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Latest Threads
Finding Safe Dining
Forum: Tips with information
Last Post: Celiaco
02-03-2020, 10:12 PM
» Replies: 0
» Views: 12
Living in a gluten home
Forum: Tips with information
Last Post: Celiaco
02-03-2020, 09:44 PM
» Replies: 0
» Views: 16
5 second Rule
Forum: Tips with information
Last Post: Celiaco
02-03-2020, 09:21 PM
» Replies: 0
» Views: 18
Facebook Group - Living G...
Forum: Tips with information
Last Post: Celiaco
02-02-2020, 11:30 PM
» Replies: 0
» Views: 99
An Auto-immune disease th...
Forum: What is Celiac Disease (CD)?
Last Post: Celiaco
01-16-2020, 05:28 PM
» Replies: 0
» Views: 19
Purpose and Rules of Cond...
Forum: CDCKMA (Celiac Disease Can Kiss My A$$)
Last Post: Celiaco
01-16-2020, 04:43 PM
» Replies: 0
» Views: 16
Bedtime Shower Thoughts A...
Forum: What started this idea?
Last Post: Celiaco
01-16-2020, 04:32 PM
» Replies: 0
» Views: 23

 
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.

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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.

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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.

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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.

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Information An Auto-immune disease that is destructive in its own right.
Posted by: Celiaco - 01-16-2020, 05:28 PM - Forum: What is Celiac Disease (CD)? - No Replies

This is how I see this disease.  I will elaborate as much as I possibly can that explains this disease in depth.  Its similar in nature to other auto immune diseases where it attacks the body.  Its just the parts of the body effected are different from one to the next.  For instance, MS attacks the nerves/brain of the body, Auto Immune Hepatitis (Moms original diagnosis) attacks the liver and this disease Celiac attacks the Intestines and can cause a nasty dermatitis rash. 

I honestly beg to differ that only the intestines/skin can be effected; as I'm like walking proof that my entire GI tract seems to be in an uproar for the last 9 1/2 years.  The journey itself is honestly wonky that I am definitely not a textbook case of the 1990's Celiac patients of that time.  This disease I believe can show up as many faces but only if you are genetically susceptible.  I personally don't know about sensitivity but  understand its almost the same as the disease without the classic immune response.  I however wont be covering it as i am genetically positive for the disease.  The link maybe could be there which very well could explain the symptoms I still have today even when not eating the stuff.

So what is Celiac Disease? 

Celiac disease is an auto immune response coded by a genetic defect on the HLA gene.  This gene tells your immune cells how to behave and provides the template for detecting foreign invaders.  When either HLA-DQ2 or HLADQ-8 is present and activated, the gene can tell the lymphocytes to see the protein giladin found in Gluten (Wheat, Rye, Barley and Oats(unpure)) as an invader.  Due to the nature of the reaction in the body and where it usually occurs, the villi can get destroyed in the process resulting in malnutrition, vitamin deficiency (A,B,D,K), and host of other deficiencies that will be discussed in the forum.

How do you get it?

Its a genetically inherited disease that you get from your mom or dad.  Either parent can give you the genetic defect and it can make the condition silent or it can make it very known.  Some people never show anything but deep down in the body's core a war is wagging.   For people that have conditions like unexplained bowel problems like constipation, gas, descended bowel or pain in the right quadrant, they very well could possibly have this disease in a silent state which when wakes up is very hard to tame.  It took my body 32 years to start to really show anything and I am still battling it out even being gluten free since 2012.  And the thing is, i didn't show normally.  I ramped up with symptoms unexplained and only a scope was giving them the answer.  For my mom, that wasn't the case.   Her liver decided to ramp high to the point it killed her.   One interesting thing though was when my doctor ran a genetic test for it, it showed that i was HLA-DQ8 back in 2012.  Years later as a gift in 2017 I did 23and me, it too said HLADQ8.  So wanting to know which parent, i had mom and dad do the test and the test came back that mom had both variants.  HLADQ2 and HLADQ8.  A year later she passed away as she was battling Auto Immune Hepatitis so they say.

Whats the treatment?

   

Life long gluten free diet and you must really look at what you eat in terms of grains.  You need to replace what you aren't getting or you will only get worse.  You decided to eat oats, you need to know where they are grown and whats grown near them and if that field ever had other bad grains grown there before.  You might even develop other intolerance's all because of the gluten free spread of products available.  You may even develop diabetes as a result.  In the end you have to constantly adjust to make sure you are getting the nutrients needed.

This disease is also a complete mid fuck.  For me, it lead to PTSD and now a life of anxiety medications because the disease just wouldn't shut up even though i was gluten free.  All the foods you loved and enjoyed you no longer can have?  Your life is re-written overnight once the disease is known.  Maybe some can handle it better than others, but i miss my beer on hot summer days, and i miss wing nights at the pub.  All this stuff is no longer gluten free. (Trust me, there is no good beer replacements; ive tried them all.  They all have a bad after taste; some chemical.  Yuck!  And deep friers unless dedicated are not gluten free)

You said other intolerance's?  Like?

Fructose Intolerance:  The tract can get so destroyed like in my case, i probably never ever regain those cells back.  no matter what i do, this sugar only gives me gas; severe pain and must me avoided.  There is no war between by body and bacteria for this sugar.

Sucrose Intolerance:  The tract can get so destroyed like in my case, i probably never ever regain those cells back.  no matter what i do, this sugar only gives me gas; severe pain and must me avoided.  There is no war between by body and bacteria for this sugar.

Dairy:   For some reason during my exposure i also developed an intolerance to Dairy.  No doctor can explain this.  My only explanation is it also got in and was seen by this defect and an attack was launched.  Now my cells remember it so i can never have a piece of cheese again.
 
Lactose:  The tract can get so destroyed like in my case, i probably never ever regain those cells back.  no matter what i do, this sugar only gives me gas; severe pain and must me avoided.  There is no war between by body and bacteria for this sugar.

Beef:   Very weird.  Maybe its hormones.  I dunno.  All i know is this meat makes my gut hurt really bad and i don't really process it very well.  (I know gross)  I honestly blame wendy burgers as i loved them so much.   I remember in 2006/7 when we had it a lot, every time i hurt in the right quadrant.

FODMAP:  Very strange.  A diet that seemed to give me strength and got me back to work in 2015; one that is suppose to be part time, i am permanently stuck with.  All sorts of fruits, vegetables and sugars i can not have.  The reaction:  Its like Celiac. without the destruction!

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Information Purpose and Rules of Conduct
Posted by: Celiaco - 01-16-2020, 04:43 PM - Forum: CDCKMA (Celiac Disease Can Kiss My A$$) - No Replies

Currently this is simply a repository for those that I love to understand.   Its also to help them understand that this is genetic and they too could be effected.  It doesn't show up for all and is still just as destructive when silent.

As more users are added depending on where i see this going, this page will change.

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Information Bedtime Shower Thoughts Actually!!!
Posted by: Celiaco - 01-16-2020, 04:32 PM - Forum: What started this idea? - No Replies

   

Most of my critical thinking takes place when I usually am in the shower.  And with a cold day @ -38C like it has been these past weeks, I can spend 30 minutes just standing there thinking.  Last night was no exception.  

Prior I had been in the garage medicating and of course was thinking about the log files of this server and the cool tool I found to see who is looking at what and how often.  Knowing my tolerance is gaining, what was going on in my head wasn't being caused by medication.  I honestly know what too much feels like and this wasnt that.  Prior I was thinking about designing my own application but then my search found httplogviewer.  All day Jan 15, my ears was in a constant ring.  Its been now 9 1/2 years of this wild ride with Celiac trying to establish its link to my existing symptoms still remaining, and of course the loss of my mom makes thinking sometimes more interesting as I try to establish the link.  I honestly don't think mom had what they said being PSC; which I actually think was Celiac which ventured into Celiac hepatitis thus PSC.  Do you believe in the supernatural?  or that our loved ones stay and try to help?  I do.  And there has been a few times I have felt a presence but this night was different.   Last night Jan 15th was very different, as the 16th was rolling around as this thought process really ramped up.

It was  like, she is somehow making me think this way to help me come up with a cool solution.   Well the end result of this thought process was to dump my Celiac journey so that it might maybe help others in my family that could have this genetic disease which is a real shit storm.  Also during this process I was told of things to come which is some what frighting; which I will keep to myself as I don't want to be known as a freak.  Oddly some of this came as I transitioned from the shower to the bed with Big Bang Theory running in the background.  Someone or someone(s) was telling me it will be Ok, that I have a lot of knowledge in this area and that the journey is and will be a difficult ride if symptoms really transpire later in life.  I was comforted in knowing that my journey should soon end and that I will be able to put the disease behind me as i continue to avoid the protein gluten (giladin).  For some people though, the disease itself just doesn't show up and as the genetic fingerprint plus the immune system coded with this defect is allowed to react destroying the body, which for some people they actually don't show anything till its too late.  When ignored, it will transpire to death and its as simple as that.   Being a Celiac can be a death sentence in its early stages or when found too late but if the right treatment is used to heal the body, allowing the years of accumulated giladin proteins that manged to cross the blood/intestinal barrier, polluting the liver in the process which allows it to settle in other areas of the body, will eventually be removed as the immune system continues to seek and destroy.

Now let me elaborate on what i mean by a death sentence.  It only is when found too late meaning you just found out and your liver is like killing you.  Its a death sentence in the beginning because you literally have to reevaluate your life, your surroundings, what you do, how you do it.  You have to research anything you put in or on your body.  It sucks balls.   Lots of favorites are lost and forgotten.  The anxiety and depression alone created if not treated can destroy you mentally and physically.

There are a few forums and blogs out there that have the same information.  This is my journey and is not intended to replace any medical advice.  This is actually a project for therapy as I cant really get into a ring with the disease.  So this is my way to embrace and say FU to the disease.

Bill Elter
Jan16-2020

I want to share my journey with you and at the same time establish the link that mom was Celiac.   Something just keeps telling me she was and i honestly believe mom was one of those people that ended up not finding out because it was already way to far along to be seen by conventional tests.

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