Welcome, Guest
You have to register before you can post on our site.

Username
  

Password
  





Search Forums

(Advanced Search)

Forum Statistics
» Members: 1
» Latest member: Celiaco
» Forum threads: 13
» Forum posts: 13

Full Statistics

Online Users
There is currently 1 user online
» 0 Member(s) | 1 Guest(s)

Latest Threads
Dr Johnson - Im sorry
Forum: Ride of 2010-2015
Last Post: Celiaco
02-12-2021, 07:37 PM
» Replies: 0
» Views: 54
Halloween 2010
Forum: Ride of 2010-2015
Last Post: Celiaco
02-12-2021, 04:51 PM
» Replies: 0
» Views: 43
Early Years - Bill growin...
Forum: Pre 2010
Last Post: Celiaco
02-12-2021, 04:38 PM
» Replies: 0
» Views: 35
Life Expectancy - Harvard...
Forum: What is Celiac Disease (CD)?
Last Post: Celiaco
02-12-2021, 03:56 PM
» Replies: 0
» Views: 42
Lets elaberate...
Forum: What started this idea?
Last Post: Celiaco
12-01-2020, 10:39 PM
» Replies: 0
» Views: 185
Microwaves - Easy contami...
Forum: Tips with information
Last Post: Celiaco
11-22-2020, 04:21 PM
» Replies: 0
» Views: 88
Finding Safe Dining
Forum: Tips with information
Last Post: Celiaco
02-03-2020, 10:12 PM
» Replies: 0
» Views: 98
Living in a gluten home
Forum: Tips with information
Last Post: Celiaco
02-03-2020, 09:44 PM
» Replies: 0
» Views: 101
5 second Rule
Forum: Tips with information
Last Post: Celiaco
02-03-2020, 09:21 PM
» Replies: 0
» Views: 104
Facebook Group - Living G...
Forum: Tips with information
Last Post: Celiaco
02-02-2020, 11:30 PM
» Replies: 0
» Views: 176

 
  Dr Johnson - Im sorry
Posted by: Celiaco - 02-12-2021, 07:37 PM - Forum: Ride of 2010-2015 - No Replies

Imagine your in so much pain that you cant do a damn thing.  Even rolling hurt like hell.  My pains and complications warranted scoping before seeing the doctor first.  I was not impressed.   This was when I discovered that the drugs they give really impacts the mental health.  I got so mad at them that i actually fought the scope.   I was so much in pain that i didn't understand why scans couldn't see it.  But after she went in with me heavily sedated; they discovered it was really bad.   My blood work never ever showed the disease but under a microscope it was very bad.  My villi had flattened.  There was no villi.  They call this Total Atrophy.

My attitude was wtf are you doing to me?  Ive had scans and you still have no idea?  It made no sense.   Even my pelvis was glowing like a Christmas tree in the scans but they had no idea.  Blood work was showing the signs of inflammation but all immune tests didn't show anything to do with Celiac Disease.  I was one of those very few that just doesn't show on paper as they should.  The only way was biopsy and this doctor was getting them without even saying hello.

Imagine, this doctor is going to be sticking a camera up your ass and also down your throat.  Well I grabbed that scope and i tugged on it.  I even demanded supervisors and chiefs of medicine.  This is what fear and sleepy medicine does.   I do apologize doc.  In the end i did get a new doctor all together; one that specialized in CD.  And she has been with me the whole time now.   Also is amazing; Thank you Dr Amy Morse.

Print this item

  Halloween 2010
Posted by: Celiaco - 02-12-2021, 04:51 PM - Forum: Ride of 2010-2015 - No Replies

I loved Halloween.   Prob because I got left overs from the kids that didn't show up.  It also was a night for a few beers.

Man do I miss beer.  Gluten Free beer is not the same.  It honestly isn't.  Its gross.  Lucky i have drugs I take which prevents alcohol.

Nov 1, 2010 I ended up in the ER.  Severe chest pain.   After taking this drink, the heartburn went away.   I went home and slept.   But it didn't get rid of it.  I was now on heartburn meds.  And these drugs take months to work sometimes.   I also started to get some very strong abdominal pains that went into my back also.  These pains would be a normal thing for the next 10 years.

I remember that night very well.  Because I was so sweaty it was assumed I was in cardiac arrest.  Imagine every time you go in, your symptoms match that of a heart attack.  No wonder I got the PTSD eventually.  Every visit was frightening AF! 

Then 2011 rolls around and the pains just wont go way.   Even my GP isnt sure.  He has to order gastro.  He pre ordered a bunch of tests for again to be told pancreatitis.  This time it was going further with CT Scans.   While I waited for GI, I was officially disabled.

All movements sucked.   It wasn't till I discovered the power of THC/CBD that i was able to somewhat function again with pain suppressed thanks to a friend.

Print this item

  Early Years - Bill growing up
Posted by: Celiaco - 02-12-2021, 04:38 PM - Forum: Pre 2010 - No Replies

I was a very quiet kid and as I grew older I also developed an attitude.  I don't think its bad but i do notice that the way I am wired, really impacts how this disease effects every day life.  I think my quietness with private things really stopped me from speaking up when I was dealing with this disease.  Like imagine your friends and co-workers eating gluten foods over your space and your trying to make them realize that its not welcome.

Anyways I got of topic there with how I wanted to start this thread.  Gluten free really sux as the foods you liked you can never have again.

Growing up I ate a rich grain diet.  All these grains we have today; didn't exist then.  I ate wheat, rye and barley.  I always had problems with diarrhea and constipation but it came with illness.  Constipation was a norm as i got into my high-school years.  I even had what was called pencil poop; which is exactly as it is written...it is thin and you never feel empty.  But this was my norm I thought and doctors didn't see anything in the blood to make them think "check him out".  They would offer a drinking solution over the counter and it was that quick to clean it out.  I did complain of weight gain problems as my diet was high calorie and I just burned it off.  Today I struggle with getting the proper calories as the gluten free diet plus type II diabetes (Pre) your limited to carb intake.  As I  increased fat, cardio went off so its literally a no win situation.

My high cereal (Vector), pasta, candy, slur-pies, whole-wheat, flour rich diet brought me eventually to my knees.  If only the time when my pancreas did go off when I was 16, would they have said "you know what, in 20 years we will know that constipation and pancreatitis is another way for Celiac to show so you should start a GF diet now";  would have been very interesting I think.  But would have been harder to eat as it wasn't until 2015 when GF was getting ramped up.  When you look back over your life you realize the signs was there.   Its just today they know now those signs are the early warning signs and you can make a difference in prognosis if dealt with then and not later.

As I grew older I lived with the pencil poop; I started to gain weight so I thought that my new lifestyle after coming out relieved a lot of stress which was preventing the weight gain.  I know this today with my sessions with Cory.  I peaked at 205 lbs before my ER visit in 2010.  I didn't think from that point it would be downhill after getting severe heartburn treated so I could get the sleep.


I also as a child use to go yellow.   They always thought that it was being jaundiced.   Today if your born jaundiced, they screen you.   Periodically my liver would go off and it wasn't till recently it finally wasn't high enough to even test. 

I do think if that doctor would have acted when I was 16, things would be different.  But I cant dwell on the past; its out of my control right?  Cool

Print this item

Thumbs Up Life Expectancy - Harvard Medical
Posted by: Celiaco - 02-12-2021, 03:56 PM - Forum: What is Celiac Disease (CD)? - No Replies

One of the interesting things is I always thought removing it from your diet was as simple as 1-2-3.  But its not.   This article from Harvard "Can celiac disease affect life expectancy?"  is very interesting because it truly is more than just the small intestine and removing the protein.  This disease can effect any organ which explains the chest pains still experienced today.  Depression/Anxiety also are a huge contribution to this and without Cory; I think it would be a lot worse as he has taught me a lot with toning the acceptable anxiety; by allowing other forms to go through you without effecting your mental health but accepting the forms that we should experience with relief in forms of crying, laughter(if i can manage it - i get bad hickups), or some form of showing emotion without violence.

As long as my damn dysphagia stays away and is minimal like it has been, I think I will have it made.  I see Dr Morse soon and my hope is the uphill path i have been on will continue; so I can get back to work and to my co-workers.

Content of article:

https://www.health.harvard.edu/blog/can-...0052819930
by Maureen Leonard, MD, MMSc

"Celiac disease (CD), triggered by the ingestion of gluten, occurs in people genetically predisposed to develop the chronic autoimmune condition.
During the past few decades, doctors have learned much about how the disease develops, including genetic and other risk factors. However, results from studies on whether people with CD have an increased risk of premature death linked to the condition have been mixed. A recent study shows a small but statistically significant increased mortality rate.

Celiac disease can affect the entire body

Until recently, CD was considered a mainly pediatric gastrointestinal disorder, associated with symptoms of abdominal pain, diarrhea, constipation, and bloating, and characterized by damage to the villi of the small intestine. (Villi are tiny, fingerlike projections lining the small intestine that help the body absorb nutrients.)

With the development of accurate blood tests and large-scale screenings, we have identified CD as a truly systemic disorder that can develop at any age and affect nearly any tissue or organ in the body. People with CD may experience joint pain, osteopenia or osteoporosis, bone fracture, rash, and psychiatric symptoms such as anxiety and depression.

The environmental trigger for CD — gluten — is known. When we remove gluten (a protein found in wheat, rye, and barley) from the diet of people with CD, they usually experience an improvement or resolution of symptoms. Their blood tests return to normal and their small intestine heals.

Celiac disease may affect life expectancy

Studies evaluating CD and mortality have had conflicting results, with some studies showing up to a twofold increase in mortality, and others showing no increased risk. In addition, we have not yet identified how CD may alter life expectancy. Some think that it might be partly related to chronic inflammation, leading to the development of osteopenia and bone fractures, complications from associated conditions such as type 1 diabetes, or rarely, the development of intestinal lymphoma (a type of cancer).

A recent study published in JAMA found a small but significant increased risk of mortality in people with CD. Interestingly, people with CD were at an increased risk of death in all age groups studied, but mortality was greater in those diagnosed between the ages of 18 and 39. Researchers found that the risk of death was increased in the first year after diagnosis, but this persisted even 10 years later. The increase in mortality in patients with CD was related to cardiovascular disease, cancer, respiratory disease, and other unspecified causes.

Dietary changes and routine medical care may help reduce risks

The slight increase in mortality risk does not suggest that we need to manage CD differently. However, these findings do highlight areas for patients and physicians to focus on in an effort to possibly reduce these risks.

For example, research suggests that inadequate intake of whole grains, along with insufficient fiber intake, is a leading cause of disease and death worldwide. Specifically, lower intake of whole grains is associated with increased risk of cardiovascular disease. Given the limitations of a gluten-free diet, it is possible that people with CD eat fewer whole grains than those on an unrestricted diet. Thus, individuals with CD should consume a diet rich in whole grains that do not contain gluten, such as oats, quinoa, and amaranth.

In addition, patients with CD were found to have an increased risk of death related to respiratory disease. As part of routine care after diagnosis, patients should speak with their doctor about pneumococcal vaccines, which can reduce the risk of some respiratory infections. This is not yet common in most healthcare practices, so ask your doctor about this if he or she does not bring it up.

Chronic inflammation is likely a factor in the association of CD with increased mortality. With this in mind, physicians should consider a repeat intestinal biopsy to look for ongoing inflammation, even though this study did not find an increased risk of death in people whose intestine did not heal on a gluten-free diet.

After the intestine has healed, patients should visit their physician and dietitian yearly to review their gluten-free diet, undergo evaluation for other possible autoimmune conditions, and to discuss the need for vitamin supplementation. Routine follow-up care, pneumococcal vaccination, and a diet rich in whole grains, fiber, fruits, and vegetables should also help."


Maureen Leonard, MD, MMSc

Print this item

  Lets elaberate...
Posted by: Celiaco - 12-01-2020, 10:39 PM - Forum: What started this idea? - No Replies

You have to understand that Celiac disease is hereditary.  Mom passing last year still makes me think if this was silent for her.  Was she actually harming herself eating gluten while being possibly 'Silent Celiac'?  I am really curious about this idea.  For me it woke up one day and when it did I was very sick.  Mom was 60...and she went down hill very quick.  I was somewhat like this when it all started but i rebounded with the help of a Naturopath here in Edmonton.  She is absolutely amazing.  Wish i could still see her, but i don't really have something right at the moment for her to correct.  Dysphagia, is interesting on its own; makes eating a real bitch!!!  And this is nerves/muscles which needs surgical correction.  Damn COVID!  Being on leave with COVID is like a sentence...and winter makes it even harder as all the activity in the yard is put on winter hold.

The idea that genes, the environment such as the poisons added to our foods; could very well be a trigger for this if you have the markers like my mom and I.  HLA-DQ8 (me), HLADQ2.5+DQ8(mom); which is interesting as it is one of the main causes for type 1 diabetes which neither of us screened for on 23andme.  We both are type II (23andme) which I am slowly creeping on.  But I have found foods that seem to work.  I just have to watch carbs and fat.  More on that too come..

Print this item

Shocked Microwaves - Easy contamination
Posted by: Celiaco - 11-22-2020, 04:21 PM - Forum: Tips with information - No Replies

Microwaves;an invention that has made our re-heating and left overs a thing.  But as we heat, food can pop causing a smear of mess in the oven which can also in the future, fall on new food dishes re-heated.  This is a single source to contamination at the workplace as 100 employees on a daily basis re-heat there food.

How to make a microwave gluten free?

Buy and use a splash guard to protect your meal.  Clean the tray underneath before every re-heat.
My technology involves using paper towel also underneath my food to add an additional protective layer.

   

Print this item

Information Finding Safe Dining
Posted by: Celiaco - 02-03-2020, 10:12 PM - Forum: Tips with information - No Replies

Dining today gluten free is a lot easier than it was 20-30 years ago.  More easy these last 5 as the gluten trend ramps up. All sorts of places that can be eaten at ranging from vegan to your every day restaurant.  But which is safe.  What does one ask and what does one do when attitude is received?  Remember some people don’t understand and you also need to take this into consideration.  Take it from an expert at getting pissy with serving staff.  But it’s not necessary and the option is to not eat there also and of course there are now social platforms where one can easily give a place a bad review which could hurt an establishment especially if they should be catering to allergens per there franchise rules.

Today I look for the term “gluten free”.  This term must exist in the menu or the serving staff is very aware and points out what you can have with modification.  Any deviation of the term is a distraction for there incompetence and inability to educate.  It’s that simple.  If a cook can’t use a new frying pan or a dedicated one, then the kitchen isn’t safe.  Making excuses about condiment stations, cutting boards is an excuse for laziness.  Not hard to clean your area.  But anyways these leads me to terms I have found in menus that somewhat dictates this:

1. Gluten Friendly
2. Gluten aware

When you see these term be prepared to eat someplace else.  However some aren’t all bad.  Ask questions cause one item at one location might not be at another.  Al depends on the preparation.

Print this item

Information Living in a gluten home
Posted by: Celiaco - 02-03-2020, 09:44 PM - Forum: Tips with information - No Replies

Being gluten free doesn’t mean everyone has to be gluten free.  However like any home there has to be compromise, trust, respect, and honesty.  If you can’t respect each other’s space there will not be any hope of getting better.  You should then be considering moving out if respect can’t be achieved with celiac disease.  I have read horror stories of husbands/wives and friends actually testing the disease out by making someone sick purposely.  It’s these types of people that have to be cut out.  It’s not a disease to play or toy with.

So how does a family or couple beat this but still allowing some things in the home.  Compromise is the only way here.

1.  Flour products that leave flour residue that are not gluten free are no longer allowed.  This powdery substance gets airborne when certain dishes are made and is hard to get a kitchen gluten free once it has established it’s footprint.  Everything needs to be cleaned.  Not a good idea in a gluten free shared kitchen.  Purchase gluten free flours for any baking.  Makes great gravey.

2.  Establish a corner or have a breakfast nook for yourself.  Your toaster goes here.  Utensils, cutting boards, dish cloths, drying towels, pots, pans, or any tool you use should be kept here.  Only your gluten free products will ever touch them.

3.  Get a splash lid for gluten and gluten free for the microwave.

4.  Gluten free products top shelfs in the pantry, cupboards, or fridge.

5.  Shared zones like fridges, freezers, cupboards, and counters should be cleaned regularly.  As time goes on you won’t have to clean as you’re shared zones tend to become gluten free as there are many products now available that are gluten free and are still decent tasting for others that are not.  Replace as many products as you can without impacting your families health.  Remember your diet requires vitamin supplements.  Don’t put your family through it.

6.  Your chair is yours.  This way it keeps your placemat if one exists clean of crumbs.  Remember a shared table is a bad zone.  By keeping to your end and others staying to the other chairs around the table, keeps your spot gluten free.

7. The kitchen sink. Wash your dishes separately that go in your space. Wash this zone all the time. Best to just wash after every wash cycle gluten or gluten free. Have your own towel and dish cloth.

Print this item

Wink 5 second Rule
Posted by: Celiaco - 02-03-2020, 09:21 PM - Forum: Tips with information - No Replies

Remember as a kid when every other chip sometimes just didn’t make it to the mouth or you dropped your meatball on the table and decided it’s clean I’ll still eat it?  

This is a classic example of easy contamination.  A habit that I once practiced and actually was a source of why I didn’t heal.  When a home still allows certain things and in the beginning I admit we were not careful, the smallest speck or crumb from the toaster was enough to make a surface no longer gluten free.  A crumb dropped on the table where I normally sit and if I somehow manage to get that to the mouth, wam!  Transfer occurs and it’s that easy.  Sick from days to months all from something you didn’t know was there.  It’s avoidable and here are some tips:

Don’t practice the rule unless you are certain your space is your space.

If it doesn’t make it to your mouth, toss it!

If your hands aren’t clean don’t eat!  Wash them!  Make it a habit to keep your hands clean when you go out and as soon as your home.

If you still allow gluten products for others in your home, have dedicated equipment and a corner.  The end of the table should also be your spot.

Print this item

Thumbs Down Facebook Group - Living Gluten Free in Canada
Posted by: Celiaco - 02-02-2020, 11:30 PM - Forum: Tips with information - No Replies

Angry This Facebook group is literally a joke.   Day after day all I read was people upset they just got diagnosed and hunting for eats at the same old places that probably helped get them here.  When I got sick several years ago I immediately stopped eating out and I still today rarely do.  I have to drill the cooks and kitchen staff before I even will order.  This was one of the first things I noticed.  

The other is some really push non certified gluten free labeling.  Yes in Canada we should be protected but I have personally had a face to face battle with Cheerios and Chex both brands of General Mills.  Chex hasn’t been caught but I have got sick from the chocolate brand.  Even the blueberry made my stomach hurt.  Blueberry I just stopped on my own.  But the chocolate wasn’t the same.  Till one day I managed to pick the right square and my Nima sensor told me not to eat it.   Since then my only gluten source I think is tobacco.  That’s a different story.

I read a thread praising gluten free fries at McDonald’s.  All sorts of sugary deserts that will make anyone a diabetic.  All the posted ingredients had a lot more names I couldn’t pronounce and they are asking is this safe!  And the thread about Cheerios was a joke.    It’s not a safe suggestion group period!

Seriously McDonald’s fries ? are not safe!  
Chex is not safe.
Cheerios is definitely not safe.

We are what we eat though and maybe this also should tell us something.  We got celiac for a reason. 

I seriously think us Celiac Canadians need a place to share information.  Facebook though isn’t the place for it.  Way to many flakes and fakes injecting bad information. shrugs!  Gonna be a lot of sick celiacs if they follow that @4K.

Print this item

Expand chat