could i have coeliacs disease or anot... - Gluten Free Guerr...

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could i have coeliacs disease or another type of intolerence??

lynn81 profile image
9 Replies

my brother was diagnosed 5 yrs ago with chrones, alot of my symptoms are mild versions that are similar to his, i get bloated on regular basis , feel full very quickly even when ive been hungry for ages, constipation or no stools for days, extremely tired and lathargic,bad mood swings, aching bones, i have had severe migranes that i had mri scans, evps and a lumbar puncture the out come was white tissue scarring on the brain probably caused by the migranes no tablets worked . i eat fairly heathily (pasta, cereals, fruit, meat, yoghurts) and have an active lifestyle.

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lynn81 profile image
lynn81
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9 Replies
Abby profile image
Abby

You've practically just described most of my symptoms- it would be interesting to see the replies to this and what people think of it. I coped really well on a GF diet and most of the symptoms eased off gradually- the worst one wass the reflux and bloating! But now I'm back on the gluten for the diet, for testing, they've all come back in vengance! Along with some skin problems and a bowel worse than before.

I'm awaiting blood results and will definitely be getting further testing whatever the results- so I'll let you know the outcome. The thing is we're not exactly sure what we're testing for so it's be good to hear what other people speculate from your post.

lynn81 profile image
lynn81 in reply to Abby

thanks abby, i have a doctors appt next thurs it'll be interesting to see what he says. although they never found the cause of the migranes and although they are less frequent now i do still get them, and they usually follow on from the bloating/tummy aches. please do stay in touch and let me know how your tests come back, i hope everything is ok and you get the answers you want, if like me you know something isnt right and just want answers now!

Lynxcat profile image
Lynxcat

Hi Lynn, Sadly most people that are eventually diagnosed with coeliac disease go through several years wondering what is wrong with them. Often first blood tests may not pick up the problem. It's almost as though there is some sort of pre condition where symptoms occur but no allergens are present. Added to this are the variety of symptoms that many coeliacs can present with. It is very confusing. The type of symptoms that may occur often change with age. Much of the description of the type of problems you are having can occur in a coeliac. Bloating and constipation are quite common especially when the disease presents outside of childhood.

I would suggest that you ask for a blood test for coeliac disease. Start to keep a food diary and write down absolutely everything you consume even the odd nut or sweet .. list anything and everything - at the end of every day record every symptom you have experienced on that day. Some symptoms may occur from food items that you may have eaten the day before or even several days before but what you should start to see is a pattern.

Sometimes it is helpful to strip right back and make the diet very simple for a week or two - it may be boring but you will then be able to see if you still experience any symptoms. If you ask to see a dietician they will help you to do this and advise how to do it safely and sensibly, gradulally increasing the variety of foods you take in and hopefully finding foods which are causing concerns.

If you do get diagnosed with coeliac disease you will find out over a period of time, that there are many items that contain some form of gluten. For instance sugar syrups may be made from wheat or barley often disguised under the name of dextrose, dextrin, maltodextrose, maltodextrin.

It is important to keep asking questions you can never really ask enough.

Good luck and I hope things begin to improve for you soon.

Wendy-j profile image
Wendy-j

That was exactly how I felt for years before I actually diagnosed myself. Doctors made me feel like a hypochondriac :( 2 years on I feel absolutely fantastic :) good luck x

lynn81 profile image
lynn81

thanks lots, i had pizza last night and felt bloated this morning and my stomach has been very vocal all day! so glad to hear you all feel better now but im dreading having to read all the labels etc if i am diagnosed with coeliacs, it must be a nightmare and take much longer to get the groceries than normal, surely its easier to go with a list of things you can eat as it would be pretty short!. i'll have to see what they say next week, but im not that confident theyll find anything as they done soooo many tests for the migranes and couldnt give me any answers. im trying to give up the fags too i only smoke at weekends and was horrified to find the nicotine replacement costs me £15 thats 4 x a pack of 10 cigs !! this healthy lark is very pricey!!!

meanioni profile image
meanioni

Firstly I would suggest trying short term to go to a diet where common triggers are removed (gluten, milk, eggs, soya, shellfish, etc) - keep it simple - meat, veg, fish, fruit and see if you notice an improvement. Ypu could then start to reintroduce foods.

Keep a food diary and list out what you have eaten and drunk and your state of health. you should start to see patterns forming if it is a particular foodstuff or ingredient. Takes time to do and requires honesty (it is quite amazing in the course of a day what one consumes and tempting not to include items on a "guilt" basis! But you must record everything - by doing this I discovered a tiny amount of gluten in some sweets I was eating that I did not eat a lot/often and for which the apparently random nature of my attacks was driving me bonkers! Until I realised it was them not my other intake).

You may find that there is another lurking intolerance/allergy. I had similar occasional symptoms and discovered two years after going gluten free that I was allergic to milk.

Other common allergens/intolerances could include yeast, soya, fish/seafish. eggs or nuts.

Keeping a food diary should help and if you are not sure get your doctor to refer you to a dietician and the food diary will speed up the process of establishing the root cause (be it a hidden gluten containing substance, milk or something else).

lynn81 profile image
lynn81 in reply to meanioni

thanks meanioni , i will stay on my normal stuff 'pasta, fish,chicken,toast,sarnies,choc, yoghurts etc this week and see what doc says then i'll have to start a selective diet to see what foods are causing what symptoms, i have been keeping a diary of what i eat and what symptoms i have etc its a waiting game i guess, thanks tho xx

lynn81 profile image
lynn81

what do i ask for when i go to docs on thurs? i had another bad migrain lastnight , managed to force myself into work today, feeling very tired, aching and bloated ! even showed my customer my bloated tummy and she was shocked!!, i really want to get sorted out! what do i ask the docs for on thurs? what tests, questions should i ask? ive been with most of the symptoms at different times over the years and got no answers, they make me feel like a hypochondriac, im only 31 i had to stop working with horses after 3yrs as my body ached sooo much and i was at the docs with back ache and tiredness, migraines, tummy aches, mouth ulcers (on my tongue mainly), depression, i used to run but cant do that now either. gggrrrrrr im very outdoorsy love being with the horses, walking, running, gardening etc im now a self employed cleaner and can only manage 20hrs a week plus doing the horses 10hrs a week, i used to do a 40hr week plus horses plus the gym or running.

Sappho profile image
Sappho

Sorry to hear you are going through this. Tell the doctor your symptoms and write them down if you have to . Tell him you think you may have celiac disease or intolerence to gluten. Its a bit of a lucky dip with doctors I am afraid, some will listen and some do not want to know. Ask him for blood tests for it, there is more info on what to ask for elsewhere on here. Keep a food diary if you can. The good news is that once you know what it is you can cut out the foods that do it to you as you find out what they are. You start off simply with the fish and meat, fruit and veg and go from there. You show many of the signs of having celiac disease. The tiredness is part and parcel of it I am afraid but once your diet is right the energy should come back!

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