Looking For A Celiac Dr. Around The Toronto, ON Area

[LuBelle]

Hello all,

I am new to this forum and live in Ontario, Canada.

I have chronic Lyme disease...but have also been dx with many of the conditions typically seen w/celiac disease..osteopenia, anemia, depression, chronic fatigue, IBS, fibromyalgia, bloating and sometimes abdominal tenderness after eating certain foods.

A fellow chronic Lyme patient, found out she has celiac and suggested I look into it also..as she has greatly improved since going gluten -free...

I have been doing some research and reading on the tests etc..and want to see a G.I. specialist who really knows their stuff on celiac..It took me 13 years, until I was accurately dx with Lyme disease...I do not wish to go on anohter merry-go-round ride of many Dr.'s to determine whether I am either gluten sensitive or have celiac disease...

Can anyone recommend a Dr. in or around the Toronto area?

and...Does anyone have an experience seeing Dr. Ralph Warren who use to be on the board of the Candian Celiac Association??

Many thanks!!

LuBelle

[Reba32]

I don't personally know of any Celiac specific GIs in the GTA, (I was living in the US when I was diagnosed) but your best bet is to contact the CCA or the Toronto chapter info@torontoceliac.org and then ask your GP for a referral.

I do know that the tests are NOT covered by OHIP, and the wait is crazy long, a friend of mine waited 4 or 5 months for an appointment, which by that time it was moot because her eejit GP already had her on a gluten free diet! (her doctor did not know that she had to be eating gluten in order to be properly diagnosed by biopsy and blood test!) I think the biopsy costs $100 here. Which is absolutely f*@%ing crazy AFAIC because the province could save themselves sooooooooo much money by properly diagnosing Celiac disease rather than continuing to misdiagnose it as IBS and treat its symptoms and just make people sicker.

[ElseB]

The biopsy is covered by OHIP, the blood test is not. Unless you have it done at a hospital lab. My GI works out of Toronto General, and I had the blood test done at the hospital lab, so I didn't have to pay for the blood test. I won't recommend my GI though - great at diagnosing, but horrible at explaining things.

[adab8ca]

Hi

I am from Burlington Ontario...My celiac was diagnosed by accident by a neurologist who, even after seeing the SKY HIGH antibodies I had insisted it wasn't celiac. Unfortunately, as far as I can tell, in Canada we do not seem to have these Celiac hospitals or centers that I see in the US. The GI I saw basically said " yeah, you have Celiac. See a dietician" and rushed me out the door.

My GP does not have a TON of experience with celiac but she did the right things (i had a bone density scan, vitamins checked etc, checked my total IgA) and last summer, even with Vit D supplementation, my Vit D levels were dropping hugely. However, they are coming back nicely.

Can you ask your Dr. for the tests? There are celiac panels. If this comes back positive, you can get a biopsy that OHIP will pay for (blood testing they don't for some reason. Like this is elective blood work...sheesh). Also ask for Iron, B12, full blood panel. My iron, Vit D and B12 were all very low "normal".

Then I would suggest giving the gluten-free diet a try, regarless of results. A really good try, like 6 months. In this instance, a dietician may be your best bet. I dealt with one here in Burlington that has a brother that has celiac and she herself does not eat gluten, so she had lots of tips etc...

Good luck! I hope you get some answers soon. Unfortunately, you may need to take the bull by the horns with your doctor and get some testing done.

(interestingly, when I had all these low normal levels in my blood work, the dietician looked at my bloodwork and said I was the worst celiac she had ever seen. i LOOKED anemic and sick...Dr's missed it for the most part and only paid attention when my TTG antibodies were off the charts)

Ada

[adab8ca]

Which is absolutely f*@%ing crazy AFAIC because the province could save themselves sooooooooo much money by properly diagnosing Celiac disease rather than continuing to misdiagnose it as IBS and treat its symptoms and just make people sicker.

[ElseB]

The GI I saw basically said " yeah, you have Celiac. See a dietician" and rushed me out the door.

I got "you have celiac, look it up on the internet!" Then she sent me to a dietician who kept suggesting foods that contain gluten!

[adab8ca]

I got "you have celiac, look it up on the internet!" Then she sent me to a dietician who kept suggesting foods that contain gluten!

In a standard sense, the basics are pretty simple...I cannot imagine a dietician or Dr that can't even give you the basics (ie fruit! vegetables! meat!). The newbies can't possibly know this but I bet most people HERE could give better food advice than we are getting from professionals. I think they need to get away from REPLACEMENTS for the foods and start simple...

***gently steps off of soapbox and apologizes for hijacking thread***

[chrissygirlca]

okay my doctor used to tell me it was just stress or that i had a virus. He only made me do the endoscopy after i forced him too. He even went as far as to tell me that there is a condition for people who always think there are things wrong with them. For years ive been complaining about stomach problems pains anxiety depression headaches dizziness no energy. Now im sensetive to 1049745974945 foods because of it. I was also told that nutritionist in toronto well vaughan(gta) where i am are only availble for people with diabetes. So im supper skinny self concious about my weight can eat almost nothing not sure what to eat and my only option is to pay some nutritionist 200 for the first visit and 100 for each visit after that or some crazy amount like that in order to get the care i need to be healthy. How do i even know this naturo path or nutritionist is going to help me when doctors have been feeding me bs all my life. Id rather pay money buy the text books they read and learn everything myself. Im scared of taking supplements even because i dont know if the ingredients are going to make me sick. I just wanna feel better and have my life back. So much for free health care.

[chrissygirlca]

In a standard sense, the basics are pretty simple...I cannot imagine a dietician or Dr that can't even give you the basics (ie fruit! vegetables! meat!). The newbies can't possibly know this but I bet most people HERE could give better food advice than we are getting from professionals. I think they need to get away from REPLACEMENTS for the foods and start simple...

***gently steps off of soapbox and apologizes for hijacking thread***

i agree this site came up with every search i would find and now i just type celiac before each search and it usually brings this up or i search in the form i get more information out of reading than my doctor would give me. My stomach doctor after he diagnosed me and i told him i cant even eat gravy or sauce anymore he told me it doesn't have wheat. When i asked my family doctor if i really should be changing my pots and pans he said i should not be too concerned about that but here i read i should be! You people save my life i dont know what i would do without this site id be like 20lbs without you people.

[Reba32]

The biopsy is covered by OHIP, the blood test is not. Unless you have it done at a hospital lab. My GI works out of Toronto General, and I had the blood test done at the hospital lab, so I didn't have to pay for the blood test. I won't recommend my GI though - great at diagnosing, but horrible at explaining things.

Well then how come everyone I've spoken to recently (like in the past few months) has told me that they can't get the biopsy because they don't have the money to pay for it, and OHIP doesn't cover? Plus, from what I was told by one friend, only one blood test was covered by OHIP, the other is not covered.

A lot of conflicting info out there apparently! I am glad now that I got my dx down in the States, and although I did have to pay for it, my insurance paid 80% of the cost of all tests. The GI doc was a git though, arrogant so-and-so!

I haven't heard much good about the nutritionists/dietitians in this province either that people have been going to or been sent to by their GPs. (or in the US either, it's no better there I assure you!). Even "nutritionists" who claim to be on a gluten free diet themselves have told friends/acquaintances that some forms of wheat are ok, like spelt or duram. I tell them to run as fast as they can away from that "nutritionist" before they kill them with their diet suggestions! Seriously, one nutritionist told my friend that barley and rye were ok in moderation! ugh...gotta wonder what school that one went to.

[Reba32]

in case anyone in Ontario has missed this group on Facebook

Open Original Shared Link

If any politicians come to your door asking for their vote, ask them why Celiac testing is not covered by OHIP