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 had no idea my hernia would require watching my diet or that it had anything to do with reflux. Its not massive at the moment but you can see and feel it, its pretty obvious - sticks out above my naval. Do you know of a website I can have a look at? Your poor daughters haven't had much luck, have they?
The GI didn't actually tell me too much at all. Wouldn't do any tests for Celiac either - which I didn't argue with because I've been gluten free for over a year and it would have been pointless. I was worried though when he kept mentioning wheat intolerance. I insisted it was gluten because I'm even worse with rye than I am with wheat. He asked me if there was gluten in rye!!!!! Anyway I have done enough gluten challenges to know without a doubt I am gluten intolerant.
The tablets I am on are helping but not completely. I am very uncomfortable in the mornings when I wake up and then after supper at night. The food doesn't seem to move down.
Thanks so much for the advice Monica and Chrissy - much appreciated.
I worry about having surgery that is perhaps not really necessary - I feel it can cause other complications. I have never actually had any surgery and am not keen to start!
The GI thinks my ulcers should have cleared in the 6 weeks I've been on the medication but my reflux has got really bad, especially first thing in the morning and late at night.
Cassidy your comments about it being gluten related are interesting because I've been trying gluten again over the last 2 weeks and its during that time the reflux has got worse, also bloated again and sore arms. Oh and not sleeping at all!
Hmmmm ........ need to take my time and really think about this. Haven't got time right now to go into hospital anyway
Saw my GI today for a follow up after my gastroscopy and colonoscopy.
Been on Pantoloc for 6 weeks for my ulcers but now he wants me to have the op for GERD - laparoscopic and also to remove a hernia at the same time.
Has anyone had this op? Did it help at all?
My gastric symptoms have cleared up dramatically since I went on the Pantoloc. So much so that I though I would try eating gluten again. HAH! No such luck. GI told me to give up and just accept that I am gluten intolerant. There was no villi damage to suggest celiac disease but then I've been gluten free for over a year. My arms are killing me from eating a bit of gluten!
Not sure whether to have this op or not so any advice would be welcome!
I understand EXACTLY how you feel. I am in the same position at the moment.
Had a gastroscopy and colonoscopy 2 weeks ago. GI told me not to go back on gluten for it. I have been gluten-free for a year. Had blood tests after 6 weeks gluten-free - they were understandably negative.
The gastroscopy showed major inflammation and LOTS of ulcers and absolutely no evidence of Celiac Disease - also not really surprising after being gluten-free for a year. So according to the GI I have a gluten intolerance which may or may not clear up with the ulcer meds. He has given me acid-blocker medication which he says I may have to be on indefinitely. He believes the ulcers and inflammation have been causing most of my symptoms and food sensitivities. I must admit after 2 weeks on the medication my bloating and stomach problems have calmed down a whole lot.
So do I try and eat gluten again after a while? Or do I just accept a diagnosis of gluten intolerance and stay off it anyway? I don't know what to do.
Lisa, I bought a Clinique lipstick a couple of weeks ago. The salesperson read the ingredients for me and told me it was wheat free (I have bad eyesight). Anyway, when I got home I had my kids double check and guess what - YES it contains wheat.
So I had to take it back - not impressed let me tell you. I bought an Elizabeth Arden one instead.
I saw the GI yesterday. After telling him my history, he told me the first thing that is wrong with me is that I am depressed. I was gobsmacked - that was the absolute last thing I expected to hear.
Monica, he told me that most of my problems are from constipation. He reckons that if I can evacuate my bowel properly on a regular basis most of my symptoms including food sensitivities will clear up. He says my system is toxic from having been constipated for so many years. He doesn't think there is anything wrong with my bowel rather that it is just "lazy".
I am having a colonoscopy and a gastroscopy next Wedesday.
As far as the Coeliac goes, he says it is very unlikely they will pick anything up as I have been gluten-free for too long. He thinks it is unlikely that I have it as the only "true cases" are people from mediterean descent. Honestly!!!! However, he says I obviously am gluten sensitive and should just tell people I am wheat intolerant.
I give up and will just stay gluten free without a diagnosis.
Danikali I have briefly looked into the SCD diet and thought it too extreme but I will definitely have another look now!
Thank you so much for taking the time to write me such a long detailed post.
My gut tells me I have Coeliac (excuse the pun)! I have actually thought a lot about just having the gene testing but if it comes back negative I'm back to square one. I am convinced my mother has Coeliac. As I posted before she is 55 years old, 5 ft 4 and weighs 81 pounds, has lupus, loss of hearing, hair & eyesight, sores on her body (DH I think), chronic purple bruising all over. She was constipated till about age 37 which changed to D and has never let up.
I am going to order the book you mention right now. I did buy Dangerous Grains and it answered a lot of my questions but not all.
I just feel that I eat really healthy, don't smoke, hardly touch alcohol, have been gluten-free for a year and I really should be a lot better by now than I am. The other problem is that I LOOK healthy. Meanwhile I feel sick all the time inside, I woke up this morning feeling really nauseous, indigestion, hectic headache, achy body - actually I wake up like this most mornings.
Anyway I will take all your advice about the hydrochloric acid etc. and I will ask the GI to do the gene test.
He will probably think I'm a hypochodriac - they usually do.
Have a great day and thanks again! I will get there!!
Debbie what you say makes perfect sense. Its just so frustrating not knowing what is causing the problems. It would be wonderful if someone would say to you "stay away from gluten, dairy, nightshades etc.". Yes I know - in an ideal world - and there are so many of us in the same boat!
I'll go and see what this GI has to say and then decide whether I am willing to go back on gluten or not. But I will definitely ask for the other tests you mentioned.
Next week I've been gluten-free for a year. Positive changes - not ONE incidence of cold or flu (which was a monthly thing), no more sinus, ear or throat infections, depression/anxiety gone completely.
Negative changes - intolerant to just about everything I put in my mouth still after all this time. Driving me nuts, still very bloated a lot of the time. Sore arms often - right now for instance! Still chronically constipated - major problem for me. Wake up with yellow eyes and face - told I have very elevated liver enzymes. Homeopath said its Gilbert's. Still very tired all the time.
I do not have a "proper" diagnosis. I thought I was ok with that after a year but I'm not. Saw a specialist last year who wanted to do a biopsy. I cancelled because I had just lost my little brother. I was originally diagnosed via the BEST system which is bio-energetic stress testing. I had blood tests but I had already been gluten free for 6 weeks and they came back negative.
I have made an appointment to see a different GI on Tuesday next week. Now I know I will have to do a gluten challenge for blood tests and/or biopsy - if he takes me seriously that is!
I am petrified of eating gluten again. The smallest amount affects me now. Did my own gluten challenge 6 months ago and was as sick as a dog for 10 days.
I honestly think it would be easier for me to stay off gluten forever with a proper medical diagnosis. I also need to know what is causing my other ongoing problems - whether its just leaky gut or whatever.
Do you guys think I should go ahead with the testing?
Ha ha, I meant 1 x dozen and only realised what I typed after I'd already posted. I wondered if someone would comment! No I just have two hungry teenage boys who eat me out of house and home!!
Tara, I haven't had that experience with the "burning" mouth. I know corn can cause all sorts of problems for some people. You really must try and stick to basics right now until you start feeling better. I find bananas are the only fruit I can eat when not well, however, others have problems with them.
I am sorry you are having such a hard time, hope you feel better soon.
Tara, you can whine all you like here, we've all done it! I know what you mean about the beer and feeling like crying. The first few months are the worst, I promise you.
Once you realise how much better you can feel, it will get easier. I've had to go hide in the toilet a couple of times when everyone here at the office were eating burgers and pizza in front of me. The smell nearly made me mad.
I still have bad days but they are few and far between now. I used to be addicted to bread and I can honestly say I don't crave it at all anymore, and I stand and make 2 dozen sandwiches every night for my kids!
Its probably hard for you to believe right now that it will get easier, but it will eventually become second nature to you.