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How Long Have U Had Cd?


wickedclown

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wickedclown Newbie

hey i was diagnosed with celiac disease april 1999 and i wanted to know how long you ppl have been diagnosed


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minibabe Contributor

I was diagnosed with celiac disease in December of 2004, but I was sick for about 3 years prior

Carriefaith Enthusiast

Almost 14 months!

KaitiUSA Enthusiast

I was diagnosed in January of 2004 but I was sick 2 years prior to that. I have been gluten free about 16 months

tarnalberry Community Regular

I figured it out in 2003, but I don't have many symptoms and I don't think I had it as a child....

celiac3270 Collaborator

Diagnosed in Feb. 2004, so I've been gluten-free for about 14 months...... I've had celiac disease much longer.

flagbabyds Collaborator

So I was diagnosed when I was 20 montsh old in 1992 so that would be 13 years+ :) Long time:)


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stargirl Apprentice

I'm with Kaiti at 16 months but I was sick on off through my childhood.

yllehs91 Apprentice

Diagnosed 9/27/04 but had a few symptoms ever since i was about 3 or so...all the docs said I'd grow out of it....ha--sure ;)

ErraticBinxie Explorer

I am almost 18, have been gluten-free since I was 9.

The funny thing is that I always think about the last gluten thing I ate intentionally when I think about how long I have been gluten-free. I was in fourth grade. I ate some animal crackers. Never again did I intentionally eat gluten. What a lame thing to end my gluten-filled life with huh?

MySuicidalTurtle Enthusiast

I have always had Celiac Disease.

I was diagnosed 2 years ago, though.

VegasCeliacBuckeye Collaborator

I know I'm not a teenager, but I was diagnosed in November of 1997, right in the middle of college.

teeta Newbie

Hello i am almost 17 and was diagnosed when i was 2 by my mother so that is about 15 years

DoctorDave Newbie

Was diagnosed when I was 2 so about 21 years.....

stef-the-kicking-cuty Enthusiast

OK, I'm not a teenager either. Does it count, when you look like one??? :P (hugs to all the baby-faces out there) I'm kind of self-diagnosed. My doc still doesn't really believe it. He's like: 'Ok, you're blood-levels were just slightly elevated and didn't show much and you had no biopsy. But, heck, if you feel better... just do what you want...and when you feel bad come back'. Other than the "Amstel light"-mistake I never felt bad again :P . So this "diagnosis" I got 07/21/04. But I suffered really severe for 7 years until anything came out. I also think, I had it all my life, but not as severe.

ianm Apprentice

I had symptoms that would come and go all of my life. In my mid-20's they started to become really severe. I didn't learn what was wrong until early 2004 at the age of 36 when I tried the Atkins diet. Dozens of doctors never once suggested a food intolerance. Since then my life has changed dramatically for the better. I am not the man I used to be at all and that is a GOOD thing.

kings-kid Newbie

I was diagnosed in 1999. I am also dairy intolerant, and have some problems with fruits as well

CrashLanden7 Newbie

This is my first post on the site, but I've been reading for a while. I live in Wyoming and feel like pretty much a loner up here. I am 20 years old and was diagnosed on my 14th birthday <_< , so... Gluten-Free for almost 7 years.

  • 2 weeks later...
dyingboy Newbie

hey guys i just got diagnosed for celiac today, it kinda sucks because my parents cooked a big meal and i couldnt have it. :blink:

MySuicidalTurtle Enthusiast

I don't think it sucks. You will have to start cooking for yourself then.

My family would ahve their meals and I would make my own. I still make my own but now that my Mom and borther were diagnosed they eat glutenfree, too. I just prefer to cook my own food because I did before.

KaitiUSA Enthusiast
hey guys i just got diagnosed for celiac today, it kinda sucks because my parents cooked a big meal and i couldnt have it. :blink:

We don't have it that bad..we can still have alot of really good foods..you'll get used to it and realize it's not so bad.

explodingmonkey Newbie

sorry for having the rude account name before as "dyingboy" i found it a little offensive

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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