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
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My dad was born premature and was very sickly - they thought he woudlnt make it at the time, and has never had a strong immune system since, and finally diagnosed coeliac age 30-ish after kept having "flu" several times a month. I on the other hand am the eldest of his three daughters and was born 15 days late - yes thats over 2 weeks - the most late of the three of us and i am the only one so far to be coeliac.
We do defnitely have lyme disease here in the UK, which is in Europe, though it is thought that you are only susceptible here if you come into contact with wild deer in countryside areas - two examples of this are Silverdale in the Lake District/North Lancashire and the Scottich highlands. i ahve been to both of these places, but supposedly if you check for ticks afterwards and dont have any then you shoudl be fine. however, i had coeliac disease before i went to these areas and had not been to vulnerable areas before being diagnosed as coeliac. just a thought.....
hiya. sorry to hear about the problems you are having. just so you know, not everyone's gut will heal in 10 weeks, especially if there are other things youre stomach is not agreeing with. try eating less acidic fruit if possible such as bananas. also im not sure about the burning tongue, but i do know that the best treatment (natural) for B vitamin deficiency is marmite as it is the richest natural source of B vitamins.
Ok, i just looked up burning tongue in the "You are what you eat" Giallian Mc Keith boook which is really helpful as it tells you foods to eat to sort things out. for burning tongue it says it is a sign that your stomach is lacking in gastric digestive juices. "You may also experience tummy trouble if you have this symptom". obviosuly. this book is not written specifically for coeliacs lol. solutions:
try taking a teaspoon of Swedish Bitters daily. It will help to increase your gastric secretions.
Drink a cup of dandelion tea twice a day
Take a teaspoon of apple cider vinegar before each meal
HCl (hydrochloric acid) tablets can help to adjust the gastric juices in the stomach.
As for the food in stools issue, tahts is also covered in here - basically it means that your digestive system is weak. says to try chewing food very thoroughly. also im guessing your stomahc will be stronger after being on the diet for a bit longer. hope this helps anyway. take care x x
I would go with some sort of virus as far as the coeliac thign is concerned, as coeliacs are more susceptible to bacterial and fungal infections, yet from my experience practically impermeable to viruses (apart from herpes simplex which technically is dormant in your body for your whole life from childhood, and apart from when coeliacs have ingested gluten). ive mentioned thsi before on here but unless i eat gluten and the same with my dad we never ever catch flu, colds or stomach viral bugs. weird really. same thign with my gran who died from bacterial food pooisonign on a hospital ward infected with norwalk virus. so i would look in that direction.....
and before you ask the plague was one major killer but that was caused by bacteria - Yersinia pestis, so is unlikely to be that....
hiya. just wanted to say that i had both an endoscopy (gastroscopy) and sigmoidoscopy (the gastro first then the sigmoid about 5 minutes later), and i had both without any drugs at all, including amnesiacs. i was only 19 at the time, and after reading what you put about teenagers and having hallucinations i am really glad i didnt have it. that is sooo scary. i never even knew it was ketamine that they used. very worrying. however, some part of me does wish i dotn remember the gastroscopy - after that i wasnt that bothered about the other one as long as i didnt see the screen as that was gross. gastroscopy was horrible though i started havign a panic attack as soon as they sprayed that stuff on my throat cos i tought i coudlnt breathe properly, and then they offered me the "sedative" yet again which made me panic even more as i am really terrified of needles - thats the whole reason i said no to it in the first place. from then on, i had to watch my hands as i didnt trust them not to try anything while i was distracted. was horrible though i was throwing up loads of stomach acid, and when the dr did the biopsies he whipped the wire up really quick, and the motion is really not good on your gag reflex.
though i could understand the dr afterwards all he said was yes so ill write to you when we get the results back. really informative.
however, my dad had gastroscopy with same gastroenterologist about 15 years before i did and was diagnosed with coeliac, but he opted for the drug and my mum said he was still gagging loads and didnt remember anything for the rest of the day and was totally out of it. doesnt sound too smart to me, but thats just my opnion...
hiya. just wanted to add the best easy/natural treatments are figs, prunes and the best cure - 2 glasses of apple juice a day. just in case things go the other way, cinnamon is a good cure for diarrheoa. hope that helps x x
thanks to everyone who has replied so far, for your help and stuff , its greatly appreaciated. Carla B - I do tend to eat bland foods when it starts mainly because i become scared to eat as i get pain about 30 minutes after eating anythign substantial, so little and often is teh way to go, and usually have things like bowls of custard/rice pudding, as i find that increasing dairy intake usually helps it heal quicker, but other than that avoiding foods doesnt really help i just have to wait for it to get better on its own. i forgot to mention that when i had this goign on in march, it was bleedign for a month before it stopped. ive had it once since then about july when i ahd it for a week, and it started again last weekend, which appeared to be from having some peanut brittle and then some salsa a few days later, even though i shook most of it off the tortilla chips.
Cindy - thanks for your help i will check that out. Rinne - I have quite a few otehr symptoms, but i try and hide them if they are not bothering me greatly,and i think i can sort them out/treat them/predict them myself, as i really dont see the doctors or anything unless i need to. basically ive had the bleeding on and off for a total of nearly 8 years (since i was 15). in fact it was due tto that and the GERD gettign so bad that i finally decided to get the dr to find out what was wrong with me (and my dad is coeliac otherwise they may never have tested me for that). but basically before i was diagnosed coeliac i was havign blood sugar issues, and had initial test doen by a nurse and it was 11.1 (several horus after eating when i was about to have my lunch lol). though i only tend to notice if its low. she told me to get the dr to do full blood panel for diabetes, but i can pretty much control it myself, and carry glucose tablets in case it gets too low. she also suspected i may have start of MS and also have fluctuation in thyroid function (as i suffer from very fast pulse even though my BP is normal). (symptoms inc: fast heart/pulse rate, dizziness, muscle twitches/contractions, shaking, weakness, fatigue, bad memory, and that pretty much sums it up cos i cant remmber what else lol) apart from that though, i just dotn absorb vitamin K (so blood doesnt clot very well) and iron (so become anaemic).
autumnE - i havent actually had a colonoscopy - just a sigmoidoscopy which is the same but on a smaller scale - they dotn look at as much. sigmoidoscopy was just after the endoscopy/gastroscopy though which was 3 years ago, but i had really bad diarrheoa at the time, so he knew about the bleeding when he looked at my gut at the time. it was my GP who referred me to teh gastroenterologist, and he is the head of the department...so not sure quiet if i would be able to get a second opinion. i hate how veery tiem i go and see him though he always has a plate of biscuits on his desk. i mean its just plain mean isnt it?
Nikki - i havent had a second biopsy mainly because i hated the first so much, and i had it without any sedation at all as i am sooooo scared of needles. but i had a blood test i think 2 months after i went on the diet and a few since, which were all negative for antibodies. my dad had the second one though, but they waited til he had been on the diet for 10 years.
Nini - hope that answered your query soemwhat too - i am definitely gluten free at the moment. i can tell if ive eaten even a tiny bit as i always get the brain fog even if i dont get teh GI symptoms. I have been trying to avoid those foods - liek for example i am ok if i chew the nuts really well, but i dotn know, its very confusing really. as well as teh fact that when i saw my nutritionist she said i had to be careful not to restrict my diet too much but i dont think she realsied how badly the foods i was describing affect me. do actually cook most things from scratch - thats why i still live at hoem as me and my dad are coeliac, so it is a lot easier, and he never gets the bleeding, and he is more sensitive to gluten than me. rather unfair really....
sorry about my dodgy typign by the way but i havent been gettign a lot of sleep recently, as the bleeding tends to give me stabbing pains, which can be faint or quite bad - thats what i take the anti-spasmodics for (lots of small stabbing pains rather than one large one). my other main problem is that liek today, my stomach is giant, and i had to wear a hoodie to work to dhide the fact i look pregnant. i dont have wind - but my waist has goen from 30 inches to 45. weird....
thanks again to everyone x x x x
Hiya. Sorry wasnt sure which section to put this under, and wondering if anyone could give me some advice as i dont know whats wrong and silly doctors are not really helping.
Basically its exactly 3 years now that I have been diagnosed as coeliac and been on the diet, and adhere to it pretty strictly. Basically when I was diagnosed i had the blood test, followed by the gastroscopy. However, I also had GERD at teh time, and also unexplained intetsinal bleeding, so they did a sigmoidoscopy as well. Basically he said that whenever I get bad diarrheoa my gut cant cope, and my blood vessels are very near teh surface after the villi being destroyed, and told me it should improve with a gluten free diet.
Anyway, 3 years later and the bleeding has just been gettign worse if anything. I always have diarrhoea, and i dotn even have any fibre in my diet so i have no idea why. i still have the bleeding problem as well. some foods in particular seem to set it off, but other times i dont know what it is. i have noticed that nuts and seeds, and dessicated coconut, as well as spicy foods, black pepper and chili are all problem causing. i had trouble if i ate over 15 grams of chocolate a day before the diet, but now i am fine with chocloate. i dotn understand. its very confusing. earlier this year the bleeding got so bad that they were going to hospitalise me, but i really dont like needles and dont trust hospitals, so tried changing my medication instead. (it may be coincidence that this happened a week after i tried oats for the first time since diagnosis but later realised they must have been contaminted with wheat anyway.) anyway at that time my gastroenterologist said he wanted me there so he could do exploratory surgery (!). i was really not keen on this and went to see my GP (normal doctor) instead. he diagnosed me with having IBS (which is often mentioned on this site is aka i dotn know what it is), and gave me mebeverine, and when this didnt work well, gave me alverine as it is stronger, and also gave me procteosedyl and peppermint oil capsules as he said this should help. my gastroenterologist failed to admit he had missed tehre was soemthing else wrogn with me apart from coeliac disease, and was just like "yeah, well IBS is even more common than coeliac disease, 10-25% of people have it". which didnt exactly fill me with confidence that he knew hwta he was doing. anyway what he wanted to do was exploratory surgery, including tying off the blood vessels which were causing the problem. though i think this is stupid - i think he only wants to do it because he wont admit there is another problem until he has seen what it is exactly, and also thsi is stpid, because surely if i accidentally eat soemthing that doesnt liek me again, surely teh bleeding will start again. i need to know what is causing it in the first place. surely he should at least test me for other intolerances causing me to have D all the time before doing surgery?
also my other problem is that it is making me very anaemic - i normally have to take the pill continuously to prevent time of the month, so as to not become mroe anaemic, as the only iron tablets which did not make me ill - Slow Fe, have now stopped being made. and supposedly youre not suppoed to take iron tablets with IBS anyway...
I dont know, any advice please...
Try taking some zinc supplements and calcium+vitamin D supplements - if you are deficient in vitamin D you wont absorb teh calcium properly no matter how much you have in your diet. try the supplements a while and see how you get on. you may want to ask for a boen density scan as well though, to check you dont have osteopenia (weakening of the bones, whereas osteoporosis is crumbling of them). hope that helps, take care,
hiya. it may be because you are not absorbing the iron in your diet, and it is being passed otu again. that is why it is black if teher is blood teher - because of the iron in your blood. that is also why if you take iron supplements, wheteher in tablet forms or another they turn black, as there is always too much for your body to absorb. however, whether it is blood or iron being passed is impossible to know without consulting you doctor, so thats what i would do. dont want to have low iron levels again - which they may be, wheteher youre malabsorbing iron or passing blood....
hope things go ok anyway, take care
Hi. Just wanted to let everyone know that if anyone is visiting the UK at all, there are actually gluten-free hotels here - usually one of the owners is coeliac, and it means you can have a great holiday without worrying about the food
I'm about to leave now to go on holiday - driving down to the south coast of England, and getting the ferry from Southampton across to the Isle of Wight, where we are staying at a gluten-free hotel - and the menu looks really nice .
Anyway, if anyone wants any more info, feel free to PM me or email: firstname.lastname@example.org
I'll reply when I get back:)
Me and my Dad are both coeliac, but my mum and sisters are not, and both my sisters are veggie, so going gluten-free is not really practical. We have designated gluten-free toaster, gluten-free butter dish and also gluten-free jars like jam and peanut butter. We do not have a designated worktop - I always just use chopping board or a plate instead, as its just easier, and my sisters do tend to leave crumbs everywhere. Also when using things like the grill, I always get a new piece of foil to put down just to ensure its safe.
I know that probably doesnt help much, but I guess you were just wondering what everyone does. Good luck to you with eliminating cc anyway
Ever want to talk, please feel free to email: email@example.com
Hi Lori and welcome to the forum. Basically the deal with Kellogs cereals is that all of them contain malt extract, which is derived from barley. However, all teh cornflakes brands have recently gone off the gluten-free list over here as they were found to be above the Codex Alimentarius level (this is a guideline amount for the maximum amount of gluten which can be a food and it still be gluten-free). However, the rice crispies, coco pops,and ricicles are all still gluten-free, as although they contain malt extract, they are within the Codex guidelines. Our Coeliac organisation over here made a whoel big deal out of it, but thats the summarised version.Over in England, the organisation produces a full list of all gluten-free products. If you have any questions please feel free to email me: firstname.lastname@example.org
Take care and good luck with following the diet - I hope things start to improve for you soon - eating cinnamon or having it with desserts or drinks can help improve the D problem