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
Oh my goodness! A light has just been switched on for me with this question - I am 42 and only discovered I am celiac this year - obviously now, I have had it from childhood with tons of symptoms that have been 'explained' away or worse unexplained over the past 40 years.
When I was a child I often complained of a 'chokey' feeling!! I felt like my throat was closing in on me and I felt nauseated. I was a terrible eater with little appetite and my mum thought I was just being picky and making it up because I didnt want to eat my food. I was checked out over and again by the doctor who always said there was nothing wrong (which didn't help my cause as he was basically saying it was all in my mind)
I just grew up living with it and like everything else a celiac does, just thought that it was me and that was how it was supposed to be and feel. You just get used to your own kind of normal in the end.
I did end up having bouts of tonsilitis as a teenager and had my tonsils out at aged 18. The feeling I think eased over many years - that and I had got used to it so probably desensitized to it.
It was only reading this that I remember how traumatic and stressful it was for me all those years ago.
As an adult, looking back I have had it on and off over the years but of course never ever ever thought of any connection with what I ate - like I say, I only recently fitted all the jigsaw together and got myself an unofficial diagnosis (positive DQ2 genes, symptoms, and then totally symptom free feeling like a new person on a gluten-free diet) so docs have accepted in principal I am celiac though I will never go back on gluten to get the endo.
Sorry I cant be of help as to what to do but I would bet the 2 are absolutely related
I have had both of the symptoms you describe - the gurgling sounds like a starbucks coffee machine attached to a PA system. The pain is often acompanied by extortionate amounts of gas - like there will be no end to it and it is a living nightmare.
A few christmases ago, I came back from the in laws on xmas day and pain got progressively worse that I thought i was dying - it came in waves so strong I thought I was going to pass out and it made me feel very faint.
\even when I have come through an attack I feel injured for days.
When I am in pain and have trapped gas even travelling in a car is painful going over the bumps that I have to sit to one side.
I am self diagnosed with a positve gene test and have repsonded positively to a gluten and dairy free diet that these sypmtoms are increasingly rare thankfully.
Welcome to the forum:P
...and welcome to the start of your brand new life.
Iam nearly 4 months in and apart from the odd crash and mistake, my life is better than I couldever imagine when I was feeling as you put it 'crummy all the time'.
Everyone on here is lovely and some are very wise and experienced at all this gluten-free stuff so read, read and some more.
I have found that sticking to food as nature intended has been the best start for me. So I am eating roast chicken, potatoes - jacket, boiled, mashed or chipped, veggies galore (although I am a fan of frozen pease lol) . I eat salmon, beef, all the meats really. I eat crisps (read the ingredients as many are naturally gluten-free) and I have the odd treat like a choc bar which i check is gluten-free (many are).
On the whole, I find I have to be more organised - can't just say sod it I will have a take away and not cook tonight lol but its not that difficult.Once this option for pizzas and chinese etc was gone I kinda just accepted it really - it's easier than trying to lose weight and being tortured with the should I or shouldnt I school of thought. The answer is well if it makes me sick then I cant have it and that is that.Infact I really dont want it as I remember how bad I feel if I eat gluten stuff.
A word on the dairy - yes, stay of it for at least a month. goats cheese and sheep cheese feta were fine for me but other stuff including yoghurt of all things made me feel rotten. Your tummy just can't handle dairy until it hashad a chance to heal and the syptoms can be very similar to gluten so it is confusing. I am just starting to have cheese and milk now and I seem to be okay.
Eat loads of fresh veg and salad and fruit if you can. I love olives and herby salads so I am really enjoying salads again.
I suggest you don't eat out for a bit until you have built up some confidence - it just isnt worth it. I ate out in the early days and guessed or was given poor info. I was ill as a result. Now I know what to ask and I double check. I dont care about being a pain in the butt because I do not want to be ill its as simple as that.
Bit by bit you will get used to it and the change in your health will be marked - I can virtually guarantee it.
well done on your first 11 days. I have been gluten-free for just over 2 months and felt really good - totally symptom free after about 5 days.
I had some issues creeping back around week 3 when I realised through the wisdom on this forum that I must cut out dairy. I did this and felt better again in a matter of days.
I have had a bad week this week after accidental glutening by a prepacked microwaveable rice which was inadvertently served up by my other half as he got the packets mixed up. This brought a severe crash to constipation, irritability, brain fog, numbness, severe cramping and general low mood.
I cannot believe how low I was at the start of the week but I used the opportunity to remind myself firmly that it is my reponsibility to check and double check everything I eat while I am at the kindergarten gluten free stage of recovery.
To feel any benifit for me I had to go strictly gluten free - i dont have any issues with that as I am desperate to lead a normal pain free life. I know I am serious about it as I have actually had nightmares where I am being forced to eat gluten and those dreams have been highly traumatic.
Keep coming back here and read, read, read - knowledge is ultimately power to us as we go through this journey.
i have just come out of a bad glutening after being symptom free for just over 2 months. Its a rocky road that is for sure but someone once saod to me that 'the most difficult paths lead to the most wonderful views'
You are right to feel low - pain in crippling and takes over every waking moment when you are poorly so be gentle and kind to yourself and hold on to the fact that you will come through this and get even stronger. and in the meantime keep coming back here where there is a lot of love and understanding for you sweetie - you are work in progress and you will get there - do whatever it takes to nurture your health and aid your recovery xx
I have had this too! Before I was diagnosed (or self diagnosed with positive gene test and symptoms) I had a period of a few months where I honestly started to worry if I was pregnant and it was a baby moving inside me! It felt like a fluttering and twitching with NO pain just a very ODD sensation.
I found it would come mostly at night or in the evenings when I settled but I had it a few times when driving.
I never went to the doc but I put it down to 2 things - trapped wind trying to escape into abdominal cavity and also I think cigarettes and caffeine contributed as was drinking a lotof dietcoke and smoking at the time too.
I really dont think it is anything to worry about - after realising that gluten was to blame for all of my rogue symptoms over a 20 year period, just one more seemed normal LOL. I havent had the feeling in over a year now.
hello and welcome :)
I had an ectopic and a miscarriage - both took a long time to concieve.
Followed by 2 plus years of unexplained infertility, very painful and highly irregular periods (one every 45-60 days)
Had 6 months of clomid - no success.
At 40 got to top of ivf list but decided not to go through with it and be childfree by cholce (it has been a long and tearful journey over 10 years and we had had enough)
I am self diagnosed celiac at 42 and since going gluten free all symptoms have gone - i had the tingling and numbness you describe too.
My periods have returned to every 28 days - the first time in 20 years!
I may have felt differently if I was younger but now I have come to terms with being childfree through choice but I do strongly believe that celiac was the cause of my losses and UI and I am sad that it was never investigated.
There is a call that all unexplained Infertility patients are automatically tested for celiac (oxford medical journal) but as yet, i am sure many ladies are celiac and dont know that this is the cause.
Good Luck and like someone else said , there are many successful stories of motherhood after going gluten-free!
Hi and welcome
You will be in good company here I promise.
WOW, what a story and what an ending - I say ending but really it is just the beginning of hopefully continued better health that you are now experiencing!
I can feel the high you are on after finally discovering what was wrong - you sound elated and I am elated for you.
I feel the same high and I am a tiny bit further along the path by about 2 months but its a good feeling isnt it!
I have made errors along the way but with the good grace and knowledge of the lovely people in this community, i feel sure that I will get through this and come to serve others in time who need support too.
Keep us posted on how its going!
Hi and welcome to the board
I am sure others will be along to give you some words of wisdom as there are lots of lovely people here - many of them very knowledgable about all things gluten.
I am fairly new to dealing with this myself and have been gluten free (gluten-free) for about 2 months.
I cannot offer any knowledge on your skin condition but what I will say is that gluten (whether intolerant or celiac) can manifest itself in so many ways and symptoms so just becuase your rash is not typical it does not mean that it isnt gluten related.
I live in the UK so thankfully healthcare is free - although standards do vary, basic tests are free of charge.
I am self diagnosed celiac but backed up in principle by my GP - I had already gone gluten-free before blood tests so they came back negative for celiac.
I paid privately for gene testing and my gene test for celiac was positive. This does not mean I am celiac but i have the gene - so that along with symptoms and eradicating symptoms on gluten-free diet points to the highest possibility that I am. To get official diagnosis wouldmean going back on gluten and also a biopsy and I am not prepared to do that as I was so ill before going gluten-free. Many people are in this situation and do not get an official diagnosis.
My symptoms (you did ask lol) were:
A 20 plus year history of IBS related symptoms
skin blisters along hairline/backof neck hairline
absence of regular periods/unexplained infertility
2 pregnancy losses
bloating,hard and swollen tummy
tummy pains (lower tummy)
excessive gas or wind
irregular painful bowel movements
diahorrea - became more frequent this year
joint pains, stiffness and swelling
no energy - excessive fatigue - could sleep forever
low moods, tearful
bladder problems - felt like infections but all tests were clear
numbness and tingling in my arms and hands
overweight and not being able to shift any
hungry all the time but also feeling sick
sickness in the mornings
brain fog, getting words muxed up, forgetting what i was going to say, not thinking straight
Gradually I began to put the pieces of a jigsaw together - like youm through research - doctor was useless.
I cut out gluten and everything and I mean EVERYTHING disappeared virtually overnight. periods came back to normal cycle for first time in 20 years. more energy, lifted mood, no bloating, normal toilet trips - basically the lot.
hi and welcome
I would also suggest that you cut out Dairy products for at least 30 days and see if it makes any difference. I felt some instant relief of symptoms when I first went gluten-free but quickly deteriorated until I found out that while your body is healing or trying to heal, then cheese, milk, yoghurt and other dairy can have similar symptoms to celiac and at the moment your body may be finding it too hard to process dairy. After just a few days of cutting out dairy (much to my initial huffing, puffing and dissapointment that I had to be even more careful lol) I found that I was feeling much better and C and D which had caused me a lot of pain and distress had stopped and my bowel mvements became somewhat normal.
Aside from this - I find orange juice gives me the big D so maybe it is something more simple than you realise that is causing it.
Thanks for your replies - I called waitrose and they confirm it is gluten free. The vinegar is spirit vinegar and because it is distilled it does not contain gluten.
It's hard to get my head around the laying off cheese thing - I just couldnt imagine it would cause such burning and pain in the lower part of my tummy but I know that there is likely to be a lot of damage over the past 20-30 years and maybe the cheese and the vinegar acid in itself was just too much for my healing gut to bear.
I am feeling markedly better today - Its hard though isnt it - especially when you know you havent eaten gluten and you still get pinched. I have thought to myself - maybe there is something sinister being uncovered here since i stopped the gluten but I am trying to have a positive mental attitude and say to myself that it is celiac and i will have some flare ups as I get to grips with a new way of life no matter how strict I am trying to be.
Can a tiny bit of gluten make all the difference - to some it obviously can - it is an unbelievable disease isnt it. x
I have been on a high the past 5 weeks since commmitting fully to gluten-free (as long as I can get my head around the labelling).
I crashed this morning with sore tummy (pinching and injured feeling)and a return of gas although nothing like it was before gluten-free.
There are 2 things that I figure may have caused it and would appreciate your input - firstly I had some essential waitrose mint sauce on my home cooked roast lamb last night - on the label it didn't mention gluten but it did say thickeners and spirit vinegar. Could it be the vinegar and also what thickener may have been in it that may cause a reaction?
I am eating a little grated cheese on a baked potato most days and wondering if it is a delayed sort of catch up reaction to that?
The tummy discomfort is about 3/10 on my pain scale and nowhere like a full blown reaction but enough to make me feel pretty crabby and lousy. BM have remained pretty much normal.
pain is like a mild menstrual cramp but is kind of numb and removed if you can possibly understand what I mean?
I am self diagnosed with back up in principal from my GP due to going gluten light before blood test(neg), no biopsy, positive DQ2 gene, symptoms and removal (until today) of symptoms after going gluten-free. Had the classic journey to here after 20 years of misdiagnosis of IBS etc. All other symptoms are clear at present including edema which I had not attributed to celiac but have noticed that for the first time in years I hav no swelling.
Any input gratefully received x