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
Bartfull, your rant is right on the money, totally agree. You call to mind that the days are over where doctors are panoptically lauded as some sort of information gods. Yep, I grew up that way back in the 60's - your medical doctor had all the answers and whatever they said was taken as gospel. Until I saw enough of them in the 21st century who denied simple logic or brushed off my intelligent observations about my own body or what I was experiencing, merely because they had not read the symptom or disease in a medical book that could have been written eons prior. Or worse, because they were afraid to go against the medical establishment. After countless visits to the doctor without answers, I made the gluten connection on my own, and then pursued testing. While in the meantime, doctors were still stuck on the useless "stress, hormones or menopause" schtick some go to when they can't admit they haven't a clue.
But hey, I'm not anti-doctor. I am convinced there are good ones out there, the best of which no longer subscribe to their own hubris as substitute for effective medical detective work that keeps up with the times. Those are the gems. And hypochondria aside, it's up to us to know to keep looking when our gut tells us the doctor may be totally off-base. While I understand that doing your own internet research on health symptoms can yield cholera in the face of only a rapid heart rate, we should get used to the garbage-in/garbage-out method of taking responsibility for our own health and well-being, and get yourself to a humble doctor when you need a similar resource....or to stitch you up when you split your lip.
Another alternative is clarified butter (ghee), which is butter with the milk proteins removed. I am very sensitive and find I can tolerate that just fine and I like the taste even better than regular butter. Excellent for baking too, as my gluten-free/DF/SF choclate torte will attest. Purity Farms is certified casein free ghee and happens to be the one I can get my hands on most easily.
Horsehandsss, I felt dizzy and "off" for years before I stumbled onto the notion that what I was eating could have such a horrendous effect on not only my health, but my attitude, optimism and total feeling of well being. I never had a panic attack before I was 48, but I can vividly recall the intense feeling of dread that came upon me that day. I was luckily at home from work (dizzy and sick, as usual), and suddenly I felt like I was about to die and - nothing- could have convinced me otherwise. After about 15 minutes the initial feeling passed but I was sure I wouldn't leave the house ever again. After that I was dizzy for another 7 years or so before I put it all together, even though I was eating "healthy", no fast food, etc.
I'm a firm believer in food and/or environment as the direct cause for most human disease and bodily disorder. I don't know your level of expertise in pinpointing possible cross contamination or hidden ingredients in food labeling, nor your dedication to such things. I'm not sure from your posts what you are eating on a daily basis, what doctors you may be consulting, or medications you are taking, but anyone can gather from the tone of your emails that you are in angst. I know how it is to be sick and feel hopeless that you'll never figure things out. The good news is that if your health and well being woes are being caused by something you are ingesting, be it food, drink, or otherwise, and you truly have a desire to be well, then the solutions may take a bit of detective work on your part, but the answers are already existing and ready for you to uncover and implement.
I don't think you'll get many tips here when it comes to reintroducing gluten but that's not because people don't care. They do and that decision to start putting gluten into your body again could be a major step backward for you. Before I say anything else I want to clarify that a negative test or biopsy for Celiac Disease does not mean your body is not reacting to gluten. All my tests were negative but doctors agree I am clearly reactive to gluten and soy, and to a lesser extent, dairy, and my symptoms of occasional cross contamination are part intestinal at times, but always neural, as yours seem to be. But I don't believe this because a doctor told me. I know this because of how stellar I feel when I do not ingest these things. Your body is screaming at you, please take a breath and listen to it.
The fact that you're still feeling poorly seems to indicate that there may be another intolerance. Or perhaps you are still being cross contaminating with gluten. Taking gluten out of the diet means all gluten in any trace. Your body wants to return to health, it's natural state. But you've got to give it a proper chance of success. If you have additional questions on how to maneuver the road ahead and trying to pinpoint what is causing your pain and anxiety, this forum is a great place to be. Ask now.
Have you considered that it may not be the lactose (milk sugar) that you are having problems with on the dairy issue, but the casein (milk protein)? I had a similar problem when I first started. I was strictly gluten free so couldn't understand why I felt so poorly - for me mostly neural disorders. I stopped ingesting dairy and then even soy and that's when I had the breakthrough amazing results.
If you're past the withdrawal stage (feeling worse before you feel better) after eliminating gluten, then you may want to consider eliminating dairy altogether for now to see if you feel any better. But I want to mention that typical butter, cheese, cottage cheese, ice cream, yogurt, sour cream, etc., contains casein. The other culprit for me turned out to be soy, which was making me just as sick as gluten and dairy. Read those labels and note that some SmartBalance contains soy. I'm no scientist, but because my symptoms were the same for gluten, dairy and soy ingestion, it would appear that my body was interpreting each of those protein molecules in the same way. From what I understand, it's very common. And if it's not found to be dairy or soy, then there are other food group intolerances that may be causing you continued trouble. But it's liberating to finally wheedle down to what it is so you can feel great everyday of your life.
Also, keep in mind that while you'll never be able to tolerate gluten, many who give up dairy (and soy) find they can reincorporate it into their diet after some months.
Yes, you are absolutely correct! The size of gluten molecules must play a big part in this, but I wonder if the gluten molecules could possibly be carried through by osmosis even if the water molecules could not??? Clearly, I'm no scientist!
But thanks for that link. It got me thinking that perhaps I could do a test with food coloring in the water and hard boil the egg. If no coloring comes through in an uncracked egg, then perhaps nothing else go through? Hmmmm. Like I said, I don't want to eat it. I'm writing a novel and I'm kicking around a possible metaphor.
If someone hard boil eggs in a pan that may contain traces of gluten, e.g., boiled pasta previously, could that cross contamination be absorbed into the inside of the shell to the egg? I would certainly expect cross contamination to be possible on the shell, but I'm wondering if anyone knows whether the egg shell is porous enough to allow the gluten into the uncracked egg itself?
OK, at the risk of sounding nuts, I'll share the following:
I've had that, and the burned tongue feeling eventually turned into a bout of CONSTANT dry mouth feeling that drove me crazy and lasted for months. Everyone kept just insisting it must be Sjogrens but tests were negative and I didn't have any other symptoms. It's under control now and only flares up occasionally but I've definitely seen the correlation between the mouth/tongue discomfort and my stomach, specifically low stomach acid. In fact, sometimes I wonder if that's what's behind the mysterious "syndrome" of Sjogrens, which my doctor says they call anything they just don't understand and therefore can't "cure". I searched for months, and in the end I tried a natural tonic I read about on the internet and within a day or so the symptoms were 95% gone and my "off" stomach issue was totally resolved. I still do it these days but just a few times a week. I'm like you, no gluten/dairy/soy and only whole foods. This tonic fills that bill:
2 TBSP Natural Apple Cider Vinegar (with the mother - like Braggs)
1/4 tsp Baking Soda
8 oz water
raw honey to taste (optional - the ACV/BS combo is actually a bit sweet on it's own - you don't need much honey, if any)
Back then, I would drink this just before eating breakfast, lunch and dinner. I think the tonic is more to help the body achieve a healthy pH. These days I've substituted seltzer for my water in the drink and it's like enjoying a softdrink (without all the known carcinogens of canned fizzy drinks). Worth a try!
If your goal is to be able to go to the banquet and not have to lug your own food, why not call and speak to the chef? Perhaps the best thing to do would be to make a clever suggestion. I do agree with the logic that they should be up to snuff on food intolerance issues, but unless they are, I wouldn't want them to pretend with me as guinea pig. You did an admirable job of explaining to them the possible pitfalls of how they could possibly make you sick. But those pitfalls are second nature to you, not them. You have presented them with a problem but you also know the solution. Clearly, they do not.
As my system has become much more discerning over the past 2+ years of strict adherence to this way of eating, I have found that I cannot tolerate quinoa, among other non gluten/non dairy/non soy foods I used to eat with no problem before. I've come to realize it's just the way I am now. C'est la vie!
I went through a frightening period a number of months ago, this after being strictly gluten/dairy/soy free for 2 years. I was doing fine and one day I started getting the feeling that I couldn't take in a deep enough breath. I underwent many, many tests (most of which happened during the very time I was having the symptom) to make sure there wasn't an underlying cause but all they proved was that I was healthy as a horse. That's not bad news, but I still was having the breathing symptom. Not all day, just in the first part of the day; thinking back, that should have been a clue. One day I ran out of the gluten-free/DF/SF, no nitrate bacon I had been eating for awhile. The symptom subsided. After a week I ate it again and started with the breathing problem again.
You are totally correct, that everyone is different. But for me, the feeling like I couldn't suck in enough air was a simple food intolerance. I removed that item from my diet and the symptom has stayed away since. I usually suspect cross-contamination when I react but my typical immediate symptom is dizziness and that's not what was happening. I haven't tried another bacon brand since, but my best takeaway from that experience is that just because it is gluten-free/DF/SF, it doesn't mean your particular body chemistry will tolerate it without problems. And a food intolerance can absolutely cause that breathing symptom for some.