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
thank you. This is what I've been thinking - going grain free, possibly keeping in rice and quinoa for now, and apart from that, meat, poultry, olive oil, veggie but no nightshades, fish. I want to keep eggs in because I love them, but... who knows. Fruit and nuts.
Then I talk about it to the new doc who scoffs and says THERE IS ABSOLUTELY NO SCIENTIFIC EVIDENCE, IT'S A LOAD OF BS.
Well, I want to say but I don't (since it is patently useless) then how come I hear people saying they got better on low carb?
I've just made two years gluten-free as a certified celiac and lactose intolerant, and five months ago after a bad bout of diarrhea I had a bloated and painful tummy. The bloeating eventually went away but the pain persists. Normally concentrated in my upper right quadrant but can also move around to upper right and lower right and lower left; it can be a burning or a twisting or a feeling of trapped gas. It is never intolerable or indeed acute, but it is always there, sometimes more, sometimes less. I sleep ok at night.
Since I'm given to high anxiety, I have taken lots of tests (colonscopy, abdominal ecographies) and everything looks normal apart from some small diverticula and my having a LONG and TWISTED colon. Liver, kidneys, gallbladder etc LOOK ok.
I have gone to a second gastro doctor the other week (the first one says he thinks IBS) and he told me he want me to have an abdominal scan with contrast to rule out possible (but, he says, highly improbable) problems linked to celiac disease (refractary celiac... and possible consequences). These guys are both experts in celiac disease here in Rome, and the second one also says probably IBS.
(my BM are sort of irregular, rarely D, but very often spastic and pale)
Well, I AM anxious, but I also have read a lot of your testimonies. Apparently it is sort of normal to develop other food sensitivities on a stressed out gut. I have tried not eating several things but I've never made a "scientific" effort about it. I want to start as of today. Now this second doctor claims that nutritionists are "useless" and that gluten sensitivity does not even exist and that all celiac can get back to eat lactose products once healed and that healing doesn't take more than two years and blah and blah.
Question: anyone can relate? did you develop OTHER intolerances after going gluten-free, and did they manifest themselves with irregular BM and pain?
Hi there. I've been here as Alesusy but cannot find my account... I am now 2 years into gluten free and in the last six months my GI distress (never totally disappeared) has deepened to constant colon pain - never huge but always there. A virtual colonscopy showed diverticulis but apparently they are not inflamed. Question: anybody got definitely better on Paleo diet? Anybody kept having colon pains while gluten free? Thanks
Andirubes, it still happens to me.. after 18 months gluten-free. To be fair, I have actually been glutened, I think, but it was on my FIRST day of holiday (and then I got glutened again as soon as I got back to Rome having steak and roast potatoes in a restaurant I've been to before. How do I know? well--- the explosive consequences coming in one hour later are proof enough to me).
However, you have been just one month gluten-free. One month! You need at least six months for your guts not to react to any kind of irritation. Think of this: if you had a skin burn from an acid and you stopped slowly pouring acid over it, you'd get better. But anything apart from soothing creams would NOT be appreciated by your burnt skin while it heals. How long? Well. You are young, you should get better sooner than me! But do not get scared if you get sick apparently with no reason. it is, unfortunately, completely normal. But it DOES get better, believe me. It's a lifetime care and you cannot slip but it does get better
Unfortunately not much. I'm writing to say that it happens to me as well; very stiff neck/shoulders together with intestinal distress, particularly on the left side, with awful jaw stiffness and tension headaches around my teeth and my lfet eye (right side achey too but not the same way). I've had massages, physioterapy aimed at the jaw, and both help. best things are muscle relaxing drugs. Unfortunately it is not stuff you can use for a long time. I took some Flexiban (italian commercial name) which in structure is similar to an anti depressive drug, and it works on the central nervous system. I was told to take it 5 night on, 5 off, then again 5 on and then STOP. It did help during a difficult period.
Otherwise: yoga, massages, sleep. Working with a stiff neck is not nice but being on holiday for a week with a constant tension headache for 4 days because (if I am right) a restaurant glutened me (ever so slightly...) is no fun party either.
Well, this is VERY interesting.
Since going gluten free, my periods have become irregulars - either 20 days, or 35/38 -. Since I was 47 when DX, and 49 now, I thought "perimenopause" and tried to live with it.
Now I think there are all sort of links between hormones and gluten. There is at least one study about celiac disease and hormones which I heard of - should look it up - Of course we are not presenting a coherent, scientifical body of evidence, but it is strinking all the same.
I really wouldn't know how to explain it, however, apart from thinking that hormones cope with gluten and celiac and when you take away gluten, they have to re-calculate everything...?? There must be a trigger.
Hi there everybody.
I want to thank Sandsurfgirl...
I am Italian too and I am gluten-free since December 2012. it's been a long road and I am still sick - not all the time, but often enough to bring me to my knees, or rather to have a feeling of malaise, even if my antibodies have long been in the normal range. My gut is very delicate (I was a 3B marsh, dx at 47, after years of suffering). Just now I am struggling with lingering symptoms from a restaurant meal where gluten found a way into a steak and roast potatoes (don't exactly know how). It's been ten days and while, thankfully for me, I can function when glutened after the first bout of D, I am still fighting gut pain, tiredness, brain fog etc.
Actually I came here today to ask whether TEN DAYS of lingering symptoms is normal!
The good thing is that when I am well, I have energy as I didn't remember having in... decades.
A word about beauty stuff etc. Of course you do not absorb gluten through your skin. But personally I tend to be wary. Cream goes on hands, hands get washed imperfectly, fingers find their way into my mouth. Hair spray in on my hair, hair spray is on my pillow, my mouth is on the pillow. Actually, CAT FOOD is theoretically a problem too - or maybe not theoretically. I have two (cats), old and ailing and cranky about food. Food with unspecified "cereals" goes into dish and splashes on my fingers. Ok, so i wash very well my hand after feeding them. But cat eats food, cat licks himself clean, cat walks all over the kitchen looking for more food (yes, try to teach a cat NOT to walk over kitchen counters) or sleeps on couch or sleeps on bed... Is it implausible that some of those 'cereals' find their way into my gut? I don't think so.
Bottom line is, it takes TIME. More than I supposed when I started. I though in six months I'd be OK. Now I know that six months is just the time you need to placate your antibodies (more or less, everyone is different, of course). Then your villis have to grow up again. And your gut reacts from anything which might be of difficult digestion for 'normal' people.
hi there! I'm getting tested for vitamin D but I don't know about B12. I will ask this doctor I'm going to see to prescribe me a full panel. My GP - the public health system one - is nice but I think he can't stand to see me around any more.
I did keep a food journal for quite a while. I know my staples are rice, chicken and apples - and some vegetables (salad, carrots, fennel, green beans, leaf vegetables, artichokes are all right). Also red meat in moderation and eggs seem to be all right. Almonds and generally nuts, although I'd have to test them accurately to see if the mount up to problems, but they do not provoke major reactions. In restaurants when I'm good, I keep to steak and roast potatoes or simply steak (no sauces). It can be contaminated by pans anyway, I know.
It is not frequent to find soy in processed food here in Italy. I'm lactose intolerant anyway (actually that seems to be getting better, but it means I can have small quantities of de-lactosed products) so I skip milk and cheeses. I never liked eggplants anyway:-) What I need is a nutritionist, I guess, but I could not find a reliable one until now - I mean one who KNOWS about celiac...
What I really find difficult - but I know you people know that, but if feels good to rant about it - is to explain people how MUCH sick one can get. They don't get it. I've got lots of nice friends who've been cooking for me and taking me very seriously but they still don't quite get it. And I've got dear friends who tell me things like "YOU choose the restaurant cos YOU'RE the complicated one, ah ah!". I bite back my answers, because they simpy don't get it. I've tried explaining that if I have gluten, I risk to feel like I've been poisoned for days and days, or like I've got a bad hangover - you choose the analogy - but they don't really get it...
Hi guys! I've been absent lately because... I felt much better all in all. I measure my health by the number of medical searches I do on Google and by the number of specialistic visits I book.
The question is: do your symptoms after a glutening vary?
I am not certain that I have been glutened. I was dx in December 2012 and all last year until August I've been feeling better and worse on and off, with periods of great distress and periods of feeling better. In fact, so oscillating my symptoms have been (including ocular migraines and worsening sight, dry eyes etc, yes I know about Sjogren) that I have thought I may have hormonal problems linked to perimenopause and I have actually booked a visit with a gyno/endocrinologist for next Friday.
But all in all, from August till December I have been feeling better. Over Christmas I was in Turkey and almost always slightly sick. And in the last couple of months I've been feeling increasingly worse- again day on, day off... and culminating this last three weeks with a bout of 24 hours D (I thought it was flu) and since last Monday with weird neurological symptoms I never had before: numbness on my left side and cold feelings irradiating from arm and leg (but no loss of sensibility thank God) and HORRIBLE anxiety close to panic attacks, convincing myself I 'm on the verge of dying, etc. You know the drill. I really freaked out. And for this last week my digestion hasn't been good either.
All this MIGHT be hormonal - we'll see - and it MIGHT be something else. Hormones, especially as related to my eyesight, are still worth investigating, but I'm thinking that I've been getting careless and eating outside very often, like four times a week or more, and often banking on the kitchen of wherever I am (friends or restaurant) being careful. Fact is, CC is always a possibility and I may have added SEVERAL instances of CC over time. But if this is the case, I do NOT follow always the same pattern after glutenings. Usually D is the first symptom, but anxiety and weird neuropathies two or three weeks after a D bout is a first for me, I think...
However: plan is, eating as carefully as possible for the next month. I still WILL have to eat out several times for work, or because I will be far from home, but... I'll try being extra extra careful.
Any consideration is welcome!
(I think anxiety is the most debiliting thing I ever felt, whether it's hormonal or celiac-linked)
so I'm on holiday and doing, I think, fairly well and being pretty careful after 9 months gluten-free and thinking that actually I do not know how strong a reaction can I get from gluten and maybe I'm one of the lucky who don't get any reactions at all. Then I go out for dinner (normally I eat at home or in carefully selected places) in a very popular place which clearly doesn't have a clue, so I order roast fish to be on the safe side.
And then my friend order pasta with arselle (mussels) but she does not eat her mussels because she likes the taste but not the texture. And, even if it seems incredible to me NOW, I think it is actually OK to eat the dozen or so mussels that have been in the pan with the hot spaghetti and I do not realize they are coated with gluteny oil. So I have them, and 45 minutes later my gut literally explodes - luckily I was back home by then.
The good news: a couple of imodium seem to have taken care of the gut part after I voided everything I had. No throwing up either. And yes, today I'm woozy, very tired and foggy brained, but it could be a lot worse. A LOT. The bad news: I'm INCREDIBLY stupid. Ok, it all goes to experience, but...
I know everybody's reaction is different, but can anyway tell me if their main reaction is a bout of D followed by a bad hangover feeling? Because I'm 99% sure this was a glutening, but I can't exclude that the mussels weren't quite fresh or something. thank you...
I don't know about the huge clots, I'm afraid.
DilettanteSteph thanks for the input about aurea migraines. I suffered from migraines as a teen and around my 20s but then they tapered off. This aura thing is totally new and came on AFTER I was off gluten. My gastro doctor declared they have nothing to do with each other. Maybe after going off gluten I've become much more sensitive and exposure triggered auras (but they tend to come every 7/10 days) For me, court is still open: hormones? celiac? hormones go crazy if ccd because of gluten? The only good thing is that I am not taking any drugs - apart from probiotics and homoepatic remedies. I have to say that this last month I've been OK - apart from a certain degree of leg itching - and that I ve not had an aura migraine in the last 20 days. But my last period came regularly at the right moment.
What I believe - but I have no proofs, and no doctor seems really interested - is that the two things are related: my hormones are playing up because of celiac. I may never know.
I can honestly say however that in the last seven months since going gluten-free I made progresses. Things are not perfect but in terms of energy, gastro problems, outlook on life generally I am much better. Then I get whacky weeks - and if I was ccd, I don't know when or how.
I am blessed with several friends who took the time to learn what I can eat and cook it special. Also, I'm not the only one. I have invited people over for dinner quite successfully too. Frankly things are much easier when you start feeling better, which in my case happened about 7 months after gluten-free, and I can tell you, I'm not HEALED yet, but things have improved immensely. What it boils down to is:
- not center your social life on food. Going to gatherings and bringing your own food or eating before
- when people are cooking for you either discuss the menu before or go prepared to skip the meal or to eat only half of the menu
- in restaurants, strict choice of roast meat and potatoes or fish and potatoes, OR gluten free pasta. It is much easier here in Italy, because most restaurants do know what they are dealing with: however it DOES entail always talking to the maitre. It's becoming second nature...
- shopping for gluten free products and automatically eliminating suspicious foods. It does become second nature, this too.
I'm going next week on holidays in Sardinia at a friend's house. I'm going to bring along some of my stuff. I'm conscious of the fact that it means everybody will keep worrying about how to feed me, but the only way I found to deal with the situation is shopping myself for my stuff and either proposing to cook for everybody or at the very least cook my own stuff making sure I'm using clean pans clean spoons etc. If you do it naturally enough, people will follow suit.
I HAVE been told by several people that I talked only about my bowels and/or that I talked only about my own problems. People just do not realize what it means feeling sick. You are not in the hospital and look more or less norale, so they really have a hard time believing how sick you feel. Luckily, when you start feeling better you also start getting more of an interest in life and can curb your impulse to expound about your own health
Having said all this, friends who will not take the time and effort to understand are not much as friends. I think we can all use the occasion to clean our mailing lists and Facebook friends' list. Family we cannot clean up, but on the other hand yelling at family is OK.
You are the first person to tell me about an aurea migraine with no pain from gluten trace exposure. Are we taking about the same thing? Colored haloes all around object, fragmented vision lasting for about 20-40 minutes?