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
Sorry I took a while to respond to your question Brandiwine. Yes that is the product I tried initially.
Just a little update on pelargonium sidoides: I was away on vacation for the past week, at one of those all inclusive resorts in the Caribbean. I was fairly terrified to eat the food at the buffet but I did, with a lot of caution. I also took 6 capsules a day (which might have been overkill) of this product: California Xtracts, Elderberry +, 90 Veggie Caps, which I found on iherb.com. This contains pelargonium sidoides, as well as some other stuff. Anyway, I had very very very minimal glutening symptoms while on vacation. I didn't look pregnant lying there in the sun in my swimming suit, and I did not feel at all gross. It was fairly miraculous.
I wish somebody would research the use of pelargonium sidoides (aka umckaloabo) for help with the symptoms of gluten exposure for those with Celiac disease. But I suppose since it is non-patentable, there's no money in it for the big pharmaceutical companies.
Dosage within the recommended limits appears fairly safe from what I have read. http://examine.com/supplements/Pelargonium+sidoides/
In my opinion, it's worth a try for anybody with celiac disease who suffers a lot from accidental glutenings.
Every time I get glutened I google the heck out of the internet, trying to figure out how and why does this toxic process work and is there some kind of herb or anything that will help.
So, this last time I got glutened, I stumbled on something that was actually helpful.
Pelargonium sidoides, also known as umckaloabo. A herbal remedy you can buy for cough and cold. This herb blocks the production of interleukin 15 which is associated with celiac disease. Here is the article I read that led me on this path of discovery. (sorry I know I sound very dramatic. I'm just so dang psyched!)
Okay, so I spent all day Friday running around town trying to find the stuff, because I was desperate. I cannot handle the symptoms of a glutening... the nausea, bloating, and pure anger at the world. I found Umcka by Nature's way. I took some. Nothing much happened at first, but by the next morning, I felt normal. The week after getting glutened, I always bloat up like I'm 5 months pregnant for a solid 6.5 days. Right now it's Tuesday and usually by this point I would be feeling the pits, hating my stomach, sleeping badly, desperately waiting for a week to be up so that I could get back to normal. But, I am normal. My stomach feels fab. I'm giddy with the potentiality of this herb. Could I maybe eat at a restaurant now and then without all the usual anxiety? That would be a freakin miracle.
I can't find anybody else on the internet talking about taking this stuff for a celiac flare. I took the recommended dose on the package, fyi.
I'm super sensitive to gluten and as such, get glutened way too often and spend a lot of time trying to find ways to lessen the impact. A couple of things have actually worked for me, which might work for some of you other super sensitive people.
First, I happened to read something interesting about glucosamine, that it binds to gliadin thus reducing the impact of gliadin in your guts. So I have tried taking glucosamine after having been glutened, and another time tried not taking it, and taking it most definitely reduces (although does not totally eliminate) symptoms. I take it three times a day when I've been glutened. I actually think this is a very useful supplement for people with Celiac Disease even when they have not been glutened.
Second, my variation of sensitivity means that when I get some microscopic bit of gluten, I get totally constipated, bloated and nauseous for almost a week. So it's important to keep things moving. I've taken magnesium oxide for it's laxative effect, which helps. And recently I tried a sea salt flush which made me feel back to normal literally within hours! A sea salt flush is gross and drastic but certainly washes everything out of your intestines in a hurry. If you do decide to try it, first read up on it extensively, and don't leave home til it's done!
Wow reading your post was a heckuva lot like reading about myself.
Is 6 weeks long enough for a gluten challenge? Maybe, maybe not.
I got the blood test for celiac disease at 6 weeks. It came back negative. I ate gluteny foods 6 more weeks although less enthusiastically as I was pretty sick of feeling sick. Then another blood test (this time 3 months in total). Again negative. I have read that three months ought to do it. I have also read that for some people with celiac disease it is not enough time or damage incurred to bring back the antibodies into your bloodstream. I have read that it can sometimes take years after being gluten-free to get a positive blood test. And the basic minimum is about 6 weeks.
I have basically been gluten free for the last 3 months but it took me a while to realize that when I am absolutely totally gluten free, I feel great! It only takes a crumb to ruin my stomach. Life is much better now and so much more difficult too.
If your tests all comes back negative don't think "well great I can eat wheat". All it means is you don't have total villous atrophy. Perhaps you have some villi damage. Perhaps none. Perhaps you have an allergy to wheat, or maybe you do have an immune system reaction, but it is a non-celiac variety. Doctors pretty much focus on those villi as if it's the only issue with gluten.
You know how good or bad you feel eating wheat/gluten. One thing you could try, if all the tests show nothing, is eat for a couple of weeks as if you actually have celiac, right down to avoiding toasters and other cross-contamination. I strongly believe that there are non-celiac gluten sensitive people out there who react just as badly to gluten as the celiacs do.
(Well sorry to revisit this but I had to put in my two cents worth).
I agree! If gluten-free is abuse, then what do you call it when you let your children eat junk food? Geez. What do you call real abuse? These words are chucked around too freely.
There seems strong evidence that both celiac disease and NCGS can be equally devastating to the body. Villi damage is not the be all and end all. I apparently do not have celiac disease but it takes about one crumb to make me ill for days. I run my life as if I have celiac because otherwise I spend my life sick. Incidentally I also have Hashimoto's, which was diagnosed 5 years before the gluten problem became obvious.
SO no, it's not just people with official gold standard celiac diagnosis who need to avoid gluten. And a parent can know what's best for their child, which may be a gluten-free diet without the celiac diagnosis.
Spruster seems to have disappeared from this forum entirely.
I haven't taken it for IBS, but I was on amitriptyline for 6 months -- 25 mg -- to treat a chronic permanent headache that showed up after a bad virus. It sort of helped the headache. Mostly it made me sleep soo so well. That part was great. However the mornings were pretty bad. Mornings would have been okay if I didn't have to speak to anybody, but my 2 kids and husband expected something more from me than total zombie. I was fine by one in the afternoon with the help of much coffee. So after 6 months I went off the meds and THAT was a bad month as my brain re-adjusted. Sleep was very difficult. I was crabby beyond belief.
It was during the amitriptyline phase that I realized most of my headache problems were food-related. Specifically wheat or gluten. Wheat is one of the big causes of headache for me. I also get gut ache, nausea, asthma...
The annoying thing about doctors is that they like to treat your symptoms but not search out the actual cause of the problem. In fairness to the doctors, I suppose they just don't have the time. I mean, you get what, like 5 minutes in the doctor's office. Hardly long enough to assess anything fully or accurately.
I went gluten-free (mostly) last August 2008, because I started to realize that bread, pasta, etc was making me feel crummy.
At a checkup last month, I mentioned this to my doctor, and she suggested I get a blood test for Celiac. But she said I'd have to eat gluten for 6 weeks first.
Okay, I thought, I'll do it. Ugh... the first few days were miserable. I felt ten times worse than I ever had before. It's been a rough four weeks. My headache is nearly permanent and I feel nauseous and my guts hurt all the time. But lately I've noticed something strange. I feel temporarily better AFTER eating some kind of gluteny meal. I might feel better for a few hours even. Well, not good, but better.
Does anybody have any theories as to what this is all about? Maybe in a couple more weeks I'll be fine with gluten again? (wishful thinking..)
It could be unrelated to gluten. The more you wash your hair and the more you strip the natural sebum from your scalp, the harder your scalp works to replace those natural oils. Sort of a vicious cycle. And of course the less you wash your hair, the less often you need to.
But who knows... It could be related to gluten. Gluten intolerance and celiac disease can affect every system of the body.
If at some point you think you might want a definitive yes or no to celiac disease, you really ought to get a second blood test done NOW before you are 100% gluten free for much longer. Otherwise if you decide later, when you've been gluten-free for months or years, the only option to get a diagnosis is to do the gluten challenge. The gluten challenge is no fun at all... I know because I'm doing it right now. After being gluten-free for any length of time, it's common to feel even more ill than you did in the first place, when you reintroduce wheat or gluten.
So, seriously consider going for the blood work now, otherwise an official diagnosis becomes difficult or impossible later. There are lots of good arguments why you might want an official diagnosis.
There are false negatives. Even though you had the one blood test for celiac, it might be a good idea to go for a second just to confirm it.