Thank you so much Jai!! I will look Dr Campbell up and see if I can find a contact number for him and have my family doctor refer me - and nice and close even in ajax!
Thanks again and hope your mom continues to do well!
I live in Peterborough, ON - just east of Toronto. I am looking for a doctor to get referred to in Toronto/Kingston/Ottawa - anywhere really in eastern or central ontario. I was diagnosed a year and a half ago and just had a follow up biopsy which showed no improvement in my small intestine after a year and a half gluten free.
Does anyone know of a good GI in Ontario that I can be referred to who is really knowledgeable on celiac and/or refractory celiac.
Thanks so much for any help!!!!
I have been off work now since April as per my doctor's orders and been having many tests. My neurological symptoms would be my biggest complaint and I wonder how many other people share these and when they will get better? I have been gluten free for 1 1/2 years now, but only extremely careful for about eight months now.
I have had an MRI and cat scan (Both clean thank god!) to rule out tumors and MS because cognitive testing that I had showed problems with my memory, inability to focus and multi task and LOL I can't remember what else, but I definitely know my brain does not work the way it used to. My B 12 was very low so now receive B12 shots and my Vit D was also low so am taking those orally along with other vitamins.
I am super careful with gluten-free diet and have done everything I can to eliminate it from my diet, right down to switching pots and pans. I have got CC a couple of times from eating out, but at home all is fine.
I am still exhausted most of the time - sleeping less but still needing to sleep like 12-14 hrs a night usually with a nap in afternoon, have major tingling and numbness in both my hands and arms. In fact my hands go numb when trying to print sometimes or cooking or using the computer. My memory is a bit better, but still have difficulty with word pulling, and lose myself often mid sentence and have no idea what I am saying. Decision making is very difficult if I have to think of more than one thing at a time and I still limit my activity every day to an hour. When I do too much, I break out in a sweat and have chills/goosebumps all at the same time. My lymph nodes cause me severe pain most of the time but even more so when I am doing something more active. I did not drive for three months and am just now starting to take short trips as my doctor suggested staying off the road for a bit due to an accident I had caused by my inability to focus.
Sorry for the lengthy description - but how long being gluten free before these things will go away?
Has anyone had these symptoms never go away?
How can I tell if there is nerve damage - or is there is my MRI was clean?
Helppppppppppp I am frustrated and although I am doing better than when i first took sick leave, there is still such a long way to go..........
Any suggestions about things that have worked for others to improve these symptoms?
Wow sounds like the hotel is being accommodating - that is great!
I was just in Montreal last week and ate at a St.Huberts - an informal chicken and ribs place. The staff there was very knowledgable and I was able to get the chicken - with no sauce baked potatoe and their traditional cole slaw - all with no problems. There are St Huberts all over the place in montreal. Not sure on the grocery store - we found a great gluten free store but it was in Longueil - not downtown.
Hope you have a good conference - and safe eating!!
Thank you to everyone who replied to my call for help with such empathy and support. You guys are amazing. WOW
As of today, I have officially taken a sick leave from work leaving my return date open ended right now.
It feels very odd to give in to this as I do love my job, but I am hoping in the long run this will be time well spent. I feel very fortunate to have this opportunity and such a supportive family behind me - with only the odd pooh pooher here and there LOL
Here's to getting on top of this annoying disease and getting our lives back!!!
Thanks again to everyone!!
I was just wondering if anyone out there had any experience with using the Celiacsure Test home test. It is supposed to be 93.5% accurate. The website is www.glutenpro.com. Here is an insert they use to describe what it is testing for? I am new to this site, so maybe this topic has been discussed before and I have missed it - but I just wondered if this would be an okay test for my kids as I would like to have them tested - maybe less stressful than going to a lab for full blood work It is a product made in Mississauga ON, and costs $50.00.
Any input or opinions is much appreciated!!!
Ok - here is the information they use:
You go ahead and vent away - it is very frustrating FOR SURE!! Only people with limitations like celiac or other can really understand. Food is such a huge thing in our society and food that is provided for treats is definitely NEVER gluten free.
I am surprised to hear tho that your supervisor was not accomodating to this - in the health care field no less - now that is just pathetic!! That is just not acceptable - at the very least they should be able to get a beautiful fruit tray and keep it separate - so many places are making great gluten free things - there really is no excuse for it. I do not work in the health care field and my manager is always conscious of providing something I can eat when we have food brought in and she is even conscious of providing healthy food for all the staff as it just is the right thing to do.
I cannot send anything to the schools with any kind of nuts in it for people with nut allergies - now I get that severe nut reactions will kill ya, but wow - accomodations are made for them, they aren't asked to eat in a separate area, but us celiacs - well we gotta just suc it up lol.
Now on a positive note, the last time I was in the hospital I had complete gluten free menu - right down to the bread. Now this was in Canada, but the food was amazingly safe to eat and I had no problems with it. ;0 I was shocked.
Keep on venting - it always feels better to know you are not alone!
Hi Quincy - the only time I had bloody D and severe weight loss was when I was diagnosed with ulcerative colitis which was a year before the MC. They only did another scope cuza my sysmptoms just were not clearing up but they were different from the year before. From my understanding there is not usually blood in the stool with MC and I think MC can be either constipation or D. glad you are getting teh info you need
Here is the response from another post about MC. Hope this helps.
Not sure if the link will post, but if you google "microscopic colitis forum" it should be the first one that pops up, with the address containing "persky farms" something or other.
People on here are just amazing to provide such kind advice and support.
I have just found this site and already it has given me so much information.
Cheers to you amazing celiac support people!!
I know exactly what you mean when you say barely made it through the year. I decided to take time off when |I would look at people and not even recognize them any more my brain fog was so bad and memory loss so impacted. The stomach stuff I can manage as bad as it gets - but the neurological symptoms - they are what is doing me in.
yes I do have short term as well as long term disablity. (thank goodness)
as for the MC - this was diagnosed initially as ulcerative colitis as i was in hospital so sick with major weight loss, unable to eat very high white blood count and major blood in stool. The first set of test results from the colonoscopy came in as UC, however in a year when I still had symptoms and the medication was no longer working - my GI did an other scope and this time biopsy confirmed microscopic/collagenous colitis. He prescribed entocort for me and it works amazing. It put my MC into remission and now it only flares occasionally at which time I go back on it until it is under control again. the way I tell the difference between celiac or MC is more where my pain is - my colitis is more in the lower abdomen as it affects mainly the large intestine and my celiac causes more pain for me in my upper stomach. Also the D from MC for me is complete liquid and from gluten for me it is just very very loose. (Sorry to be descriptive and gross here) MC from what I understand usually does not have blood in the stool. Someone else sent me a link for microscopic colitis too which you should check out. My GI said it often goes hand in hand with celiac - so if you are suspicious at all you would definitely be at risk- ask your GI for a colonoscopy.
Sorry for the lengthy response, but hopefully this helps a little with the MC.
Thanks for the advice around time off work and around going dairy free - I will do this and- I am leaning closer and closer to admitting it may be time to deal with my health once adn for all and get the rest and recovery I need.
All the best~
Yes your economic point is a very good one. I feel lucky to have very good benefits at work and would only lose a small portion of my income and my job would definitely still be there upon my return. However for me it is emotional - giving up vs fighting through......
thanks so much for your advice!!
Yes I am in the same position right now also - my manager wants a note from my doc saying I am well enough to work. I am verylucky to have such a great manager - she would rather I took all the time I needed to get well as she thinks this will help more in the long run. She has seen me struggling wtih my health issues for years now - from one problem to the next!
I know exactly what you mean abouto some family members pooh poohing celiac symptoms. I have one extended family member who is exactly like that but I just don't care - his reaction was - get over it and eat more rice.........well if only it were so simple!!
I am sorry to hear you have been off work and now unable to drive. I agree also if my illness was caught earlier I may not be quite as bad off - hopefully in time this will be better.
All the best to you and thanks fo much for sharing your advice to me - I really appreciate it so much~
thanks for sharing your experience and advice Diane-in-Maine. I am sorry to hear that you have given up your job also - but it sounds like you will be better off in the long run. Maybe when you are feeling better you can find something that you can do that is similar - I know the social part of work is huge for me also. It is funny but when I hear of someone else taking time off work or quitting, I applaud that decision as it is just so important to look after your health. But for myself - hmmm don't knmow why it is such a dielemma.
thanks again and best of luck!
I just wondered if anyone out there has taken an extended period of time off work ( two or three months)in order to heal from celiac and multiple symptoms and if you did - did this help you a lot?
I am 46 and was finally diagnosed after twelve years of symptoms some requiring hospitilization and also have microsopic colitis.
I went gluten free last july after being diagnosed by positive endoscope and blood test, but have not been overly careful with CC and everything else. Since March I have been getting steadily sicker and have missed days of work here and there, but now I have been off for two weeks and am considering taking a couple of months off to allow myself time to heal. Some days I feel okay and other days I am flat out on the couch barely able to focus or function with multiple celiac related symptoms - although I still am on dairy and someone suggested I go off that also to help which I plan to do.
I feel like a wimp even considering this as I have always coped and kept going while in pain or run down. My husband, family and friends are all encouraging me to take the time but still I am reluctant. i don't want to give in.
Am I a wimp or are there others there like me?
Thank you so much for your wonderful advice and positive words. I really appreciate you taking the time to reply to my post. I will definitely try to check out other food allergies and will remember that getting incrementally better is really what I need to look for - not instant results. I will also check out the colitis info you provided.
Thanks again for sharing your epxerience and your kindness