt if you have Celiac Disease.

[Jestgar]

Another analogy people use is raw chicken. Would you pull a piece of raw chicken off your hamburger patty, then eat it anyway?

[joyceelaine]

Ang1eo251- At this point I'm trying to do it 100%. Took my list of yeses and nos to the store, and also checked out the gluten-free aisle (found some delicious chocolate cookies!)What I'm concerned about is all those tips people on the board post, that I would not have known about otherwise. The food lists don't tell you all the little "behind the scenes" scenarios.

I highly doubt I am cured of the lyme diseases. I first got it in 1997 I was treated with 2 weeks of antibiotics which they later found out was an inadeqate length of treatment to kill it. I went back 7 years later to a Lyme literate doctor and was retested and still had lyme plus 2 others. So it has been existing and spreading for 6 years, (actually 12 years now) and the longer you have it the more it digs in and is harder to kill. I went for 2 years straight of trying different antibiotics and nothing helped, except the last resort, intravenous treament helped somewhat, but the insurance won't let you take it more than 2 months.

MySuicidal Turtle and Jestgar- Your analogies really put things in perspective. Now I understand why it would be such a big deal. Its that kind ofexplanation they don't tell you on the medical websites. Thanks so much, I'm thrilled with all the great responses I got today.

[darlindeb25]

With Celiac disease, you pretty much have to stick to 100% gluten free - no cross contamination

This is just as true when you have a gluten intolerance, and not "pretty much"...absolutely must be gluten free. Me, I need to be 100% gluten free.

With intolerance, you may suffer for awhile, but the gluten isn't setting off an auto-immune response that will damage your small intestines.

This is not completely true. Celiac disease is a tiny part of gluten intolerance. When you are gluten intolerant, and you eat gluten, you also have an auto-immune response to the gluten. The purpose of the immune system is to attack foreign invaders, such as bacteria, viruses, or even food....the difference is, with celiac disease, the immune system also attacks the body, meaning damaging the villi. With an intolerance, the immune system may not attack the villi, yet it does cause other reactions, sometimes a domino effect in some of us. Gluten intolerance is every bit as nasty to have as is celiac.

My sister is a doctor diagnosed celiac (endoscopy and blood work), Quest Labs say I am not. My sister and I had the very same auto-immune reactions to gluten...diarrhea, iron deficiency, she lost weight, I gained...and who's to say, 9 years ago when she was diagnosed, if I had the money then, I probably would have been diagnosed also...I just went gluten free with her out of necessity. I know, many diagnosed celiac's out there, have no idea what genes they have....if everyone was gene tested, I am betting doctors would have to change their theories.

From Dr. Wangen:

Inflammation is a direct result of the immune system being activated to do it's job. Because in gluten intolerance the immune system reacts to food, it has the potential to set off a wide range of inflammary conditions throughout the body.

An auto-immune response.

[Jestgar]

Celiac disease is a tiny part of gluten intolerance. When you are gluten intolerant, and you eat gluten, you also have an auto-immune response to the gluten.

OK, while I also believe this to be true, I have to clarify that it hasn't been shown to be the case. I actually don't even think it's been investigated...

[LDJofDenver]

...eat sandwiches and the like as long as I didn't eat the bun...

I just wanted to also mention that, believe it or not, lunch meat (deli cold cuts) can have gluten.

My son learned this the hard way, assuming "well, it's meat, so it's safe." Not so. Next time you're at your grocery deli counter have them hand you the big ball of turkey from which they will be slicing your lunchmeat - majority of them have an ingredients list that is a paragraph long, often including wheat to bind it. If in doubt (at your sandwich shop) you can always ask to see the packaging.

There are other things to consider as well, such as your toaster. If used for regular bread, you'll need to pick up a new toaster (yes, really).

You do need to think on the molecule level.

[darlindeb25]

OK, while I also believe this to be true, I have to clarify that it hasn't been shown to be the case. I actually don't even think it's been investigated...

The above response was to this:

Celiac disease is a tiny part of gluten intolerance. When you are gluten intolerant, and you eat gluten, you also have an auto-immune response to the gluten.

I know it has been investigated, this knowledge is from a doctor who is making it his life work to help those with gluten intolerance, a doctor whom I might add, is gluten intolerant himself. Any intolerance or allergy causes an immune response...that's what an intolerance or allergy is all about. Often times a gluten intolerant has more issues than a celiac.

Gluten intolerance as a whole has not been given the study it needs...they aren't even sure how to test for this yet. Even what they think they know about celiac disease is often times questionable. It's all still on a learning curve.

[Jestgar]

The above response was to this:

I know it has been investigated, this knowledge is from a doctor who is making it his life work to help those with gluten intolerance, a doctor whom I might add, is gluten intolerant himself.

Do you mean Dr Wangen? I haven't read his stuff.

I was meaning tested in some scientific, blinded-study sort of way.

[darlindeb25]

Do you mean Dr Wangen? I haven't read his stuff.

I was meaning tested in some scientific, blinded-study sort of way.

Yup, Dr. Steven Wangen. "Healthier Without Wheat" is the best gluten intolerance/celiac book I have read so far. I would love to have a doctor who has gluten intolerance, at least they would understand what you are dealing with.

My sleep doctor for sleep apnea, also has sleep apnea. He told me that often times doctors do have the same thing some of the patients have, but are too proud to say they do. My sleep doc told me which masks he finds to work the best, etc. I liked that.

As for a scientific blind study...they don't understand gluten intolerance, so they can't figure out where to start. Besides the fact, gluten free is the med, and that doesn't help the pharmacutical companies, so they have no backing for the studies. Dr. Wangen does have some studies listed in his book though.

[Jestgar]

I just want to casually throw in, in defense of scientists, I've been one for almost 25 years and not once during that time have I, or anyone in the labs I am in, or work with, have come anywhere close to doing anything funded by pharma. It's all been government funded.

[blueshift]

If anybody thinks I am going to eat any gluten at all just to get an accurate test reading, they are nuts and I told my doctor that. He agreed that if staying away from gluten allows me to read and comprehend and to go for a walk without feeling discomfort and constant twisting that occured for 56 straight years an suddenly disappeared by getting it out of my diet, then why take a painful test?

There is gluten in Sudafed. The doc had me on Mucinex for a while and I had no reaction. But when I took Mucinex Decongestant, I could tell that something in it had gluten.

One molecule of that gets in me and my bowel obstructs a few hours later. When I went to McDonald's one time they put a piece of grilled chicken on my salad which they said comes with it. It was sprinkled with herbs. They became irritated when I asked them if the spatula that touched that chicken also touched a piece of any bun during the day and if it was stored in the same drawer with other utensils. They looked puzzled so I told them to throw it out.

[wschmucks]

Another analogy people use is raw chicken. Would you pull a piece of raw chicken off your hamburger patty, then eat it anyway?

I prefer Dog poop. Would you put dog poop on your sand which and then set the poop aside and think your food was safe to eat? Or eat off a teflon pan that previously had dog poop in it-- kiss someone who just ate dog poop, share a drink with them? YEP NOOOOO WAYYYYYY