Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Waiting Time For Specialist?


sore joints

Recommended Posts

sore joints Apprentice

Hi everyone!

I've just recently been referred to a GI. Anyone know how long it takes to get an appointment with one in Ontario. Should I expect a long wait. What about the endoscopies? Is there a long wait for those as well. Anyone from Guelph?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Well, let's just say your waiting time could be anywhere from three months to two years, depending on the GI. It would be easier and faster (even though not cheaper) to be tested by Enterolab. More reliable, too. Check it out: Open Original Shared Link

Also, OHIP won't pay for the blood tests, you have to pay for them yourself ($130.00), which I think is outrageous. They'll pay for abortions and sex-change operations, but not for necessary testing.

My guess is, that once you've had the appointment with the GI (and from what others said) it could then be another three months before you have the endoscopy.

  • 2 weeks later...
Heater Rookie

I went to university in Guelph, but I live in Canmore, Alberta now. I love that city!! Unfortunately I didn't have celiac disease then so I don't have any tips for you...

lorka150 Collaborator

hey sorejoints,

mcmaster in hamilton is great for specialists, and often, you can get in quicker there. i don't wait long for my GI appointments; i have a fantastic GI in the niagara region, here, not too far from you.

kimchi Newbie

As far as I know, the blood tests ARE covered now by OHIP. I didn't have to pay up front when my testing was done in Feb/Mar 2006, and I'm sure I would have been billed by now if they wanted payment!

Kim in Chelsea, Que (my bloodwork was done in Ont, not Quebec... I live close to Ottawa)

lorka150 Collaborator

I, too, had the bloodtests covered, but I cannot be sure whether they were covered through OHIP or my insurance. But I do know that I didn't have to submit anything to my insurance... I just did it as "I normally do". But that might have changed. OHIP changes so often!

  • 1 month later...
Suzie-GFfamily Apprentice

Hi Sore Joints,

Have you had any luck getting testing or a GI referral?

I had my blood test covered by OHIP- the technician at the MDS lab told me to go to a hospital blood clinic and it was free.

Apparently, Ontario is the only province where testing is an issue. It was mentioned at the recent national celiac association meeting in Mississauga this past May. It's something they are planning to address.

I had a GI referral in about 2 months after my pos tTG test and got a biopsy scheduled for 3 weeks after the initial consult. My children's appts have taken longer- about 4-6 months for a consult.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sore joints Apprentice
Hi Sore Joints,

Have you had any luck getting testing or a GI referral?

I had my blood test covered by OHIP- the technician at the MDS lab told me to go to a hospital blood clinic and it was free.

Apparently, Ontario is the only province where testing is an issue. It was mentioned at the recent national celiac association meeting in Mississauga this past May. It's something they are planning to address.

I had a GI referral in about 2 months after my pos tTG test and got a biopsy scheduled for 3 weeks after the initial consult. My children's appts have taken longer- about 4-6 months for a consult.

Hi Suzie,

I can't get into a GI for at least a year and my blood test was not covered by OHIP but was covered by our insurance company. I decided not to wait for the GI and was tested by Enterolab. It came back positive so I'm glad I had the testing done and didn't wait for the GI. Now I just have to decide what to do about my kids. Thanks for writing.

Alison

Guelph, ON

Suzie-GFfamily Apprentice

We're in the middle of getting the children checked out. I considered getting the Enterolab testing done too, especially since it would have been so quick, but it was also very expensive.

In the end, we decided to go the more traditional route through family doc and referral to GI's. It was quite simple getting my 2 older children tested- I got a requisition for blood work from my family physician and took the kids to the blood clinic at the local children's hospital- no charge for the blood test (this was in April and in May 2006).

Both of my 2 older kids (8 and 5 yrs) are tTG pos- the one who has a few symptoms (ie straining for bowel movts and complaints of tummy aches from time to time) had a very, very high tTG, the other child is pos too. They are being seen by a ped GI.

I also have a 10 month old baby- we suspected celiac in our family back when she was about 4 mos old, so I've never introduced any gluten into her diet and plan to keep her gluten-free, at least for now. I'm planning to get HLA typing done for the baby- I'm expecting she will have either the DQ2 or DQ8 genes, but if she doesn't than she is very unlikely to develop celiac disease.

Do any of your children have symptoms?

Suzie

RiceGuy Collaborator

Hello sore joints. I just thought I'd reply after noticing your member name. Maybe my comments will help you, or someone else.

I began having joint/muscle pains, twitching, spasms, and weakness several months ago, and only just weeks ago figured out what was causing it. There were also certain intestinal troubles which is what lead me to discover what it was, though I didn't yet know how related the two problems were. Turns out I have become sensitive to nightshades. I didn't know that the toxins in those are actually bad for everyone, except most people don't notice the effects of the typical dose. Considering things like leaky gut, I guess it's no wonder there would be a heightened sensitivity. Anyway, eliminating those foods (potatoes, tomatoes, peppers, eggplant...) is really helping day-by-day.

Here's a link on nightshades for anyone interested:

Open Original Shared Link

Hope you feel better soon.

sore joints Apprentice
We're in the middle of getting the children checked out. I considered getting the Enterolab testing done too, especially since it would have been so quick, but it was also very expensive.

In the end, we decided to go the more traditional route through family doc and referral to GI's. It was quite simple getting my 2 older children tested- I got a requisition for blood work from my family physician and took the kids to the blood clinic at the local children's hospital- no charge for the blood test (this was in April and in May 2006).

Both of my 2 older kids (8 and 5 yrs) are tTG pos- the one who has a few symptoms (ie straining for bowel movts and complaints of tummy aches from time to time) had a very, very high tTG, the other child is pos too. They are being seen by a ped GI.

I also have a 10 month old baby- we suspected celiac in our family back when she was about 4 mos old, so I've never introduced any gluten into her diet and plan to keep her gluten-free, at least for now. I'm planning to get HLA typing done for the baby- I'm expecting she will have either the DQ2 or DQ8 genes, but if she doesn't than she is very unlikely to develop celiac disease.

Do any of your children have symptoms?

Suzie

Hi Suzie,

I have a 20mth old daughter who is at the bottom of the growth chart but no other symptoms and a son who doesn't have any symptoms that I know of. Should I have them checked or for symptoms to appear?

Thanks for your letter. I'm feeling a little overwhelmed by all of this. Grieving all the foods I love but will never be able to eat again!

Take care!

Alison

Suzie-GFfamily Apprentice

Hi Alison,

It's recommended that all 1st degree relatives be checked out- so that would include your children as well as your parents and any siblings you might have. They all have a greater chance of developing celiac disease at some point in their life than the general population. People who are at higher risk should be tested whether they have symptoms or not- because some individuals have no obvious symptoms but damage could still be occurring internally. If they are negative, they should keep in mind that they could develop the disease later, even if they do not have it now.

Test results in young children may not be as reliable- so it's hard to say what the results will be with your 20 mos old- a negative result could be a true negative or a false negative.

I remember feeling very overwhelmed by everything too- the diet, my health, my children's health- it all created a lot of anxiety, especially trying to decide what to do, which tests to have, weighing the pros and cons, learning which foods are safe and which ones are not ........

I had a couple of months in the spring to get used to the idea of the new diet before I actually went gluten free at the end of June. But it still was a bit overwhelming when I started. It's been a little over 2 months now, and is getting soooooo much easier.

Hang in there- make things as easy and simple for yourself as you can during this phase- it will get easier before you know it. I even did some gluten free baking last week- gluten-free brownies (from a mix) and they tasted really good, especially with gluten-free vanilla ice cream and hot chocloate sauce drizzled over them. I made hot fudge brownie delights for my kids to eat when they got home from the first day of school.

Good luck!

  • 4 weeks later...
Terch Apprentice

Hi,

I noticed you asked this question a while ago but thought I would respond anyway. It took me 5 months to get into to see a GI guy and he booked the endoscopy a month from the date of my appt with him. I see him in next week for my results. It's been 5 weeks since the endoscopy and I just started Gluten free these last two weeks because I couldn't stand not doing someting. So far the diet hasn't helped but I have been told to hang on. And I will but this is getting so tiring and after reading all of these messages it seems that a definitive diagnosis will not be forthcoming. Anyway, I live outside of Waterloo so that's fairly close to you.

Hope this helps.

Hi Alison,

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,371
    • Most Online (within 30 mins)
      7,748

    PennyL
    Newest Member
    PennyL
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.