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nikky

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  1. Not everyone with coeliac will get a noticeable reaction when they eat gluten, but the damage is still done inside, at first i had no reaction, I was diagnosed after recurring aneamia. At the time I also had a negative scope, but now if i eat the slightest trace I feel as though i have a severe flu and my lips and tongue swell up. Reactions can get more severe with each dose of gluten, so its important to keep her off it, she'll thank you for it when she's older and understands more. 

     

    One reason she may eat less is that when she was eating gluten, her body may have been struggling to absorb what it needed which triggered her to feel more hungry and therefore eat more but now that shes not eating the gluten, her body can begin to heal which will allow her to absorb what she needs more easily. The first few months I was gluten free my weight dropped substantially but over time my appetite picked up and I put the weight back on,

     

    If she keeps loosing weight it might be helpful to look into other intolerances, especially dairy, many people with coeliac disease find lactose hard to digest during the first few months/ year due to the damage in the intestine. Over time the majority find they can slowly re-introduce the lactose once they've healed. 


  2. This does sound more like coeliac than a regular gluten intolerance, damage from coeliac makes it difficult for the body to absorb nutrients which would explain your persisting aneamia, mine didn't settle until I was fully gluten free for a few months. .. what other symptoms do you have?

     

    How many times have you had your bloods checked for coeliac? sometimes they can show up as negative but be incorrect.. I think it would be a good idea to try and get your doctor to repeat them, and see if you can get yourself a GI who will give you an endoscopy to check for damage. The family history of autoimmune diseases certainly makes coeliac more likely. 

     

    Even if it is a regular gluten intolerance it is important to be strict and try to avoid gluten, intolerances can become more severe over time and may end up making you very unwell. 


  3. Wasnt really sure where on the forum to post this, but thought this might be the best place.

    Im an 18 year old (19 in a week and a day) female from the UK and since I've been 17 i've had problems with very painfull periods. Each month I find myself curled up in bed with a hot water bottle and unable to carry on with day to day activities. I've tried all manor of remidies, breathing excersizes, going for long walks, running, numerous medications and even herbal remedies, and none of it seems to help. Due to this my doctors have mentioned hormonal contraception, which, due to complications, is limited for me. The easiest of the available options is the mini-pill(progesterone only pill) which the doctors seem to think is safe for me. However, when I went to a drop in clinic for under 25s at a health centre yesterday, the nurse told me that she would be very reluctant to perscribe it to me due to the low absorbption associated with coeliac. I explained to her that my coeliac is well under control, I was diagnosed 4 years ago and that appart from a few accidents with being CC'd at the start, i havent had any flare ups since.

    Despite this, she said that she would still be uncomfortable as she wouldnt know if the coating on the tablets would cause a flare up, but surely if i made sure there was no gluten in the brand i was perscribed before taking it, it should be fine?

    I really need to get this under control as I'm starting a nursing degree next year and really cant afford to miss the time off Uni.

    Would be grateful for any thoughts on this or anything you can tell me from your own experience?

    THANKYOU :)


  4. Could you get some stuff like pnut butter, crackers, dinty moore beef stew or other shelf stable stuff that you can keep in your boyfreinds room?

    While it sounds like this woman is a real witch she may have fears that you and her son are going to do something like get married or move in together and he will forgo college or that you may end up having a child together soon and 'ruin' her dreams for her son. In other words she might try to drive any girlfreind away from her 'darling son' and it may have nothing to do with you being celiac but that you are a threat to those 'dreams'. I know I was terrified of that happening when my DD was a senior in high school and was talking about marrying her then boyfreind. While I didn't get hostile I was very relieved when she started to apply to colleges and they ended up at schools close to each other then broke up a month into their freshman year. Perhaps reassuring his mom that you have no intention of marrying until you have both finished at the university might help your relationship with her a bit.

    thanks for your advice...

    After my last visit, I left a jar of sweet and sour and some soup in my boyfriends room, which he later found her trying to take out of there to use herself. When asked her excuse was that i wasnt there, when my boyfriend pointed out that it was me that paid for it and therefore it was mine and she had no right to use it, her answer was that it was in her house and therefore was hers.

    I can understand the concern there... but my boyfriend doesnt want to go to uni, where as i do, you are right though, we dont want children or marraige until afterwoods. He does tend to look after his younger sisters a lot though, even when I'm there they just get dumped on us for hours at a time, and secretly i think she could be concerned about losing her child care and the money he pays her to stay at the house as she always makes comments about how little money they have (neither her, or my boyfriend's step-father work).


  5. My mother in law constantly comments that she truly believes that since my illness came on so suddenly, one day it will just as suddenly go away and I'll be cured. Oh yeah, and did I mention she's a doctor? No wonder we all have such bad experiences with doctors! My husband and I have politely told her on many occasions that it will never go away. But next time I don't think I will be so polite because I'm getting a bit tired of it. Having said this, she does cook gluten free for me when I'm over there.

    Oh dear.. thats not reassuring for her patients is it? a worrying amount of doctors seem to have very little, if any, understanding of this condition...


  6. TOTALLY agree. I never ever ever rely on anybody else to feed me no matter where I go (I mean at someone else's house). I bring my own food. If it's my parents (mom is gluten free so it's not a big deal there) or my in laws, all I ask is that I can go shopping for my own food as soon as I get there, and can I store it somewhere and can I cook my own food? Or...food for everyone if they'd like to eat yummy gluten free that night. I would NEVER expect someone who wasn't even related to me to accommodate me in any way.

    I DO cook for myself there, i dont expect anything like that. As i mentioned in my original post I have asked to be allowed to get food for myself and store it there but she always turns it away... At 18 years old its not always easy not to have anything to do with someone or let them near your food in their own house.


  7. I wouldn't even be cooking in her kitchen because it is likely a gluten minefield even if the food you are cooking is gluten free. The answer to the problem is to cook for yourself and your boyfreind at your home and to avoid hers like the plague. Eat your meals at home and just bring a wrapped snack with you. Why isn't your boyfreind laying down the law to her? If he isn't standing up firmly for you now for heavens sake don't even think of marrying or having children with him as it will only get worse.

    Thanks for your advice, yeah, the kitchen is a minefield, i go in and clean like crazy in there. I do want to point out though that he does stand up for me, they've had shouting matches over it, the week we were on our own, he went out and spent all the money he had to get me safe food, he is really good to me.


  8. Why are you in this evil person's house? If she told her friend she was going to stab you while you are sleeping, would you stay there? Would you even go for an hour visit?

    Please do not have children with this guy. He may be OK but his mother isn't. And if she has a husband, he isn't good either. Your children would never be safe around her. Your life would be a constant battle with the kids father as he tries to take them to visit his mother. Or let's them be around her.

    The fact is, she doesn't like you and she is a mean person. If it weren't gluten it would be something else. Be glad you found this out before you have her grandchildren or marry her son.

    Firstly, I havent been to the house since she said that.

    secondly, it is not my boyfriend that is the issue, if he had the money hed be away from her by now. As it is we are moving next year for me to go to uni.

    And if i had married him, would you suggest i divorce him? I dont think so..


  9. No offense but it sounds like this lady really does not like you and this is her passive-aggressive attempt to get rid of you.

    I would no go to the woman's house. It's dangerous and you are clearly not welcome. I wouldn't want to be where I wasn't welcome.

    Hopefully your boyfriend can come up with a solution to see you outside of his mom's home.

    Yeh its a horrible feeling. He tries his best to come see me here but its not always easy with money. Thankyou for your help :)


  10. This woman obviously hates you if she wants to deliberately make you sick and tells her friend "I know and I don't care." She is dangerous. You and your boyfriend need to get your own place and never ever go back to her house. Would she feed sugar to someone with diabetes? Or peanuts to someone with a peanut allergy? She is mentally ill or something. What is wrong with people like that? It's really quite horrifying. :(

    Thanks for your advice, happily we intend to get a place when we are able to afford it, although that may be around another year. Its funny you mention diabetes, she's actually diabetic herself and so should have an understanding of the difficulty these things create.


  11. I'm slowly getting to the end of my teather with my boyfriend's mother. She shows no respect for my inability to consume anyting with gluten in it and whenever im at the house she tries to feed me bread, pastry, pizzas and gluten containing frozen foods including sausages and burgers that contain wheat flour. She also refuses to let me store food safely and whenever me and my boyfriend are trying to cook she will come into the kitchen and start telling me what I am and arent allowed, constantly giving me gluten containg options and getting agitated when I tell her that I'm unable to eat it because of the coeliac.

    Both myself and my boyfriend have spoken to her on several ocasions, explaining to her foods that are/arent safe, why its easier for me to be allowed to look for things to eat and all about cross-contamination, but none of it seems to sink in. I've given her an official list of foods and ingredients that need to be avoided, and have even told her I'm prepared to supply some food myself provided i can store it safely when I'm staying.

    Two weeks ago, she and her husband went on holiday,leaving me at the house with my boyfriend. Before she went, she promised to go shopping for food that we could both have. When we later looked, we found the fridge, freezer and cupboards full of sausage rolls, pies, pasties, wheat-flour containing soups, pizza, biscuits etc, and vertually nothing that was gluten - free.

    I've also explained that I am not expecting specialist foods to be bought, but that just by changing brand a food can become safe or that life could be easier if i was allowed to sort it myself without interuption.

    She has also said before that shes been tempted to 'experiement' with food for me and my boyfriend and last week my boyfriend told me to never leave her with anything I'm going to eat as he over heard her telling her best friend that she wanted to spread bread crumbs in my food. When the friend then raised the point that it would be harmful for me, she said 'I know, I dont care' :(.

    I've tried several times to explain the seriousness of the condition, but she has convinced herself that I'll just get a 'bit of a bad stomach'. The last time i had gluten my lips were swelling up and it felt like there were knives in my throat and stomach.

    Any advice???

    (Just want to add, my boyfriend is completely supportive, and is constantly trying to learn about the condition and get his mum to listen.)


  12. I have endo and also gluten free. I have also had severe pain that time of the month since I started at the age of 10. I finally found something to help with the pain. Wild yam cream. Hopefully that will help because gluten free didn't help like I had hoped it would. Good luck

    thankyou :) where do you normally find it?


  13. Your situation sounds like a complication of Celiac Disease, to me. Did you look up the list of complications associated with the Celiac Disease. Remember you were born with this disease. I do not know how long you have been treating this disease of yours but, it sounds like some complications are setting in on you. Check out the list and see if any of those condtions fits your situation, OK.

    As others have mentioned... you are born with a genetic predisposition to coeliac, not the condition itself.. it has to be triggered, in my case this was by a bad virus when i was 14... ive been treating the condition for almost four years, and i am well aware of its complications


  14. I'm an 18 year old female and for the last year, i have been suffering from increasingly severe abdominal and pelvic pain that can leave completly unable to function. This is especially true around the time of my periods, where i can be left crying in pain, unable to sleep and missing days at a time off college.

    I have been to the doctors many times, and have gotten no where, until a physical exam a few weeks back showed up some 'questionable' findings and i am now having an ultra-sound next week. In the mean time i have been doing a little research of my own, and have discovered a lot about endometriosis and its symptoms, and i must say, it seems to explain a lot about what ive been feeling, the tiredness, the headaches, the nausea and of course, the crippling pelvic and back pain..

    So i was wondering what your thoughts are on this? Could this be the explination? Are there links between coeliac and endometriosis?

    Thanks for reading :)


  15. Miki -chan

    first of all welcome to the community! :)

    your not the first to struggle, and you wont be that last, so dont beat yourself up about it, its a big change to deal with and it effects us all in different ways. Sometimes it can be difficult for friends to understand not only what coeliac is in the first place, but also why it has to be taken so seriously. one of my first thoughts when i was told i might have celiac disease was how was i going to explain this to people. I had to take my friends to the side one-by-one and explain to tehm all seperatly. Some of them just needed the basics, i.e. no gluten or i get sick, others needed to be made aware of the seriousness by being told long term effects. Until i did that, my friends repeatedly said things like 'just one wont hurt', when clearly, it will. if your struggling to make them understand, you could show them this website, or go to www.celiacteens.com thats got a pretty good explanation too. My friends STILL dont really know what i can and cant eat and ive had celiac disease for 2 years now, but they are way better than before, so dont worry sweetie,your friends will get better.

    Eating out is sometimes a bit of a problem, but usually its all about planning, if you know where your going then call the places in advnce and see if they have anything to offer you. On a few occasions ive had places make specific meals for me that werent originally on the menu once i (or my parents) have explained the situation.. but thats not garunteed. At first it real is a case of trial and error, once you know the places around you that you can eat at, it'll be like clockwork, and that goes for sticking to the diet too. The more you look the more you'll find that there are a wide range of replacement products on the market, and that range is getting bigger. As my GI once sadi to me... if they can make money out of you they will.. which means more manufacturers will 'cash in' giving us more choice.

    if you need someone to talk to about all this, you can message me here, or email me / add my msn .. luckychik123@hotmail.co.uk

    keep going, it WILL be ok


  16. *Hugs* Sorry to hear your having such a hard time.. but if it helps, a lot of us feel overwhelmed at first so your not alone.

    A good thing some people find (including me at the start) is to treat your self every weekend with your favourite gluten free (and in your case soy free) food or by doing something you really enjoy, weather thats simply taking a short walk with your family or going to the sinema etc.. this gives you something to look forward to at the end of a tough week. The better or worse you feel you could make it longer or shorter until you next treat.. and dont foget to give yourself smaller treats inbetween to keep spirits up.

    As Assasin said you might be better off sticking to about 3 'safe' meals for as long as you can stand it, this will help your body heal and allow you to discover some more alternatives... vitamin supplements will help replenish your body's deminished stores and hopefully help get your energy and confidence back. I dont know if you can get them but nutren build up milkshakes and soups are really good for energy boosts and helping to replenish vitamin and mineral stores.

    Good luck, get well, and remember your never alone, we're always here if you need us and it will get better, awareness is rising and more options are becoming available for all of us


  17. *Hugs* Im sorry your having so much trouble persuading your doctor to do the testing.. they can be such a pain sometimes cant they!! Good on you for standing your ground though :)

    How long you take to recover depends on the amount of damage the coeliac has already done.. some start to feel better within a few weeks and are fit and healthy in a year.. others can take up to 2 years to get completely better.. some like me dont even get noticable sypmtoms until after diagnosis when they make a mistake..it really depends on the individual

    I agree with fox on the unsuportive doctor issue... if they wont help you then get rid of them.. they arent doing their job properly if they are letting pride (not admitting to knowing little about coeliac) get in the way of patient care

    as for the testing issue.. try to get it done if its viable but dont let it stress you out, that'll just make you sicker.. also bear in mind that you need to be eating gluten for the tests to be acurate.. so if you do start to feel better gluten free you may want to just go for the bloods and not do the biopsy.. most people do have the biopsy as its more acurate than the bloods.. (mine was negative though,, with very positive bloods about 6 times .. so my gi ended up ignoring my biopsy anyway)... if you can afford somehow to do the bloods but cant manage the biopsy, at least you will have something to work with

    good luck hun, feel free to pm me if you ever need me


  18. Hmm... that does sound ominous doesnt it... inflamation/irritation of the intestines can be an early sign of coeliac..

    The biopsy of your oesophogus was probably too high in your digestive tract to detect damage .. biopsies work best if they are taken from several places incase of patchy coeliac..

    Also coeliac can have 'dormant' phases sometimes.. so it could be that when the biopsy was taken the coeliac wasnt actually causing a lot of damage...that would also affect the bloodtests

    Bloodtests arent always 100% reliable.. and mistakes are easily made thats why a lot of physicans wont diagnose just on a positive blood test.. which can make life hard for a lot of people...

    If you want re-testing then you could always use something like entrolab if you dont want to go back to the doctor but of course you would have to go back on gluten for that

    As for being gluten free now.. its great your feeling some improvement sometimes :D .. its not unusual to still have bad days, it takes time for your body to heal itself.. and some people find that they need to remove dairy and/or soy for a short amount of time to help their body get back to normal..

    good luck :D i hope this helps a little.. and remember whatever you decide there will always be people here for you every step of the way


  19. I have no idea whom this will reach, when or how it will be reached... I am willing to read and listen to any advice about this Celiac thing. I get lost in Whole Foods, I'm tired of yogurt and grits already.... Is there a way to find a support group in my area? I'm north of Dallas, Texas. I feel like my mind is racing all the time. I don't even know how to "post" stuff on this site! All I do know is that since eliminating gluten a week ago, I feel like a million bucks. But how am I supposed to live the rest of my life without donuts? I served lasagne to my husband and kiddos tonite and I ate a baked potato. I bought books at Barnes and Noble on what to bake and cook... I'm just so overwhelmed. I don't want this to be true.

    I know I'm rambling and I'm sorry... I guess I just need a friend or two to help me sort this out... someone who has been there....

    Hey! Welcome i dont know about any support groups in your area.. you could try looking on the internet though or asking if your doctor knows about any that are near you , but i do know about doughnuts, there is a great recipe at http://www.juvela.co.uk/recipes/mini_doughnut.html just substitute the juvela mix for what ever flour mix your using.

    As for still feeling terrible, many coeliacs find that when they eliminate gluten they still feel unwell, this is because at first it is difficult to digest lactose which is a protein found in milk and dairy products. Elimnating this for a little while and then gradually re-introducing it should help you feel better.

    I hope you feel better soon, remember we are here if you need us and it does get better.


  20. I had exactly the same problem, my results were so high that they were of the scale but my biopsy was completly clear, five different pathologists looked at the samples that were taken and none of them could find any kind of damage, and i hadnt even been gluten free. My doctors re-did my bloods and eventually went on that and scrapped the biopsy.

    It is unlikely that your bloods were false, TTG is rarely raised in tests when people havent coeliac. My peadi said to me that there were a few possible reasons:

    1) The coeliac is patchy - in some people the damage doesnt occur all over, but just in smaal patches of the intestine, this is common in people were its not very advanced and hasnt been active for long. Your doctor could simply have taken the samples from one of the clear patches, and/or not taken enough smaples to get a clear picture.

    2) They didnt go far enough - they may simply not have gone deep enough with the camera, so were taking samples from the wrong place for you.

    3) The samples got mixed up - this is very rare and unlikely to be the reason.

    4) It has been inturpreted incorrectly (hence why my peadi had 5 pathologists look at mine). This seems the most likely for you, if you have blunted villi it is probably coeliac. Because you had been gluten free, the damage may have been less servere than they would expect it to be. They should take this into consideration, especially if you feel better on the gluten free diet - in which case i would reccomened you stay on it as many people consider the diet to be the best test there is. If you want a dead set diagnosis then genetic testing will give you that, even if you are gluten free.

    Good luck, stay well.