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
I've posted a couple of times before. Briefly, symptoms started in November. Went gluten-free a week later and wasn't prepared to eat gluten until I could have an endoscopy, which in Australia, in the public system, can take up to 2 years.
My problems were alleviated with a gluten-free diet, but I also discovered I can't eat any dairy, not even hard cheese, or yoghurt that seemed so soothing in the beginning of gluten-free.
I finally got the genetic testing and of the three results, all were positive. I also have Type 1 diabetes, so celiac often goes hand-in-hand. Pretty much a no brainer about what I have, but no 'official' diagnosis. I may pursue it in the future, if I want to damage my gut again, just for a diagnosis. Both my family doctor and my endocrinologist say it's obvious what it is and to stay gluten free.
Now I'm wondering about soy. Seems I can tolerate some soy... but maybe not. I'm aware that soy and corn can be a problem.
It seems I can't eat my usual mayo that is made with soya bean oil. I'm not exactly sure if it's the eggs or the oil. I can eat eggs where the yellow isn't very cooked, but not hard-boiled eggs. In the mayo, surely the eggs are raw? I use S&W Mayo made in the USA. Does anyone know if there's some kind of cooking process to make this mayo?
I mostly have mayo with canned tuna (packed in springwater). Surely it couldn't be the tuna, could it?
I can eat a couple of soy-based crackers ok, but I've wondered when I've eaten more, if they were responsible for ensuing gastro problems.
Yesterday afternoon, I tried a soy latte (I'm missing my decaf lattes). I was ok all yesterday (and almost jumped for joy because it was tolerable to drink), but 24 hours later, I'm having gastro symptoms. I know these will last 24-48 hours, so I'm stuck with it.
I'd gone 16 days straight (without being glutened or dairy'd) feeling fantastic with zero gastro issues! I'm only a couple of months into this, so I'm still coming across stuff I could happily eat before, but not now.
My question is... does anyone know the difference in soy content between a couple of crackers, soya bean oil and about 3/4 glass of soy milk? What's in soy that causes the problem?
Not that I really want to eat soy, but the occasional soy latte would be nice, but not if I can't tolerate it.
With the non-gluten "intolerances", do they do the same kind of gut damage that gluten does? If not, what kind of damage do they do, if any?
Last question... why does a dairy intolerance rear its head when you first go gluten-free, when dairy was never a problem before? I'd have dairy every day before, but definitely not gluten every day.
Sorry about all the questions in one post. I've been saving them up!
Far as I know, wheat in Australia is not yet a GMO crop, although there are now some GM wheat experimental crops here. The article that I read recently claims that Australia would be the first place to grow GM wheat in the world, if these experimental crops went to commercial production. That implies that the USA does not have commercial production of GM wheat. No idea if that's true.
The article can be found here: http://safefoodfoundation.org/wordpress/?p=946
Matzoh for the Seder must be made from one of five gluten-containing grains, not necessarily only wheat. According to sources, for example from an article here:
According to the Orthodox Union, an authority on, certifying kosher food: “Regretfully, because one can only perform the mitzvah [definition: a required good deed] of eating matzot at the Seder with a matzo that is made from one of the five varieties of grain (barley, wheat, rye, oats, and spelt), eating matzot using any of the other flours that are gluten-free would still not enable one to fulfill the mitzvah.” Gluten is found in wheat, rye, and barley.
We are only required to eat Matzoh during the Passover Seder - usually first night and second night of the 8 day festival. Having said that, the explanation offered above is mostly for orthodox Jewish people. With so many different levels of observance, many of the not-so-orthodox (and they certainly outnumber the orthodox) might say that gluten-free Matzoh is acceptable, even if it goes against what is written and the interpretations the Rabbis have made over the years.
I initially posted here, and thanks for the help. It's now just over a week later and the random ingestion of Vegemite (that has gluten) has been replaced with a gluten-free alternative.
I am happy to report, not a single symptom since... well not like it was. It seems to me that my GI system is healing and every day I'm feeling so much better.
Unfortunately, I didn't really want to be Celiac or gluten intolerant, but it is what it is, and so far I'm coping.
It's a bit sad that it came on so strong, so suddenly, after quite a few years of niggly little problems. Maybe I've caught it early, or maybe it raised its ugly head in protest because I was eating more grain-carb than usual.
In some respects, unless I can get some genetic testing, I will probably never know if I am Celiac or just have an intolerance. I'm definitely not prepared to go through what I have since the beginning of November by eating gluten again for an extended period, just so a doctor can do a test or an endoscopy. It was a really awful time.
With all my other autoimmune stuff, I'd be prepared to bet it's Celiac rather than intolerance. Let's hope I can get some genetic testing.
Has anyone here done the same - figured out that not eating gluten makes it all better, but you can't get a diagnosis because you're not prepared to eat it again? If so, what do you say you have?
Ah, idiot me! Totally forgot that our beloved Vegemite has gluten! It might well explain those random, thus far unexplained, symptom days. Without a food diary, which I've been meaning to start, I can only guess it has been a contributor in the last two weeks, when I've been thinking I'm totally gluten-free, but having overt symptoms on random days. Duh - big time!
Ok, so now I will see what happens without the Vegemite. And yes a food diary is a must!
One more question about how suddenly all this came on 5 weeks ago. From what I'd call nothing to thinking I had an awful bug from one day to the next. Is that possible?
I understand what you're saying, but in the public system here, I can wait many months for an endoscopy. Plus in my normal diet, I'm not such a big grain eater anyway because of the carbs. Putting my body under stress if it is gluten, and dealing with more insulin because of the carbs, isn't something I'd want to do for any length of time.
What's odd is that this (cramps and nausea) came on suddenly about 5 weeks ago, although I've had milder symptoms for years, which easily could be attributed to other things as well as gluten. But if I've had this for ages, then a normal B12 doesn't fit, does it?
I guess it's a mixed bag - I don't really know what I've got. It seems I'm quite a bit better without gluten, yet have had the odd day where I haven't been better on gluten-free and I'll have what I call an 'attack'. I think the trick will be to rule out the easy stuff, which my family doctor can take care of, and then wait for the gasto appointment, armed with test results, and see what kind of tests he can run - eg gene testing etc. I just have to get one idiot doctor (had plenty of those) and I'll be back where I started.
I seem to have a knack for being misdiagnosed over the years. I don't want this to be another one. At this stage, the possibilities of what I may have are many. Other than some strange virus, gluten seemed the obvious first choice.
I'm going to keep being gluten-free for now, taking our more dairy and maybe corn, to see if that helps, and see what develops along the way with the medical stuff.
Appreciate everyone's help! This sure is a minefield!
I was definitely tested D3 deficient about a year ago, but then I'm in my 50s and on top of Type 1 diabetes, I have lupus as well, so I don't tend to hang around in the sun much.
It would be nice to have a dx, but the main thing at the moment is to get rid of these awful belly symptoms, and some nausea which is now gone. There are probably lots of symptoms, which, once they're gone, I'll notice I had them. With a number of autoimmune diseases, symptoms tend to overlap. I'm still hoping that this is some kind of bug that will go away. Wishful thinking, I guess!
Pretty much impossible unless I want to be doubled over with cramps.
Whatever I have, is so much better since guten-free, but not entirely gone. I'll go quite a few days and be perfectly fine, then the cramps will be back for around 15-24 hours. Then fine again. I had some corn couscous (gluten-free on the packet) the other night and the next day I had problems. I'm learning that even some gluten-free foods are a problem for some people, so I'm back to eating just chicken, lamb and fresh vegetables. Really fine today and feel great.
I've learned on this forum that I should probably get rid of diary for the moment too, although I don't have lots of it by any stretch. I can tolerate live culture full fat yoghurt (it seems to help), but I haven't gone near milk. Doc prescribed probiotics which I'm taking, plus peppermint oil before meals, which I haven't been taking other than some fresh mint in tea now and then.
I'm in Australia in the height of summer, and have no regular flu symptoms, no temperature etc. My white cell count is perfectly normal. My doc concludes bacterial infection is unlikely, but is sending me for fecal tests anyway, to rule out things like giardia etc, plus a scan to rule out other things eg gall bladder and so on, although I don't have typical gall bladder pain. I also assume if it's some kind of bug, I wouldn't be going 4-5 days without a single problem.
I've had other symptoms for ages, like that truck hit me feeling after bread - and my blood glucose wasn't the problem, which I've proven with rigorous testing. My Type 1 diabetes is under pretty good control with an insulin pump. The odd thing is that I haven't had these belly problems before. Maybe they've come on because I was eating more gluten than usual in the months leading up to this,
It's a process I guess, and the more simply I eat at the moment, the better, I assume. I was eating pretty clean food to start with, and have done for years but there was some gluten in my diet, which is now gone. Everything I use to prepare food has either been steam cleaned or put through a hot dishwasher. I'm not eating out at the moment, and not eating at any one else's house, so far. That's all bad enough doing low-carb, but now with gluten-free, and until I figure out what I can and can't eat, and indeed what the problem really is, accepting dinner invitations is dicey at best.
I've just joined. I've been having belly problems for about 4 weeks. I've been gluten free for about 2 weeks now and definitely feel better, but not completely. I'm still having very random attacks of belly cramps, yet I'm eating very simply (all fresh meat and vegetables, occasional eggs, with the odd gluten-free cracker) - definitely gluten free. I have another related disease - Type 1 Diabetes, so Celiac is being considered.
I had a routine anti-gliadin test a couple of years ago, but it was negative. On the other hand, I'm generally low carb and I doubt I'd have been eating enough gluten at the time - maybe a slice of bread once a week or so, maybe a cracker here and there. Not sure it was enough.
While I'm being booked in to a gastroenterologist, getting scans done and so on (all of which is a bit impossible during the holidays), I have some questions:
I had B12 tested a few days ago and it's normal. My question is... how long does it take for B12 to be depleted in untreated Celiac? And how long does it take to replete after going gluten free?
Being gluten-free now, I assume that no regular blood test (other then gene testing, which my family doctor can't order) would show much. Even an endoscopy might not show much after such a short time, from what I understand. What do you think?
I'm not so much interested in a diagnosis right now, this minute (that may come later), as making sure I'm on the right path to fix the problem. If gluten-free fixes it, then I'm ok with that, however, I'm not completely convinced it's gluten. Only time will tell, I guess. Any assistance would be appreciated.