This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Well, hey. If they would honestly take my little uncontaminated bowl of fresh vegetables and raw meat, put some honestly uncontaminated gluten free sauce with it and cook it in a separate wok in the back that has never been used to cook gluten before, then that would be WONDERFUL!! But it's also a whole lot of trouble. It's a healthy and delicious way to eat. If I honestly thought I could eat in such a place without getting glutened, I would sure do it. But a lot of things would have to go right and I usually don't expect that much extra effort from the poor restaurant staff. It's a lot to ask. You're very fortunate to have such a place to go to.
Blood tests have never shown me deficient in any nutrient, even B12. And yet at about the same time I was suspected of having gluten issues, my fingernails began to create vertical ridges which worsened and remain to this day. I also have no moons except really small ones on my thumbs. I think I used to have them on the other fingers, but honestly can't remember. Just checked one of my undiagnosed children and they have no moons at all. My nails have also become brittle and crack off easily, when they used to be nice and pliable. Are these symptoms honestly considered from a medical standpoint as being indicative of nutrient malabsorption and/or celiac or are they more anecdotal or perhaps even just heredity or a part of normal aging? Just wondering about the science of it. I eat very, very well, by the way. No junk. Thanks so much!
Poor thing. I'm sorry you are being treated so badly by your doctors. Shame on them for making you doubt your own sanity.
Many of us know exactly how you feel. One day when this disease is fully understood, people who should have been helping us will hopefully look back and realize how unkind they have been. Many celiacs have been accused of being "crazy." It just goes with the territory.
You stay strong. You are on the right path. Don't let them discourage you or make you doubt what is obvious.
I ate frequently at a HuHot before my gluten free days. It was delicious and I really miss it. From what I remember, I don't see any way a celiac person could possibly eat there unless they actually had an entirely dedicated grill just for gluten free, which is unlikely. Also, being a buffet, the sauces are very likely cross contaminated by other customers dragging their spoons full of gluten-containing sauces across the tables of all the other sauces to their bowls. It's just unavoidable the way it is set up. From what I have been told, gluten is very sticky and tenacious by nature. It doesn't just wash off quickly with water or scrape off very easily, especially when cooked on. It would be particularly difficult in this situation because very gluten-containing sauces are constantly being quickly cooked over and over and over again on these same surfaces. I suppose it could eventually burn off under the right circumstances. I don't know the scientific technology regarding burnt gluten. But I have watched those entertaining cooks do their thing at HuHot and I don't see any way they could keep your food honestly uncontaminated for many, many reasons. Just my opinion, but I think it would be a huge gamble. So sorry. It's really good!
I'm sure there are similar doctors in Australia. But I'm pretty impressed with Dr. Rodney Ford who runs a famous pediatric clinic in New Zealand. Too far away? I've read his books and it sounds like he treats adults too. They sell his books on this site. Just a thought.
It is a conclusion I personally came to after reading many gluten books, articles and research papers on the subject. I can't tell you exactly which ones. I read voraciously. But I have enjoyed studying nutrition for several decades and it has always been assumed by most scientists that a powerful immune system was generally an asset and the ultimate key to maintaining good health in the hostile modern environment in which we live. That's why so many supplements and dietary suggestions focus around building up the immune system. If celiac disease is a malfunction of the human immune system's reaction to a specific substance (gliadin) due to a faulty genetic code and subsequent cellular miscommunication, then it seemed logical to me that the individual capability of each person's immune system to react (strong or weak) might directly be seen in the severity of their glutening symptoms. Therefore, there might be no such thing as more sensitive or less sensitive gluten intolerance. It might be more about what shape your own personal immune system is currently in, either because of genetics or a wearing out from overuse.
I should have stated it as my own theory in my post instead of implying it was fact. I do apologize.
I recall one article I read somewhere that said historians thought celiacs as a group tended to survive plagues for some odd reason. I don't know how factual that article was. Perhaps there was no truth in it. But if it were true, then you would have some information to build a case upon that the immune systems of celiacs might be innately stronger or at the very least more vigilant than the general public. It's just interesting. Of course, after a lifetime of undiagnosed celiac and an immune system constantly on red alert, it would stand to reason that it might eventually begin to wear out and weaken as well.
The original intend of my posting on this thread was to encourage people to not assume they can eat gluten just because they don't actually feel anything or have any overt symptoms. My theory was that maybe their personal immune system is weakened and not reacting properly anymore. The lack of symptoms could be very deceiving.
Thanks, Mtndog. I think I will go back and edit my initial post to correct it for posterity.
I'm afraid there is still some misunderstanding. There are hundreds of wonderful handmade soap companies, like even perhaps the Sungold you mentioned here, who make all natural unscented bars of soap. But if I am understanding your situation correctly, the issue with you isn't just lack of scent or the naturalness of a product. You have said you have a serious sensitivity to coconut products, which would also include palm. What I am saying is that nearly ALL soaps, even the natural handmade ones, contain coconut oil. They contain it because it makes them sudsy and that's what customers want. There are some out there made from all olive oil or all some other kind of oil, but you have to very specifically look for them. And then you have to call or email them to ask how and where they are made and if they would likely be contaminated with gluten or anything else you are allergic to. Once you master the making of your own, you will know absolutely for sure what is in your soap. But in the meantime, you can try to find someone else who already makes something that will temporarily work for you.
Try googling "100% olive oil castile natural handmade soap" and see what you get. I can't guarantee the quality of any product or the integrity of any company you might find online. But you can look over the choices and see what you think.
Just because a soap is natural or unscented or even gluten free, doesn't mean it will not contain coconut oil or palm oil or something else you are allergic to. You have to be a real detective and ask, ask, ask.
I have concluded after much reading that a person's sensitivity to gluten could be directly related to the strength of his or her individual immune system. And strong immune systems are usually considered the ultimate goal for good health. So one would always hope they didn't have a weak one.
I have been told that people who seem to have few or no symptoms related to their gluten sensitivity, are left with a handicap. The fact that they don't actually feel anything, doesn't necessarily mean it isn't doing anything. While decidedly unpleasant, those people who get nearly instant diarrhea or some other tangible symptom immediately after eating something with gluten in it have a huge advantage over those who don't.
I'm just not sure that there is such a thing as a "not very sensitive celiac". I think we just don't quite understand the full story about how this all works yet. Until we do, I would always live on the cautious side. I don't think it's ever OK for a celiac to eat gluten, even if they feel nothing.
This is only my own opinion. Does anyone honestly shower with their mouth tightly shut? Don't most of you eventually know what your shampoo or face soap or lipstick or makeup or lotion "tastes" like whether you intend to get any in your mouth or not? It seems to me that it would always be risky to use any cosmetics that contain something that causes so much havoc in your system if ingested even in small ppm amounts, especially when there are hundreds of alternatives to choose from and you don't really have to use the ones with gluten in them. Just seems unnecessarily risky to me.
I recommend you get a good 'from scratch soapmaking book' from your local library. It is totally possible to hand make a small batch of natural bar soaps for yourself in your own kitchen from 3 simple ingredients: distilled water, pure sodium hydroxide (lye) and extra virgin olive oil. You could go to a health food store and easily buy such bars, but you will have a VERY hard time finding any soaps made in dedicated factories AND not containing coconut oil in some form. The reason is that coconut oil is what gives all soap its suds. So your nice little homemade bar of pure olive oil soap may not suds very well. But if made correctly, it will be very safe and pure, pleasant to use, versatile and still clean even without the suds. You can use other oils too, but I believe olive to be the least likely to cause an allergic reaction, if you can't have coconut. Check out more than one book and educate yourself on the technology of it all before you start.
To do dishes or laundry, you would shred off some soap from your handmade bar with a cheese grater and dissolve it in very hot distilled or softened water. Add it to your dishwater or washer and you are all set. I will say that you will probably find it necessary to use naturally soft or softened (water softener) water to most effectively use this type of soap. Other than that, it really has no other negatives and lots of positives. Detergents that we now use so profusely were only invented in the 40's. They are great for use in hard water, but cause a lot of people dry skin and allergy problems as a side effect. Prior to that, handmade soap like I've described was all there was for centuries. They used collected rainwater for clothes, dishes and bodies because it was naturally soft.
If you absolutely are not the crafty type and don't want to do it, then try using Kiss My Face UNSCENTED 100% olive oil bar soap. I can't guarantee that it won't have CC issues. But I'm pretty sure they make a bar that is just olive oil, sodium hydroxide and water. Nearly every other brand will include some coconut or palm (same plant family) because of the suds issue. And by the way, coconut is not a minor ingredient in commercial soap, shampoo or detergent products. It's frequently the MAIN ingredient whether the label looks like it or not. So if you are very sensitive to coconut, it's no wonder you are having trouble.
Here is how it was explained to me by very knowledgeable people.
When a person bakes with flour, there is a lot of "poofing" of flour into the air. It's inevitable and nearly impossible to avoid. And because most flour is so fine and lightweight, it can supposedly stay airborne for quite some time. During a normal baking event and depending upon how careful or careless the person baking happens to be, a lot of flour dust particles can end up in the air and not even be particularly noticeable, unless the sun or light happens to shine through it.
If you walk through those dust particles while breathing, some of if gets into your nasal passages where it is automatically caught by the mucous in there. Then by the natural progression of things, you will eventually swallow it. Technically, you just ate gluten. Now grant you, it's a very small amount. And maybe once wouldn't be enough to trigger anything. It depends upon how sensitive you are. But obviously, if you work in it all day long, it's just logical that it would eventually gluten you, in my opinion.
But let's say you honestly don't breathe any of it in. Let's say you wear a little white mask all day long. That's not very practical, but let's say you do it. All that flour dust that was once floating in the air, eventually ends up falling and landing on every possible surface in the place. If you happen to swipe your hand across a surface with wheat dust on it and then absentmindedly put your fingers back into your mouth, you've just been glutened again.
I don't personally think there's any way for a genuinely gluten intolerant individual to survive working in a bakery or anywhere else where gluten products are regularly being manufactured from scratch, unless they are masked at all times and super careful to never put their fingers into their mouths. Just seems like a bad idea to me.
The same principle applies in your own home. That's probably why so many people on here have eventually concluded that it's very difficult to get well in a house that still contains and bakes with gluten.
I think you can probably survive working around gluten products that are already made and don't produce a dusty residue. Then it just becomes a crumb problem that you can more easily see and avoid. But trying to steer clear of nearly invisible flour dust particles in the air is just too hard.
Some folks can live the reasonable gluten free lifestyle you have just described and do just fine. But if you are still having all these suspicious and uncomfortable symptoms, it would indicate to me that you might be a little too sensitive to be quite that free. Many of us can't eat out at all, which is certainly disappointing. You may not be that bad, but you probably should cut way back on eating out and see if your symptoms change. It's coming from somewhere, maybe even several places and you will have to use the process of elimination until you find it. Be diligent. You'll figure it out.
And yes, you have been getting progressively damaged by gluten much longer than just since your diagnosis, I suspect. Maybe years. Your body might have been silently tolerating it until it just couldn't take it any longer. A positive blood test, if accurate, means quite a bit of damage has likely occurred to the villi in your small intestine and that took time to achieve.
And yes, even a simple glutening can lay people up for a week or two or three. Everyone is different on that. But actually there is no such thing as a minor glutening really. Once that powerful human immune system trigger is flipped by gluten, the reaction is pretty much the same over and over again. It's always destructive and should always be avoided as much as humanly possible.
Perhaps there are some naturally occuring msg issues in pure nutritional yeast that I haven't heard about. But from my studies and experience with health food stores, nutritional yeast has been used as a nutritional supplement for decades. The use of it to make foods taste good is a secondary use, to the best of my knowledge. The recipes I have are for fake cheese and cheeselike sauces. Nutritional yeast helps produce a "cheesy" taste. That's really my main reason for wanting to use it. If what you say is true, then it would certainly not be good. But I hadn't heard that.