[Magician]

Hi!

As the description says I am close to a Celiac diagnosis. Even right now without one, I am finding myself trying to decipher the huge ingredient lists on different foods? I believe all junk food is now a huge no-no. No problem! I'll eat fruit instead. Then I read on this site that some fruits/veggies are coated with a thin layer of oat flour? How on earth can I survive when everything is a 'bad' food to eat?

A couple of days ago, I ate a couple of bran muffins thinking 'yummy', healthy snack. For that, I spent the past day sitting on the can with the trots and constant gas.

And that is why I ask if there is a Celiac support group.

Magic

[rinne]

I don't know about Brandon but there is one in Winnipeg, I don't have a link but if you google "Celiac support Winnipeg" it will come up. They have an information package with lots of good information in it.

I agree, you need help. Bran muffin , not a good idea.

This is a great site, lots of support. Many find a simple diet of unprocessed foods easier in the beginning but that depends on how your digestion is working. How is it working?

And welcome from another Manitoban.

[Magician]

rinne, on Jan 20 2009, 11:27 AM, said:

I don't know about Brandon but there is one in Winnipeg, I don't have a link but if you google "Celiac support Winnipeg" it will come up. They have an information package with lots of good information in it.

I agree, you need help. Bran muffin , not a good idea.

This is a great site, lots of support. Many find a simple diet of unprocessed foods easier in the beginning but that depends on how your digestion is working. How is it working?

And welcome from another Manitoban.

Hi, rinne and thank you for youir welcome. I agree bran muffins are not that good but they are considered healthy by most.

I am still snooping and snooping to figure this all out. I found a wonderful web link this morning from suite101.com which describes me to a 'T'. I have almost total night blindness which my dr. has not been able to figure out. He just says 'eat more vitamin A'. Later on along came the zinc deficiency, iron deficiency, etc. When my gluten 'issues' are sorted out will I be able to see in the dark again? I don't know many people who carry a flashlight around with them so they see where they are walking at night.

[rinne]

Magician, on Jan 21 2009, 04:14 PM, said:

Hi, rinne and thank you for youir welcome. I agree bran muffins are not that good but they are considered healthy by most.

I am still snooping and snooping to figure this all out. I found a wonderful web link this morning from suite101.com which describes me to a 'T'. I have almost total night blindness which my dr. has not been able to figure out. He just says 'eat more vitamin A'. Later on along came the zinc deficiency, iron deficiency, etc. When my gluten 'issues' are sorted out will I be able to see in the dark again? I don't know many people who carry a flashlight around with them so they see where they are walking at night.

As I recall bran muffins may be quite tasty also, if it wasn't for the bran!

Many people see improvements in not only their digestion but other symptoms too, as for the night blindness I haven't heard anyone mention it but you could always start a new thread about it.

I know I have seen improvements in my willingness to drive at night, and that seemed to improve with the B12 shots which has more to do with stress than eyes I think but even so I would have to say my eyes are better now for being gluten free. But you are carrying a flashlight at night, are we talking living in the city night time? Or out in the country?

May I ask how you were diagnosed?

[Magician]

rinne, on Jan 21 2009, 03:02 PM, said:

As I recall bran muffins may be quite tasty also, if it wasn't for the bran!

Many people see improvements in not only their digestion but other symptoms too, as for the night blindness I haven't heard anyone mention it but you could always start a new thread about it.

I know I have seen improvements in my willingness to drive at night, and that seemed to improve with the B12 shots which has more to do with stress than eyes I think but even so I would have to say my eyes are better now for being gluten free. But you are carrying a flashlight at night, are we talking living in the city night time? Or out in the country?

May I ask how you were diagnosed?

I live in the City but still find it rather hard to see in the dark. I don't have an actual diagnosis yet; waiting for the follow up with the Gastro doc in February. She said the small bowel test was normal but the gastroscopy test showed a lot of polyps. The only question she asked me was 'you have a lot of heartburn?' and did I require a prescription for '???'. She mentioned a medication but I can't remember the name of the drug for the life of me, sorry.

I take Tums for my indigestion or drink pop if it gets really painful.

It is good to heard you are feeling better gluten free. Everything I eat is processed something or other which is where my confusion begins. I am not a meat loving person and have always preferred to 'graze lightly'.

[rinne]

Magician, on Jan 21 2009, 06:30 PM, said:

I live in the City but still find it rather hard to see in the dark. I don't have an actual diagnosis yet; waiting for the follow up with the Gastro doc in February. She said the small bowel test was normal but the gastroscopy test showed a lot of polyps. The only question she asked me was 'you have a lot of heartburn?' and did I require a prescription for '???'. She mentioned a medication but I can't remember the name of the drug for the life of me, sorry.

I take Tums for my indigestion or drink pop if it gets really painful.

It is good to heard you are feeling better gluten free. Everything I eat is processed something or other which is where my confusion begins. I am not a meat loving person and have always preferred to 'graze lightly'.

My doctor gave me a prescription for something that I can't remember the name of either but I have it here somewhere, I did some research on it and discovered it stopped all absorption of B12 and given that I was critically low in B12 that just didn't make sense to me. It is probably why my doctor got rid of me, I was difficult.

Heartburn indicates a digestive system that is not working, I watch the T.V. ads for the various remedies and it strikes me that somehow this has been normalized in our society. One thing I have done which helps is to slow down my eating and chew my food very thoroughly, they say digestion begins in the mouth. I grew up in a large family and you ate fast if you wanted seconds.

I spent years as a vegetarian and can appreciate the not being a meat lover, I couldn't do it now. Have you thought about learning to cook?

[whistle]

Hi Magician and rinne!

I found this for Brandon:

http://www.celiac.mb...ndon/index.html

The site isn't very informative, but there are a couple of contacts on there. I live in Winnipeg, and am trying to figure out if I have celiac or not. Thanks for the link for celiac support in Winnipeg.

Good luck!

[rinne]

whistle, on Jan 22 2009, 03:17 AM, said:

Hi Magician and rinne!

I found this for Brandon:

http://www.celiac.mb...ndon/index.html

The site isn't very informative, but there are a couple of contacts on there. I live in Winnipeg, and am trying to figure out if I have celiac or not. Thanks for the link for celiac support in Winnipeg.

Good luck!

That was sweet of you.

So, we could be neighbours! I hope you don't have celiac, or crones, or colitis....and that you feel better soon. Good luck to you!

[Magician]

Oh, I know how to cook! Trust me. My problem is I have a very fussy partner who fusses so much the joy of cooking doesn't appeal to me that much. My mother has passed along a super heartburn remedy which is 100% natura and worksl: eat an alfalfa pill. I told the gastroentrologist about it.

[Magician]

Hi, Whistle! Thank you for the Brandon link. You are correct it is a very sparse site. Hmm, I am a web designer . . . <smiling> Best of luck to you also!

whistle, on Jan 22 2009, 02:17 AM, said:

Hi Magician and rinne!

I found this for Brandon:

http://www.celiac.mb...ndon/index.html

The site isn't very informative, but there are a couple of contacts on there. I live in Winnipeg, and am trying to figure out if I have celiac or not. Thanks for the link for celiac support in Winnipeg.

Good luck!

[whistle]

Thanks, you guys!

I have a lot of symptoms of celiac, but I couldn't get the whole blood panel, just transglutaminase, and I tested negative. My gastro appointment isnt until July 23rd, and I was told I was lucky because it usually takes a year. Did you guys have trouble with stuff like that, too? I know we have doctor shortage here in Manitoba (and a whole lot of enthusiasm for grain!) I've actually been doing something quite silly for the last few days. I'm trying to grow a rash! I lived in Toronto for 12 years, and often got a rash that really sounds like it could be dermatitis herpetiformis. Since I moved back here to my home town I don't get it much. I don't know if it was the higher humidity in T.O. or maybe that I drank way more beer (my roaring twenties! ) Anyway, I sometimes get it from band-aids, oil paint, etc. so I thought if I could cause an outbreak I could get a diagnosis that way. But I think it's just too dry and cold. It starts to appear, but I can't get it to blossom. I guess I'm nuts! Well, back to plan A, which is to go on the diet for 3 months, then do the challenge.

It's nice to meet some fellow Manitobans. Maybe someday we can do lunch!

Keep warm

[rinne]

I was scheduled for an endoscopy five months after I saw the gastro and it took forever to get to see him. He mentioned celiac that day and I came home and did the research, talked to my mother and found out that my sister has IBS and celiac. I had already been off gluten for months when I saw the gastro and so the bloodwork they did was negative. I decided that I wasn't going to damage myself in order to get a positive diagnosis.

That "gold standard" is damage and the challenge is to damage yourself sufficiently for the damage to show up to them, and even with damaging yourself there is no guarantee they will find it.

The doctor had also scheduled a CT scan in July and I went for that which I had misgivings about and I deeply regret doing. I was just over a hundred pounds at that point and very ill, I left the hospital feeling worse than I had going in even though I refused to drink the solution, I felt burned for at least four months after that test. I question the wisdom of exposing someone who is ill to the equivalency of 100 chest x-rays.

Anyways, after that experience I decided I wasn't going to trust our medical system with my health.

Perhaps if you do the gluten challenge the rash will come back.

Lunch? Now where are good places to eat in Manitoba that do gluten free? Actually I follow the SCD (Specific Carbohydrate Diet which is even more restrictive. But lunch does sound like fun.

Keep warm.

[whistle]

rinne, on Jan 22 2009, 04:35 PM, said:

Perhaps if you do the gluten challenge the rash will come back.

Keep warm.

lol rinne

Wow, that CT scan sounds brutal. Thanks for the advice. I gave up on the rash but I started a gluten-free diet 4 days ago, and I've already seen improvement in one way. For the past three years I've been taking a prescription acid reducer, in order to prevent constant acid indigestion. If I stop taking it for a couple days I get so acidic it seems to expand beyond my digestive system - like my eyes feel acidic. I stopped taking the pills 2 days before the diet, and it made me feel horrible as usual. On the first gluten-free day the acid started to subside, and for the last 2 days I've had no stomach trouble at all. This is astounding! I've had slight indigestion after eating dairy so I've cut that out as well. I guess I'm onto something!

Well, if lunch is impossible, there's always Perrier with a twist!

Hey Magician, any luck with the support group? That celiac.mb is possibly the bleakest looking site I've ever seen. Maybe you can save it! I'm a creative person, too. I'm mainly a visual artist, and I write and sing a bit.

Bon appetit!

[Magician]

I am haven't bothered checking into the support group. The very day I was to
meet the gastro doctor to get my biopsy results all the clerical staff went on strike!
I pushed my appt. back a 3 weeks thinking the strike would be over by then. Nope.

It is still on. Met with the Gastro doc Wednesday of this week, she said everything looks
good and I took her at her word but did ask for print-outs of the results for my records.

In the evening for a light bit of reading before bed I reviewed the prints and discovered the biopsies were labeled ABNORMAL. Ask me how much I freaked!

Here's another weird thing: she made me retake all the blood tests, all 17 of them. Drained me out good. And also the stool samples AGAIN.

Two of the previous blood tests came back abnormal. The first being the C Reactive Protein at 9.31 mg/L and the second being the Saccharomyeces Cerevisiae Iga at 21 EU/mL.

Monday afternoon I am scheduled for a Cat Scan of my intestines. I am not looking forward to it. With a herniated disc right in my lower back, the thought of spending 90 minutes lying on it ....

Also I see they have marked down a PAP Smear was ordered in 1992 but the really weirdness of it is that I only have my PAPs done at my dr's office. Total weirdness.

M.

PS. Stool samples are NOT fun!