Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

In Need Of A Good Doctor In Toronto Area...

Trish in Canada

By Trish in Canada
in Doctors

Recommended Posts

Trish in Canada Apprentice
Trish in Canada
Posted

O.K. I just finished reading Celiac Disease A Hidden Epidemic, By: Peter H.R. Green M.D. I am a self-diagnosed with Dermatitus Herpetiformis. I had a rash for 7 months that did not go away until I stopped eating gluten. I do get celiac disease symptoms when I eat gluten as well. My doctor agreed that it was a good idea to stay off of gluten, but he is treating it as an allergy. My family thinks of it as an allergy as well. I know it is not an allergy, I've tried explaining it to my family, but some of them just sort of roll their eyes. I am concerned for other people in my family because in the book I read it says that 10% of family members will have it as well. My grandmother and her sister both suffered with indigestion problems. My grandmother had stomach or intestinal cancer and was cured of the cancer. But she never left the hospital because she would not eat because she would get sick and lose control of her bowel. The doctors said it was physcological. But I think it was celiac disease. She died of "wasting disease" and so did her sister.

I am concerned because it seems like my grandmother and great aunt may have had "silent celiac" disease that manifested when they were older.

I went to my doctor on tuesday. I told him that I wanted to have a skin test for DH because I wanted to know if I was positive for celiac because I read that it's genetic and I wanted to know so if I had it I could convince my family to get tested. I showed him the book. He said "Oh! It's one of those books!" and rolled his eyes.

So I back-tracked, because I was embarrassed. And I said "I guess I am just being paranoid, or something?" So I left the office red-faced.

I know I can't eat gluten. I get a reaction.

I am just concerned about other family members at this point. I don't want them to get sick. The only way I could convince them to get tested is if I get a little piece of paper that says "Trish is a celiac"

So please help me find a doctor that will actually do the test. I have been off of gluten since may, with a couple of glutenings since then. Since I have DH I can still get a skin test and have it test positive. I don't want to wait much longer because I will have to do the gluten challenge, I am scared of doing that.

I need help finding a knowledgable doctor in the toronto area, and one that will refer me to a good dermatologist.

Thanx

Trish in Canada

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

Celiac.com Sponsor (A8-M):


Terch Apprentice
Terch
Posted

[Hi Trish,

I don't know the name of any good doctors anywhere in Ontario. I did just have an endoscopy and I am still waiting for the results. I don't know what Toronto is like but Waterloo is horrid to try and find one. I would ask your family doctor to refer you to a GI guy and it may take a long time, I waited for 5 months to get in to see one. The other thing you might do is go to walk in clinic and see if you can't get them to refer you from there to both a GI and a dermatologist. I would definitely do something as it sounds to me that you have it for sure and very likely your grandparent.

Terch

lorka150 Collaborator
lorka150
Posted

I have an excellent, highly recommended GI in Niagara. He's an "everyone loves him" doc. I also see a great internist. If you're willing to travel, I can give you the info. I've never waited long to see him.

Trish in Canada Apprentice
Trish in Canada
Posted
  • Author

Thank you for replying. I might consider trying the walk-in doctor route for a refferal. I don't think I can travel as far as niagara (I don't drive). I am looking for someone to do a skin test first. If it came back negative I think I would have to do the gluten challenge (ick) before I saw a GI. I think since I have mainly DH symptoms and not always the bowel symptoms it would be harder to get a positive result on the GI tests?

I emailed the Toronto chapter for celiacs today with my story and asked if they could refer me to a good doctor and dermatologist. Hopefully I can find a doctor this way.

When I went to my eye doctor in August he asked if I had any allergies, I said I was possibly gluten intolerant. He asked if i ever heard of celiac disease I said yes. I told him I hadn't been tested, but that I was going to my doctor to ask to be tested. He said that was a good idea. Maybe I should call him up? He might have connections to someone who specializes in celiac. I think someone else on this board said their eye doctor notifed them about celiac disease, maybe it's a part of othamologist training?

lorka150 Collaborator
lorka150
Posted

eye doctors are extremely aware of autoimmune disorders because they are one of the head doctors in MS diagnosis.

feel free to let me know if you do need the name. also, just so you know, if you're getting a skin prick test, all of my doctors (including the allergists) have told me over and over they are only 50% effective for foods/similar and 95% for environmental.

good luck! :) i hope you find your answers.

Trish in Canada Apprentice
Trish in Canada
Posted
  • Author

I would not be getting a skin prick test. That would be for allergies. It would not help in diagnosing gluten intolerance or DH.

If I got a test it would be getting a skin biopsy to test for granular IgA deposits using immunoflouresence for dermatitus herpetiformis. If I test positive it would automatically mean that I would be a celiac. I would not have to go through any other tests for celiac (bowel biopsy).

When I was twelve years old (i'm now 25) I was tested for allergies because I was getting severe migraines. They did the skin prick test and follow-up blood work and I had no allergies at that time. The migraines disappeared as mysteriously as they began.

Lorka150:

eye doctors are extremely aware of autoimmune disorders because they are one of the head doctors in MS diagnosis.

That's interesting. That would explain why my eye doctor would know about celiac.

It's sad that opthamologist's would be more informed about celiac than a family doctor. I wish my family doctor was as informed as my opthamoligist.

jesscarmel Enthusiast
jesscarmel
Posted
I would not be getting a skin prick test. That would be for allergies. It would not help in diagnosing gluten intolerance or DH.

If I got a test it would be getting a skin biopsy to test for granular IgA deposits using immunoflouresence for dermatitus herpetiformis. If I test positive it would automatically mean that I would be a celiac. I would not have to go through any other tests for celiac (bowel biopsy).

When I was twelve years old (i'm now 25) I was tested for allergies because I was getting severe migraines. They did the skin prick test and follow-up blood work and I had no allergies at that time. The migraines disappeared as mysteriously as they began.

Lorka150:

That's interesting. That would explain why my eye doctor would know about celiac.

It's sad that opthamologist's would be more informed about celiac than a family doctor. I wish my family doctor was as informed as my opthamoligist.

are you looking for a gastro dr in toronto?

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,200
    • Most Online (within 30 mins)
      7,748
    Elisa Stutsman
    Newest Member
    Elisa Stutsman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Redanafs
      Diagnosis and further testing Celiac

      By Redanafs · Posted

      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Waiting Gastroenterology review

      By Fayeb23 · Posted

      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...