New And Upset After First Appointment

[EmmKat]

Hi,

My name is Emily, a 47 year old female with no real medical issues up until recently. I've been healthy and active for most of my life. I just got back from my doctors appointment

and realized I am likely going to be fighting an up-hill battle with the medical professionals here in Toronto. First I should give a little history as to the symptoms that have come up.

It's all been rather sudden; in the last 3-4 months, at least the physical symptoms, from what it seems now.

Diarrhea; the trips aren't so frequent to keep me going all the time but usually 2-3 times one after the other. Post bathroom run I'm wiped out, I feel as if someone sucked

the life out of me and I am famished. I've had severe fatigue to the point of sleeping way more than I would normally, light-headedness, especially a bit after I've had to run

to the bathroom. I'll stand up and nearly pass out. At first I thought this was all caused by a medication change but my doctor reduced me to such a low dose as to eliminate

that possibility. I didn't really think of gluten seriously until this last weekend when my husband ordered pizza. This was last saturday night. I felt ok that night, but I did have

a rumbling stomach and severe gas, which is one of those symptoms that has been around the longest along with migraines which I am still am not sure are related. The

following morning I was so tired. I got up and took a shower and started getting a severe headache. By the time I was dressed I was very agitated and ended up flipping out on

my husband. I broke some dishes and I seriously thought I was going to kill him. This is not me. This is not PMS. I've also been having battles with anxiety and depression

more than normal. So by Sunday I was so sick I could barely leave bed. Was the pizza I ate the night before making me sick? I Started to think that perhaps all of these symptoms

were related, especially after reading some of the posts on this site. The pizza didn't stay with me past noon on sunday and I felt much better afterwards, but again, I was wiped out,

sore stomach, light-headed when I stood up and a terrible headache that lasted for two days. I made the mistake of eating a cup o noodles to try and at least eat something and realized

too late that the noodles were made of wheat. The following day I was sick again. Same symptoms exactly. So on to the part with my doctor.

Yesterday I made an appointment for this afternoon. I should mention that I live in Ontario so I am under the tattered umbrella of OHIP. Ontario Provincial health Care. First of let me say that

I expected my doctor to dismiss my mention of gluten issues and celiac based on my history with her. Sadly in Canada when you get a doctor you tend to stick with them as it can take a while

to find someone new. She already new of my symptoms from an earlier visit about my meds. In short these are the things she told me:

1. OHIP does not cover testing for any gluten issues, sorry.

2. Maybe it's stress.

3. You're too old for Crohns and cancer will not cause diarrhea.

4. Do you have IBS? Isn't that for her to decide?

5. We will do a blood test and a stool test and also order a colonoscopy if it will make you feel better.

6. When explaining the stool sample procedure she told me to evacuate in an ice cream pale and fill the sample bottles from there. Ok this

one kills me. Anyone tried to fill a glass from a raging water faucet?!?

So I'm like ok, this is kind of sad but what can I do. She had an intern check my stomach and then she sent me to the nurse for blood work. The nurse suggested I go to a homeopath and forget about

tests. She thought I would have better results that way. SO here I am sitting here typing this not sure if I should cry or be angry or both. I'm not sure if some of these procedures are normal as like I've said

Ive been very healthy up and until now. I hope this isn't too much of a mess. I just needed to get this off of my chest. I have to go find a suitable ice cream bucket and gorge myself on loaves of bread to prove

a point.

Em

[psawyer]

Hi and welcome, neighbour!

OHIP will not pay for the blood tests that screen for celiac disease. I understand that 9 other provinces will, along with 3 territories.

But, if you go directly to the "gold standard" test--an endoscopy with biopsies of the small intestine wall--they will pay for that.

The blood tests were just emerging when my celiac disease was suspected 13 years ago. I had the endoscopy and a colonoscopy at the same time. The prep for the endoscopy is a subset of that for the colonoscopy, so if you are prepped for the lower end, adding a peek at the upper end is easy. Doing both is prudent because while celiac disease can cause what you are experiencing, you could have something else instead (or as well).

Stool testing for gluten intolerance is not generally accepted in the medical community.

Personally, I don't think a homeopath is the direction, but I am not a doctor--just someone who has seen and heard a lot in over a decade with celiac disease and being on this board for more than 8 years now.

The colonoscopy would be performed by a gastroenterologist. Once you have been referred, you could discuss celiac disease with him and ask about the endoscopy. Gastroenterologists are usually called GI specialists, or just GIs.

[mushroom]

Welcome to the board, EmmKat.

As you are discovering, celiac is one of life's major frustrations. Firstly, to find anyone with knowledge, secondly, to apply that knowledge, thirdly (apparently in Canada) to find insurance coverage for it. I see Peter has just responded, so I will change my post a bit.

So do you know the answers to these questions:

1. What blood tests are they doing? (presumably not celiac - can you afford these privately? or are they even offered? I know you have Biocard....)

2. What is she looking for in the colonoscopy? Ulcerative colitis, Crohn's?? As Peter says, once you are prepped for the colonoscopy, adding in the endoscopy would be a breeze and is the surest way in the hands of an experienced GI to find celiac disease. That means they must take at least 6 samples from different areas to be sure they don't miss what is usually a very patchy presentation of the disease.

3. Is the stool testing looking for gluten antibodies, or is she checking for parasites? Ideally, she would do both although, as Peter says, stool samples are not generally used or accepted by the medical profession for celiac. One collection method I have seen for stool samples is to spread a large sheet of cling wrap over the top of the toilet bowel (with appropriate droop to allow for collection) and then put the seat down on it. Try to make this a controlled BM rather than a desperate one For testing purposes it will not make any difference which it is. Beats an ice cream container, in my book

[EmmKat]

Yes, the stool samples are for parasites and e-coli etc. She didn't feel that diet/what I was eating had anything to do with my problem. The nurse commented that she couldn't draw blood from my right arm because my vein rolled over and was too small. This has never ever been an issue before, She said I was extremely dehydrated. I've been drinking nothing but water and gatorade for 4 days along with enough coffee to keep me from caffeine withdrawals. Thanx so much for the information. I'm assuming I'll get either a call or a letter from the gastro referral and Ill contact them then to try and sneak in an endo as well. I could also go the biocard method. They have a new name for it but I can't remember it offhand. It's $50 ordered online. I'm just curious if that would be a worthwhile way to go. thanx again.

Em

[mushroom]

Many posters have found the Biocard helpful. At least it would give you a guideline on whether it is worth paying for the celiac panel yourself since your province isn't interested

[Ollie's Mom]

I also live in Toronto and just wanted to say, to any American neighbours reading this, that although OHIP does have limitations, I am content with the medical services available to me and my family. The lack of coverage for celiac blood tests is one of those aggravations, but it is one I'm happy to live with given the overall pluses associated with our health care system.

EmmKat, unfortunately I am not diagnosed, so I can't give you any advice regarding a specific GI doctor who might be knowledgeable about celiac disease. But I have found some awesome restaurants and bakeries in the GTA that specialise in gluten-free items so at least if you determine that gluten is your nemesis, you have places you can go to help you feel more "normal". Pm me and I can give you a list of places.

And... I'm sure you're aware, but stay on gluten until all testing is done if you are seeking a diagnosis.

Good luck!

[psawyer]

I have found some awesome restaurants and bakeries in the GTA that specialise in gluten-free items so at least if you determine that gluten is your nemesis, you have places you can go to help you feel more "normal". Pm me and I can give you a list of places.

Sharing that here in an open post would benefit everyone in the Greater Toronto Area (GTA) and would be within the rules as long as you do not include somewhere that you own or work at. Please share.

[nvsmom]

I'm sorry that you've been so unwell.

I'm one who did the Biocard and I had a very weak positive on their ttg IgA test. That was backed up by a doctor ordered test (in Alberta... where they\ll run about half the celiac panel) so it worked for me. I know of another lady who had a positive biocard test but negative doctor ordered lab work though so it's not a perfect test by any means. I could be worth a try for you since your options are limited; perhaps the doctors "might" take your concerns more seriously with a positive test.

Have you have a hydrogen breath test for SIBO? That can cause problems similar to your too.

Good luck!

[guest134]

Just because you are over the average age of diagnosis does not mean you are immune to Crohn's but I really doubt that is it regardless so I won't go there.

You need an endoscopy for Celiac, not a Colonoscopy. In Ontario there are two tests to order, one is the Celiac panel which includes DGP IgG/IgA, Tissue Transglutaminase and total serum IgA for $125. The second test is the endomysial which costs $65. If I were you I would skip the garbage and get referred to a well versed Celiac G.I, you will get gold standard results and won't have to pay a dime.

Remember though, Endoscopies can be useless if you are getting one done by a doctor who thinks 1-2 samples is enough, if more than 4 samples are taken it is nearly 100 percent accurate.

[Gemini]

You need an endoscopy for Celiac, not a Colonoscopy. In Ontario there are two tests to order, one is the Celiac panel which includes DGP IgG/IgA, Tissue Transglutaminase and total serum IgA for $125. The second test is the endomysial which costs $65. If I were you I would skip the garbage and get referred to a well versed Celiac G.I, you will get gold standard results and won't have to pay a dime.

Remember though, Endoscopies can be useless if you are getting one done by a doctor who thinks 1-2 samples is enough, if more than 4 samples are taken it is nearly 100 percent accurate.

Gold Standard results? The biopsy is just as unreliable as the blood work. If the OP has an endo, there is absolutely no guarantee that a doctor will find Celiac, if damage is patchy. You have to be virtually villi-less for it to be a slam dunk diagnosis. You have to be willing to do a dietary trial if testing is inconclusive. Most people garner more information from that than that ridiculous gold standard...which really isn't. Not that I am suggesting that she shouldn't give it a whirl but if the endo comes back negative, most doctors will not persue it any further.

You really believe that if more than 4 samples are taken, you'll have 100% accuracy? This is why people never get diagnosed! The biopsy is a crap shoot, like the blood work, unless you are at the point where you don't have much of a small intestine left. That's 100% accuracy. I think most need to go through some level of testing but if you pop positive, you are either quite sick or very lucky. If all else fails, gene testing and dietary trials can go a long way to help figure it out. Although gene testing is not 100% either, nothing is, at least

it will let you know if you carry the main Celiac genes.

[Ollie's Mom]

Sharing that here in an open post would benefit everyone in the Greater Toronto Area (GTA) and would be within the rules as long as you do not include somewhere that you own or work at. Please share.

Sure. I don't work for or own any of these places, so we're all good I guess. :-)

Riz Restaurant - on bayview Ave just south of eglinton. Pan Asian cuisine. This is my favourite place. They really cater to those requiring gluten-free food. The plates actually say "gluten free" right on them. They even have an all you can eat gluten-free menu.

Gluten free bakeree - in Oakville on lakeshore near the credit river. The entire bakery is gluten-free!! They have tons of gluten-free and dairy free options too. They have tiramisu, cakes, pizza, breads, muffins, cupcakes,... So much great stuff!

LPK's Culinary Groove - on queen St East at broadview. Not dedicated gluten-free, but they have tons of options including things like nanimo bars, Brownies, cupcakes, cakes, oreo type cookies. Their coconut lime cake is gluten-free and to die for. I got my wedding cake from there. It was beautiful and delicious.

Charlotte's foods - in Thornhill. She makes awesome (awesome!) meat pies with a nice flaky gluten-free crust. She has a dedicated kitchen for the gluten-free foods, which also includes pies and cakes. All her food is fozen. You heat it up in your oven. She's a great lady, and will give you samples of cakes etc before you buy. She also caters to diabetics, so she has gluten-free and sugar free desserts.

I know there are more, but these are just the ones that come to mind atm. As I think of more, I'll post them.

Edited to remove big mammas bit from my list... Looks like they closed down!! :-(

[guest134]

Emmkat, have you had any progression in finding your ailment?

Also to Gemini as I just noticed this, my recommendation on the endoscopy was based on the blood tests costing money while the endoscopy is free. Along with that there are basically very few doctors in Canada who are willing to diagnose with blood work. While it would be great for her to feel improvement on a gluten free diet and stick to it she is looking for a diagnosis and my advice was simply tailored to her specific case.

Most people garner more information than the Gold Standard? LOL, ok how about I pull up any medical institutions site in which they all read "Gold Standard"... The definition of Gold Standard is "The best, most reliable, or most prestigious thing of its type." The biopsy is the best of it's type and is more reliable if done properly than any other test so as of right now it is the gold standard. No one ever said anything about gold standard meaning it is infallible but it is certainly the best we have to date. You also seem to be in the mindset that every doctor knows nothing about Celiac, too bad you didn't have mine, he was awesome and understood asymptomatic Celiac and how many biopsies were necessary in each part of the intestine. 

[1desperateladysaved]

Stool test ideas:

 

Get a 5 gallon bucket from a bakery (cleaned) and sit on that.

Or place a garbage bag between the parts of the toilet.  Under the seat and over the base.

 

Hopefully, you can get the job done that way.