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Introduction And Appreciation


BrianH

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BrianH Newbie

Okay, well I can't believe I have found this community so late in my Celiac life. I was diagnosed with this drag of a disease when I was 8, and I am 21 now. I'm gonna be upfront about this...I have hardly followed my diet at all. I cut back on Gluten and wheat intake a bit, and have cut it off completely for a few weeks here and there. But more often than not I find myself cheating instead of keeping on track.

Honestly, I didn't think I have been suffering any symptoms and have been blaming alot of my own suspected problems on my being alone. But after reading through some posts here briefly I realize my ignorance. Sleeping is my biggest problem, followed by fatigue. Although I am very athletic in physical sports (MMA Fighting) I always find myself shorter on energy and more prone to sickness than others. My mottos have been "Suck it up." and "Whatever happens, happens."

Now, I fear I may have been causing myself some damage over the years. The last two times I was properly drunk (no beer, all hard liquor) to the point throwing up something different has happened. The puke was very red, I think it may have been blood because I didn't eat anything red in color. I hope its not related to my failure to follow a gluten-free diet.

Well, I am looking forward to be part of this community. And hopefully find some solace and motivation to "not cheat".


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KaitiUSA Enthusiast

Welcome to the board.

Well definitely there can be more serious effects by not following the diet. The statas are very alarming. 40-100 times more likely to get cancer, diabetes, and other life threatening and disabling illnesses. It knocks an average of 10 years off your life too.

Thankfully, you realize the mistake now and are changing that. This site will definitely help with that. There are wonderful people here with support and alot of knowledge so if you have ?'s just feel free to ask them. No questions are stupid here.

tarnalberry Community Regular

Welcome to the board. I hope the support you find here will help you keep to your diet, because it is SO important in order to have a long and healthy life. Eating gluten-free can be onerous at times, but it doesn't have to be all bad. Feel free to ask any sorts of questions, or post about what parts trouble you the most when trying to follow the diet, and I'm sure you'll get some helpful advice! :-)

watkinson Apprentice

Welcome BrianH,

I know how you feel about the fatigue, it's terrible. <_<

As a kid I seemed like a healthy happy kid, except for the fact that I constantly got every cold, flu, virus, tonsilitus, or infection, that came my way. Obviously looking back I realize that it was because of a compromised immune system. I also slept alot as a kid. When I was a teenager (high school) the stomach issues started. A few years later came rashes and ecxema. In my early 20's came terrible, crippling at times, joint pain, headaches, sleeplessness, depression. stomach pain, general yuckiness. A few years later came peripheral Neuropothy (nerve damage) Chronic fatigue and Restless leg syndrome, terrible Fibromyalgia,

Insomnia, horrendous stomach attacks, chronic diareah, and Thyroid problems. I saw many doctors over the years as my symptoms continued to get worse and worse until I begged God to cure me or let me die. :( After 7 years of living in constant horrible pain, I was FINALLY, properly, diagnosed. I balled my eyes out to know I was a celiac because FINALLY I could get rid of this pain and manage my problems. I have been gluten-free for over 1 and 1/2 years and most all of my problems are completely gone. :)

I am telling you all of this so that you understand that Celiac disease is not to be taken lightly. It is a chronic disease that WILL continue to gett worse and worse with more and more problems and symptoms. Until you go completely gluten-free and stay that way, your body will NEVER have a chance to heal. I feel that you are lucky (yes, I said lucky) to have discovered this as a kid. I would give anything to have found out then and get all those years of my life back! I would encourage you to stay on the diet while you are young and healthy so that you can staly that way. :)

Wendy

P.S. I have always been an active person, but my energy levels now top anything I ever had before. :D

BrianH Newbie

Thanks for the swift and warm welcome :)

I remember cheating used to really bother me, making me sick for days...but overtime it seems to have diminished in those immediate type symptoms. A few initial questions hehe...

1. Could I still be causing damage but just not feeling any of it?

2. How sure are those tests they use to diagnose and is there any chance that I may have never had it or outgrown it?

3. Right now my primary concern was the puking blood after drinking...could that have been caused by Gluten damage like ulcers, etc to my digestive system?

I'll have more later for sure, but there is my warmup lol.

BrianH Newbie

Wow, thanks Wendy...that was very insightful. I have felt so many of those symptoms on a constant basis over the years. Can't wait to see whats in store for my "golden years".

KaitiUSA Enthusiast
Thanks for the swift and warm welcome :) 

I remember cheating used to really bother me, making me sick for days...but overtime it seems to have diminished in those immediate type symptoms.  A few initial questions hehe...

1. Could I still be causing damage but just not feeling any of it? 

2. How sure are those tests they use to diagnose and is there any chance that I may have never had it or outgrown it?

3. Right now my primary concern was the puking blood after drinking...could that have been caused by Gluten damage like ulcers, etc to my digestive system?

I'll have more later for sure, but there is my warmup lol.

<{POST_SNAPBACK}>

Alot of people do not get any symptoms so yes you can be doing so much damage and not have symptoms.

You can NEVER outgrow celiac..the only cure is the gluten free diet..there is not a cure and it is a genetic autoimmune disease

You could have other things wrong that celiac caused..I can't tell you whats wrong because I do not know but it could be a result of celiac being untreated for a long period of time.

I am also very athletic.At first I cheated because I did not feel anything. I felt bad no matter what I ate so I thought it did not matter. The longer I was gluten free the more I was sensitive to it. I've been into sports my whole life and I was so tired pre gluten free along with other symptoms. Mono triggered my celiac to activate..I literally could not walk up the stairs without feeling like i needed to sleep. I now have soo much energy once again though.

There are some mainstream brands that will not hide anything either even with otherwise questionable ingredients. They will indicate gluten in the form of wheat,rye,barley, and oats. They are the brands that follow:

Aunt Nelly’s

Balance

Baskin Robbins

Ben&Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Dove

Edy’s

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman’s

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Snack

Kraft

Libby’s

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely’s

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain’s

Also the safe and forbidden lists from this site will help with other brands which can hide gluten under many different ingredients.


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watkinson Apprentice

Hi again BrianH,

Yes, your body is doing damage even if you don't have symptoms. Celiacs is an autoimmune disease. A healthy bodies antibodies are supposed to attack and kill bad bacteria, viruses, poisons, ect. The problem is that our antibodies are screwed up. They think Gluten is the enemy so they attack and kill it but in the process attack and kill our healthy intestinal cells. This causes terrible damage to the intestines making them unable to absorb nutrients. We become anemic, (iron defficiency), get nerve damage, (B-6 and B-12 and Thiamine difficiency), Vitamin K defficiency, osteoperosis, (brittle bones due to calcium malabsorbtion), depression, ulcers, a miriad of other problems (about 200 ) eventually cancer and early dealth.

Unfortunatley you cannot outgrow or cure any autoimmune diease. And testing is very accurate. There is a chance of having a false negative, but I have never heard of a false positive. If the antibodies are present then you are a celiac. period.

And, yes you could have ulcers or leacky gut syndrome (holes in the intestine)

Try going completely gluten-free and see if that clears up. :) otherwise you should see your doctor.

Good luck, Wendy

you can go to this site to get amazing list of regular gluten-free foods found in mainstream grocery stores.

Open Original Shared Link

BrianH Newbie

Thanks a ton Kaiti and Wendy! Thats a wealth of helpful information. I feel so stupid for pretending it didn't exist. Better late than never right? I'm so glad I found this site today, and really appreciate your help!

tarnalberry Community Regular
Thanks for the swift and warm welcome :) 

I remember cheating used to really bother me, making me sick for days...but overtime it seems to have diminished in those immediate type symptoms.  A few initial questions hehe...

1. Could I still be causing damage but just not feeling any of it? 

2. How sure are those tests they use to diagnose and is there any chance that I may have never had it or outgrown it?

3. Right now my primary concern was the puking blood after drinking...could that have been caused by Gluten damage like ulcers, etc to my digestive system?

I'll have more later for sure, but there is my warmup lol.

<{POST_SNAPBACK}>

You could easily be "used to" the gluten effect, and will find that you notice the effect again as you go gluten-free.

1. Yes, you are still getting damage. It may lead to nutritional deficiencies, the symptoms you're experiencing, or any of the other complications of untreated celiac disease.

2. You definitely haven't outgrown it - genetics can't be outgrown. And the testing is fairly accurate. As has been mentioned, false negatives happen, but not false positives.

3. If you hadn't eaten anything red, then that is the likely explanation. If you're not experiencing stomach problems, it may have been a one time thing, but it is also worth talking to your doctor about.

nettiebeads Apprentice
Okay, well I can't believe I have found this community so late in my Celiac life.  I was diagnosed with this drag of a disease when I was 8, and I am 21 now.  I'm gonna be upfront about this...I have hardly followed my diet at all.  I cut back on Gluten and wheat intake a bit, and have cut it off completely for a few weeks here and there.  But more often than not I find myself cheating instead of keeping on track. 

Honestly, I didn't think I have been suffering any symptoms and have been blaming alot of my own suspected problems on my being alone.  But after reading through some posts here briefly I realize my ignorance.  Sleeping is my biggest problem, followed by fatigue.  Although I am very athletic in physical sports (MMA Fighting) I always find myself shorter on energy and more prone to sickness than others.  My mottos have been "Suck it up." and "Whatever happens, happens."

Now, I fear I may have been causing myself some damage over the years.  The last two times I was properly drunk (no beer, all hard liquor) to the point throwing up something different has happened.  The puke was very red, I think it may have been blood because I didn't eat anything red in color.  I hope its not related to my failure to follow a gluten-free diet.

Well, I am looking forward to be part of this community.  And hopefully find some solace and motivation to "not cheat".

<{POST_SNAPBACK}>

You will find solace and encourgement here. I used to go ahead and eat wheat after I was first diagnosed. But then I decided the pain, fatigue and all the other symptoms just weren't worth it. It will take a while for your body to heal, but you will feel better. If you have to have your carbs, find a health food store and look for the gluten-free items, or order them off the internet, and learn to read those labels!

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      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
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