[Trish in Canada]

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

[Terch]

[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]

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]

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]

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]

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:

Quote

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]

Trish in Canada, on Oct 8 2006, 10:32 PM, said:

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?