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
No bloods back yet - could take another three weeks (painfully slow!) but five days on the gluten free diet so I'm hoping if gluten is my problem then I will start to feel a bit better soon. My head is already feeling a bit clearer but I can't tell if that's just me being hopeful (is 5 days too soon to see results!?)
All my current vitamins are gluten free at the moment but they seem to really upset my stomach. I'll do as suggested and start taking them one at a time for a while and see how it goes. Do you have any idea how long it normally takes to see results from vitamins?
Thanks for this, taking one at a time is a good idea, it seems obvious now you say it but I never thought about taking just one and seeing it if also caused me to run to the bathroom straight away. I feel a bit lost with where to start though. I have taken magnesium in the past but via a spray so it didn't affect the digestive system so much (though within a week I was running to the bathroom again) - but the others I had that were recommended where B vitamins and vitamin C. I can't take a multi-vitamin as I can't have copper and I can't find a copper free multi here in the UK.
I would love to hear more about what worked for you with regards whole foods and supplements as I don't know where to start to some degree but I can't work out how to PM you! (I'm new to forums - can you tell
Anyways, thanks again all for your feedback - it's invaluable at this time.
Sorry - I feel like I may ask a lot of questions over the next few weeks as I settle into this. I have not been officially diagnosed with celiac (waiting on blood results) but have been recommended to begin a gluten free diet by my doctor to see how I feel when not on gluten as he suspects that even if the blood comes back negative my problems might be caused by gluten.
Anyway, I am aware that it is possible I am deficient in vitamins (it certainly feels as though I don't digest food properly and have no energy from it as I am always either suffering from C or the big D!), though my vitamin D levels came back okay. However, I also have an intolerance to foods that contain copper (soy, nuts, pork, milk and dark chocolate, avacado etc.) and was recommended by a nutritionist that I supplement vitamin C, B vitamins and manganese a few years back (sadly I couldn't afford any more appointments after that first one and she was not open to answering questions over the phone!). I tried these vitamins at the time and discovered I ended up with D almost straight away each time and that they also made me feel nauseas. I tried them again recently and found the same effects.
I just wanted to check if others had experienced this? Is it likely that because my body can't absorb nutrients just now then vitamins will just come right through me (so to speak!)?
Any advice would be helpful. I understand any advice given here is not medical - I am just trying my hardest to get better but I don't want to take anything that will make me worse either so it would be nice to hear others experience. My doctor is not the most knowledgable about vitamins etc. and I can't afford to see a nutritionist right now!
Edit: i'd also be interested to know how many people had to go onto a whole food diet to feel better... I have a partner that loves to bake (and has bought gluten free flours for that purpose!) and I have a tendency to eat some chocolate (as in maybe half a bag of white chocolate buttons) and a diet soda almost every day... - I was just curious if those things are likely to slow down any recovery I see or if all I should change to begin with first of all is gluten and then take it from there?
Lock - thank you so much for this detailed response. It's not overwhelming, it's wonderful. I just read your own story in this forum and it sounds like you are very knowledgable and also very brave - well done for making the decision to change your life now despite not having all the results, it sounds like it will make such a difference. I hope your family get onboard 100%!
Food wise I think I'm smart on being 100% gluten free, but I think I need to work out how to make sure I don't get cross-contamination (right now I have no money for new pans, kitchen equipment etc. so I will have to build up to cutting out cross-contamination in that regard once I get the money to buy bits and pieces) - I have quite a few social things planned in the next month because it's the end of my post graduate degree and there are celebrations planned so I will need to work out how to avoid being gluten-ed at those. It's the social aspect of things I find most daunting in that respect! How are you managing with that?
I think for me I need to make the change now - I just can't wait any longer. I'm not sure how supportive my doctor really is - he was keen to mention it could just be IBS as I left his office (sure, because IBS causes body aches, numbness, headaches, mood swings... sometimes it feels like the medical profession just wants to put on any label and get you out their office!), HOWEVER, I trust myself that I can stick to it because I'm at a stage where I am risking a lot of things if I don't make the change. I'm currently coming to the end of a Masters Degree and about to start a PhD and I'm at a stage where if I don't get well again I'm jeapordising that opportunity that I have wanted for a long time. It's also really taken it's toll on my relationship as I am tired and unwell and moody almost all the time - I'm fortunate to have a very supportive partner but I think there is only so long he can take (this has been going on in some way or form for almost our whole 4 year relationship) and there is only so much I can bare to put him through. Plus, there is only so much I can bare to keep putting myself though - I am 26 but I feel like I have less energy than my 86 year old grandmother!
Do you think it is worth cutting out sugar too? I have been wondering about that myself - I notice I don't always respond well to very sugary things or to alcohol, but i'm already finding one change a bit daunting. Ultimately I want to feel well again though, I think I can give up just about anything for that...
Can I ask what mood issues you were experiencing? (It is my mood issues I wish would go away first as they make it much harder to cope with everything else!). That sounds like a lot of physical symptoms, I'm sorry you have had to struggle for so long. There's a lot things I wonder if they are connected to gluten too - it will be fascinating to see how things change. Please keep us updated - I will look out for your posts and your progress
Is there any definitive way to know what vitamins you need? I tested that my Vit D levels were in the normal range... does that mean I'm probably okay?
And lastly, I'm a bit cynical about nutritionists anyways as I've seen two in the last few years and always felt like I had learnt more from researching online than they knew themselves! But I can see from your post why speaking with one would be helpful. I think at this stage I would probably rather save up and pay to see one than keep putting myself through unwellness just to get a positive gluten result... I am hoping so much to see results from this gluten free diet. I have never wanted more to just know what is wrong and feel better!
Good luck with your journey, I hope it is exciting and filled with pleasant surprises even if it might feel daunting right now.
p.s - this is only my second day gluten free. I have been constipated for weeks and when it stops I get the big D and then go back to C again. This morning I had a fairly regular bowel movement - perhaps slightly less formed than what would be considered normal but not D either. Sorry this is probably TMI but I wonder if this is a sign somewhere... It might be too soon in which case perhaps this is wishful thinking, but fingers crossed!
Thanks everyone - it's really nice to have some words of encouragement and feel like I'm not alone. As you will all be very aware it is a bit of a daunting process and as supportive as my family etc. try to be I feel like none of them really understand what I'm going through just now or just quite how bad it feels.
Four weeks for a blood test is brutal. Other results come back in 3-7 days normally but apparently celiac has to sit for longer before they can test the results and also where I am apparently it needs to be sent away to a special lab. There's a chance it will come back in 2 weeks but I've been told it's likely to expect up to 4. I will indeed call them on a regular basis though so they don't forget about it - that's a very good idea!
Orange - my thyroid was the first thing I had checked but it came back normal... I also got my blood count, vitamin D levels, liver and kidney function checked but they all came back normal too. Celiac is the only result I am waiting on now though they also took blood again to test for diabetes and glandular fever just incase (though they seem very unlikely!).
I ended up going to the doctor again yesterday because I was feeling so frustrated and his advice was that it makes sense to start a gluten free diet now and see how I feel in 3 or 4 weeks time when I have my next appointment. From his perspective, if it is gluten that is making me ill I may as well come off it now (and not bother with the biopsy if the blood works come back positive) and if I don't feel better by the time I next see him then we can start looking at other options. So I went to the store last night and bought a range of gluten free flours, pasta, etc. so I'm not tempted otherwise and as of this morning I am going to try gluten free and see how it goes.
I have a few more questions if that's okay though...
1. If i am testing a gluten free diet how careful do I need to be for it to work? I will stay well away from gluten containing food stuffs but do I need to be worried about cross contamination at this stage? And do I need to start raiding my makeup bag/toiletries?
2. I've done a good search and I think I have a good idea of where gluten may be hiding in foods - are there any it took people a long time to work out that I should keep my eyes open for? And if I want to make sure I have gluten free toiletries what words on the label should I be avoiding? (I have never seen any toiletries brands that explicitly state 'contains gluten')
3. How long should it take to start to feel differences? (I know this is different for everyone but basically I guess I'm asking if I stick with the gluten free diet for 3 - 4 weeks then should I have started to notice changes by the time I see the doctor again?)
Thanks in advance - in the meantime I'll keep searching the forum for answers!
Thanks so much again - here's wishing you all good health. Sarah x
I'm new here and have been reading through the forums for hours now, it is a pleasure to see so many knowledgable people in one place and to feel as though this might not all just be "in my head" as so many people have told me.
I don't have a celiac diagnosis yet but I strongly suspect that I have an issue with gluten as this is the only thing I have found that fits all of the many symptoms that I have:
- Constant stomach ache, often particularly bad after eating
- Nausea (to the extent that by dinner time I sometimes can't face putting food in my body)
- An almost constant dull headache (that sometimes progresses to a migraine)
- Brain fog, brain fog, brain fog. This one is the worst for me - I feel like I can't think at all, I can't order my thoughts or follow instructions/remember information like I used to
- Constant exhaustion (I have started having to sleep for up to 2 hours during the day just to get through until I can go back to bed, even when I have slept for a solid 8 hours the night before)
- Absolutely NO energy (I can't make it through a gym class anymore)
- Constipation for three weeks at a time, followed by diahorrea, and then back to no bowel movements
- Sinus infections
- Puffy face
- Red blotchy cheeks and dry, spotty skin
- Often swollen fingers with a rash (though this one comes and goes?)
- Inability to regulate body temperature (when it's a bit warm I am sweating and when it is a bit cold I am shivering and absolutely freezing)
- Easily out of breath (even after walking up the stairs which is unusual for me as I used to cycle daily and am a relatively fit person up until now)
- Achey achey body - especially my lower back and my legs
- Dizziness and fainting on two recent occasions
Does that sound familiar to people here?
These symptoms have been mild for a long time now but about six weeks ago I had an inner ear infection and fainted. Since then they have got worse with each passing day.
I got blood tests done three days ago which could take up to four weeks (!) to come back (i'm in the UK)... however, I'm nervous as I know blood work can be inconclusive/give false negatives and I feel like I can't go on like this much longer. I just can't take feeling this bad anymore. So my question is - is it worth waiting on the blood results before I change my diet or should I just take the gluten free plunge now and see if it makes a difference? I'm wary of starting because I believe they need to do a biopsy of the small intestine to give a diagnosis if the blood work is positive and I know it's necessary to have been eating gluten before that... however, that could be 8 weeks or more away from now and that is only if I get a diagnosis from the blood work!
Feeling quite confused about what best to do. Any advice would be so greatly appreciated as I feel quite alone in this just now. (I have a family who are quick to write everything i describe off to "stress" even though I know I'm not feeling stressed or unhappy at the moment at all - everything is good right now about from my health!).