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
My biopsies and blood test came back negative too. My doctor did see some inflammation in my small intestine and said that it could be a sign of early stage celiacs. He said that it could be due to a few things, but the possibility of at least a gluten sensitivity was quite high.
I've been told to go on a gluten free diet for 6 months and have another endoscopy to see if it's made a difference. Since going gluten free (only 2 weeks) I have noticed a few things start to get better, so even if I'm not technically a celiac, I definitely have some issue with gluten and am happy to stay on this diet. I'm sure it'll take quite some time to resolve all of my issues, but there is definitely small progress.
It might be worth asking your doctor if they found any increase in lymphocytes in the small intestine.
The first doctor only did the tsh which came back normal - pretty much bang in the middle of the range. The interesting thing was that they also provided results for previous tests I'd had on my thyroid over the last couple of years and 2 years ago my tsh was right at the bottom of the range and no one told me. It looks like last year there was another test done which showed it had increased slightly and then the most recent test has it looking very normal as far as that test is concerned.
I've just seen another doctor and asked for a full thyroid profile including every test possible for my thyroid just in case something is being missed - my first doctor refused to do any further testing. I've only had that blood test done yesterday so I'll probably get the results on Tuesday.
I'm secretly hoping that it is a thyroid issue as I need to find an end to these heart problems and other weird symptoms I have.
Thanks again for the replies
ETA: sorry I forgot to mention - I find that if I take calcium tablets twice a day it makes a HUGE difference to the occurrence of these heart palpitations. I went from having something like 40 or 50 a day (that I was aware of anyway) down to maybe one or 2 a month. In the last few weeks though, this seems to be getting worse again (probably 5-10 a day which are increasing in strength) which also coincides with an increase in GI issues - I think I'm having some absorption issues.
It might be worth trying the calcium if you haven't already done so. I'm not sure if it will work for you, but it definitely helps me out alot.
I was only diagnosed a couple of weeks ago and I have to say that I feel much better now that I know what's wrong with me.
I have 2 small children, one is 1yr and the other is 3yrs and I would do anything to make sure that I'm around to be their Mum. Giving up gluten is alot easier for me than coping with an illness when I have little ones to look after.
I see where you're coming from and can understand that being in college would definitely be a challenge. Just keep telling yourself that at least you found out now and that you'll be healthy and able to avoid scary life threatening diseases later in life if you look after yourself. As they say "knowledge is power" and it's better to know what's going on especially with a disease like this that can be managed.
You'll probably find that once you finish college you'll feel alot better about your diet and lifestyle - I'm in a different stage of life to you and I find that it's not that difficult to maintain this lifestyle, it just takes a few changes which aren't that hard for me. You'll probably find the same thing
My doctor has told me that I have increased lymphocytes in my small intestines (I've mentioned this before in a couple of other threads) - which makes sense as I do have some tenderness in my tummy as well as plenty of diarreah.
I have been on a very strict gluten free, lactose free, refined sugar free, soy free and now corn free diet for the last 2 weeks and whilst I have noticed that the diarreah has eased a bit, I still have that tenderness. Also, my lymph nodes in my neck and chest have swelled up which I'm assuming is a response to the infection.
I just wanted to ask if anyone else had a tenderness in their abdomen that was related to being a celiac and if so, how long did it take you before it started to ease up? Do you think it's worth going on antibiotics to help things along a little?
I'm being referred to a immunologist as soon as my doctor has a complete set of tests, so I'm wondering if there's something else that could be causing the inflammation as well, but I thought I'd ask in case this was normal celiacs disease.
I am having my thyroid tested due to a number of weird problems I'm experiencing. The scariest problem I have is a terrible irregular heartbeat that mostly happens when I go to bed at night. It quite often feels like I'm having a heart attack with terrible chest pain. I've been to see 2 cardiologists and several doctors who have all told me that everything is fine. I've had all the tests done, but nothing seems to show up.
I have recently read somewhere that people with thryroid problems can quite often experience heart palpitations, so I thought I'd ask if this is a symptom. Also, I thought I'd find out if it is a symptom, did you experience any relief by going gluten free?
Oh thank you so much for your replies, I thought I was going mad!!!
I too am extremely dizzy and can't function properly. I'm struggling to hold a conversation at the moment and these symptoms have only happened since going gluten free. My doctor told me that the dizziness wasn't related to the gluten free diet, but I found it a coincidence that it happened only a couple of days after giving up gluten and lactose.
So, I'm soooooo new to this whole gluten free world (I keep forgetting to check the chopping board for bread crumbs and the tea towel for example). Anyway, I've been feeling really vague, VERY tired, lots of dizziness etc. I have been diagnosed with chronic fatigue as well, but I've noticed that these symptoms have become 10 times worse since starting this diet. I'm wondering if it's just a coincidence that everything is getting so much worse of if my body is adjusting to the new diet.
Did anyone else have trouble adjusting to the new diet or did you feel better pretty quickly after starting?
I've only been gluten free for about 5 days. I've decided to cut out lactose and refined sugar as well. But it's all very early days - I'm sure it'll take quite a while for my body to get used to it.
I have a number of other symptoms as well as the tiredness, but the tiredness is a killer. My biggest symptom at the moment is dizziness, which is pretty debilitating actually. I never thought dizziness was anything important till I realised that I couldn't drive a car or run my business
Thanks for your reply - it's interesting to see that gluten affected your energy levels so much. Hopefully after a while of a gluten free diet I may be able to gain even a small amount of energy back.
Well since they've told me that I could have the early onset of Celiacs Disease, I've also started discussing all the other inflammation I have going on in my body. I have rib pain, mild lung pain, now a swollen throat and extreme dizzy spells (which I think is a symptom of the throat issues).
My doctor has told me that it's likely that I have chronic fatigue syndrome but is testing for other auto immune diseases just in case. So far every blood test I've had has come back fine (full blood count, iron, lft,tsh etc etc), but he wants to check a tonne of other ones such as ANA, CRP (can't remember the rest).
So, for the moment I've been given Astra 8 which is supposed to be an immune booster. I have to take that for 2 weeks and go back and see him. I'm also gluten free, lactose free, and refined sugar free. I'm working my way up to going caffeine free and soy free but I'm so tired that I just need to take this step by step for the moment.
Has anyone out there been diagnosed with Chronic Fatigue? In me, the symptoms definitely fit - I'm just hoping that one day there's an end to it.
I was recently diagnosed with h pylori and was given two courses of hp7. The first one was probitor hp7 which gave me a bit of diaorreah, but if I took metamucil (soluble fibre) once a day the diaorreah went away and I had no problems at all. The second course was nexium hp7 and this gave me a weird taste in my mouth like I'd eaten an awful grapefruit. I also had a few days of mouth sores after I finished it, but other than that I was fine.
Other than those symptoms I had no problems whatsoever and the inflammation and stomach problems I had have gone. I still take losec as I've been left with a bit of gastritis but I'm going to stop taking that today as I've cut so much acid out of my diet that I think I'll be ok.
It's worth getting the treatment for hpylori - it's an awful thing to have and you don't want to end up with ulcers or esophagus trouble if you leave it. I'm sure there are celiac friendly medications you can take to sort it out.
I've only been on this diet for a couple of days and have a question about what you consider to be really gluten free.
A number of products such as cornflakes will state that they do not contain wheat but are made on machinery that may have been used to manufacture wheat products - knowing this, do you still eat cornflakes?
Having to shop in the health food isle is fine, but it is alot more expensive, so if it's possible to eat things like cornflakes or rice bubbles or other products that are not made from wheat or gluten but not necessarily processed according to gluten free guidelines would be easier for me (but only if the risk is worth taking).
Has anyone here had any reactions when they've eaten food with these sorts of labels on them?
Yesterday was my first gluten free day and I have to say that I felt exhausted by the end of it - really drained. I'm looking forward to the moment I get used to it and get my energy back.
My GI found lymphocytes in my small intestine so has suggested a gluten free diet and another endoscopy in 6 months. Given my symptoms, I'm sure that he's right about suggesting that it could be a sign of early stages of celiacs.
Anyway, I live in Australia and it's not too hard to be gluten free here - there's loads of products if you look hard enough, and many restaurants now have a gluten free option.
This is an amazing community - I spent quite some time yesterday having a look through the amazing threads. I can't believe how much information there is here. It actually has answered quite a few questions I've been having that doctors haven't seemed to help with.
I had the exact same problem with my son. He was so bad that he had internal bleeding - he was in so much pain every time he had a dirty nappy and some times it would take over an hour for it happen. It was heartbreaking - I did everything, took him to all the doctors and gave him all the medication under the sun (which never worked). The way that I fixed it was to put him on a lactose free formula. It took a few days, but he became much more regular and the pain was gone.
The only thing is - that even still to this day, his poops are still a funny green colour, but that's the lactose free formula that's doing that.
Goodluck and I hope you manage to sort it out soon. I know how awful it is to watch them go through this.