Posted by navigator
on 22 February 2012 - 07:34 AM
I was diagnosed by endescopy and biopsy but I'm 54 and also in the menopause. I do have symptons which are common to both diagnosis - mainly crashing fatigue and jointpains/aches. These are so similar that the only way I can differentiate between it being menopause or coeliacs causing it is by accompanying symptons. If I also have heightened hot flushes and night sweats then I put it down to menopause being the main culprit. If I don't have an increase in these but I have problems with bowels, stomach etc then I consider possible accidental glutening. The brain fog accompanies both!On my worst days I have all the symptons and it seems that they're both in overdrive. The G.P. I was originally seeing about my symptons put it all down to menopause. When I went to the G.P. I currently see, he felt that just because I was menopausal did not mean that my symptons could not also be a result of coeliac disease and had me tested. It could very well be that you are both menopausal and coeliac. Don't let the doctors dismiss the coeliac if you're menopausal.
I guess I'm lucky as I've not experienced any difficulties with either wine, malt whisky or Glayva .
I've had my liver function done twice as I'm on statins for familial hypercholesterolemis and it's fine. Both my GP and my GI are aware that I have a glass of wine every night with my dinner and at the weekends I also have either a malt or a glayva after dinner. Both have told me that there is no reason to make any changes to my alcohol copnsumption. It appears that this is another area where people have different levels of sensitivity.
Glad that you're feeling better and took the time to say goodbye and give your reasons rather than disappearing. It's now eight and a half months since my diagnosis and I've improved significantly. I think I'm maybe about 80% there and I'm hoping that if I continue to improve the way I have been that it won't be too long before that's 100%.
I found it difficult at the start to distinguish between being glutened and having something else wrong. I've not been well this week - fatigue, hot/cold sweats and joint/muscle ache. My husband questioned if I'd been glutened as fatigue and joint aches are my classic symptons. However, eight months on I felt confident that this was some kind of a virus rather than a glutening. The hot/cold sweats and muscle ache were the give away for me. However, this is the first time when I've felt unwell and i didn't consider glutening. I think it's about getting to know your body better. That takes time and I wouldn't describe it as hypochondria.
I've found this site to be a great help and a source of advice and knowledge. However, I've still got personal responsibilty to do what I can to check out the reliabilty of this advice.
Wishing you well for the future.
My house is completely gluten free. My husband eats gluten out of the house but at home he is gluten free to ensure that there is no cross-contamination. My son-in-law does the same. It's a huge issue and will prevent healing taking place. It's a steep learning curve and a lot for you and your family to get your heads around. I found the cross-contamination issue the most difficult one to get people to really understand and take seriously but it's all about perseverance and education. Good luck!
I would find another dentist. When I was diagnosed I informed my dentist and they put it on my notes. When I went in for a check-up it was the first thing that they said to me and ensured me that they had checked their products and the gloves that they would wear whilst doing my check-up and clean. Try phoning round other dentists in your area and discussing this with them. That should give you a feel as to which one would be safe for your daughter.
Posted by navigator
on 01 December 2011 - 10:07 AM
If it was me, Katie, I'd go gluten free right now. If you have a good relationship with your GP or,rate him/her as an exceptionally good one, then I would call for an appointment tomorrow. If not, can you change to a GP who perhaps a friend or family member has recommended? The first GP I went to about my fatigue over 3 years ago was lovely and when my tests came back with a ferritin level of 4 he put me on iron and gave me sick lines. However he didn't investigate why my ferritin was so low. I went to another GP in same practice in January and was told it was 'just the menopause'. In May I was feeling worse than I did when my ferritin was 4, I went to another GP in same practice who was recommended by my daughter. Within 2 minutes of consultation he told me that he was 90% sure I had coeliac. He then looked at last 20 years of my records and told me that he felt I'd been getting misdiagnosed.
It's great that your husband is so supportive . Just remember that if you're keeping the full details of how you're feeling from him you are also not permitting him to be as supportive as he may like to be. I know that you're doing it with the best of intentions but you may be doing him a diservice. Remember you don't need to be strong and that's something that took me 54 years to learn!! If I'd learned sooner, I may not have had to give up my career and not been 54 until I started to heal!
Keep using this forum, not only for advice but somewhere to vent to people who really get what your going through and are here for you
Posted by navigator
on 17 November 2011 - 09:35 AM
I was really shocked by this thread. I've had a completely different experience. I live in Scotland and when my adult daughter was diagnosed she was advised that it would be a good idea if I was tested. Foolishly I didn't at the time as I didn't think that I had it. I know, I know - I could kick myself now. Anyway, eventually got tested and experienced absolutely no resistance to my request. My GP strongly urged that all immediate family members get tested- and that was before my results came back. I don't understand what the issue is when it's a simple blood test. It's not as if it's a complicated procedure requiring hospitalisation.
I agree with psawyer. If that's what it takes to get your Mum tested she should do it.
Posted by navigator
on 17 November 2011 - 07:48 AM
I had debillitating fatigue with joint ache three years ago - prior to coeliac diagnosis. I eventually went to G.P. when it got to the point I just wasn't functioning. My ferritin (iron) levels were done to four! I started to feel the same way last November but decided, foolishly, to wait until after Christmas holidays in case I just needed to rest. You can tell that fatigue makes me completely irrational! My iron was okay this time and GP was less than helpful. To cut a long story short, eventually went to another GP who run tests for iron, thyroid, B12, folates, diabetes, Vits A & D and coeliac. As well as being coeliac, I was also deficient in Vit D.
I would strongly advise you to get your levels checked.
And what's this about supplements not being a good idea because your a guy - I think bodybuilders take more supplements than most folk so nothing unmanly about it.
My husband's not coeliac but he eats completely gluten free in the house to protect me from cross-contamination. My son-in-law does the same with my daughter. When they're out of their homes they both eat gluten. I think that people in the household of coeliac suffers are to be praised for doing this rather being annoyed with them for using up gluten free products. The more that these products are used, the more that a supermarket finds it viable to provide these goods.
I'm in Scotland and I'm currently back on gluten for the scope and biopsy. My daughter was diagnosed two years ago and she immediately went gluten free. She had her scope 5 weeks later and doc was unhappy when she informed him of this on the day but he went ahead with the scope. Even with being gluten free, there was still alot of villi damage.
I got the blood test in May, after 9 months wheat free, and although the antibodies were low G.P. told me that due to my daughter,my symptons and that I had been wheat free for so long prior to test,that he considered me to be coeliac. I got a bone density scan and blood tests for vitamins, thyroid, folates and glucose. I didn't want to get scope as it meant 6 weeks back on gluten. He supported my decision not to do this. However, after I resigned from my work due to being summoned to disciplinary hearing as I'd been on sick leave 3 days in January and one month in June (went back to work against G.P's advice and hit rock bottom), he persuaded me that it would be in my best interest to get the scope.
My other daughter got tested after me, had not been gluten free, and tested positive. Due to the high levels of antibodies and family history she did not need to get the scope for diagnosis.
I hate being back on gluten but having agreed to have the scope did not want to risk getting a false negative. To be fair the doc at hospital asked me to try and stay on gluten for as long as possible but that if I felt I had to stop he would still do the scope.
I would keep a close watch on your children wither you have an official diagnosis or not and ask to get them blood tested.
I was only diagnosed in May so too early for my success story, although I now have good days, but I can share my daughters story with you, Twizzel.
Since my daughter was 5 years old I had taken her to doctors and emergency rooms, only to be told that I was an over-anxious mum. When my daughter was eighteen a consultant told her that she was a drama queen and that there was nothing wrong with her.
She was married in March 2009 and four days after she returned from honeymoon she was admitted to hospital. They had no idea what was wrong and ran a battery of tests every day. On the 7th day she was diagnosed as coeliac. She attempted to return to work but her health couldn't cope.
She has been strictly gluten free since then, including toiletries, make-up etc. Her husband eats gluten when he's out of the home but the home is strictly gluten free. After two years she started to show an improvement and just kept improving. I'm very pleased to tell you that she started a college course at the end of August and is healthier than she has been at any time in her life. At her worst she was bed-bound and then spent periods of time in a wheelchair.
Posted by navigator
on 16 September 2011 - 04:04 AM
I had an irrational fear of maps and anytime I was a passenger in a car and the driver handed me a map I went into a blind panic. Then after I'd been dating my now husband for a couple of months, we were invited to take part in an observational rally. I told him that I absolutely could not navigate and he would need to ask someone else. He very patiently took away my fear. We went on the rally,I navigated and we won first prize! When I joined the capri forum my husband suggested my name. It was obviously perfect for a car forum but I decided to keep it on this forum as it reminds me that fear prevents you achieving your potential.
I've found that since being gluten free that I'm hardly ever hungry and eat smaller portions than before. I imagine it's that my body is now absorbing more nutrients and so isn't looking for more food. I've struggled with my weight since childhood and now as well as not feeling hungry the weight just keeps coming off!! I'm also finding that I'm enjoying my food more than before.
Dinner tonight is venison haunch steaks from local deer farm.
I've only been diagnosed as coeliac for two months but so far I've had really good response when eating out. We're regulars at a local restaurant and the first time I went post diagnosis I told the waiting staff and asked them to check with the chef if I could have my favourite drambuie sauce. The chef came out told me that I couldn't have the sauce or my normal salad dressing but that he could make me alternatives. He then came out and checked that I liked it. I was so appreciate and all the waiting staff now automatically say that they'll check with the chef. The chef is pleased that I'm still enjoying his food and still going to his restaurant. He's even given me tips on gluten free cooking and sauces home with me.
I've also had 2 similar experiences at places where I'm not a regular customer. Went to an Italian restaurant in Glasgow and when the waiter took my order into the kitchen(in open view of tables)the chef clapped his hands and gathered kitchen staff around. Informed him that there was coeliac in and that this section of kitchen was not to be used by anyone else to prevent cross-contamination. I thanked staff profusely and told them what a difference this makes to coeliacs.
Last night I was at a Pink Floyd Tribute band gig. The venue does a meal + ticket deal which allows you in 2 hours before doors open to tickets only. We'd bought the tickets before I was diagnosed and I was anxious about it. On gig nights they don't do full menu but a set menus with a choice of 4 starters and mains and 3 desserts. I contacted the booking agency and informed them of my diagnosis. When I got there the waitress was very apologetic that there was only one starter I could have but the chef had just prepared soup for tomorrow which was gluten free, which I could have. The chef had ordered in a gluten free desert from a local baker. I asked her to thank the chef and once again he came out at the end of the meal to speak to me and gave me a recipe for gluten and dairy free muffins.
I agree with sandsurfgirl