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In Light Of Alexis Stewart's Comments

Canadian Karen

How long to diagnosis  

86 members have voted

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Canadian Karen Community Regular
Canadian Karen
Posted

I would like to get an idea about numbers with regards to the number of people who have been diagnosed after years of misdiagnoses and those who have been diagnosed in a timely manner.

Thank you in advance for your responses!

Karen

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psawyer Proficient
psawyer
Posted

I said 5 to 10 years for diagnosis, since that is the time frame when clear celiac symptoms were evident. But I had a variety of gastric problems for many years before that, and developed type I diabetes at age 31. I had eczema as a child (DH?) but it went away.

charolastra00 Newbie
charolastra00
Posted

I haven't been diagnosed, but I have had the symptoms for about 2 years. I was told that most were "normal" and that the rashes were just chronic hives. I am still young though- 19- so had I not had strong DH symptoms, I probably never would have started a gluten free diet and seen an improvement!

Green12 Enthusiast
Green12
Posted

Hi Karen,

I was never diagnosed, but have been eating gluten-free for about 2-3 years.

So there is also a significant percentage of people who aren't necessarily celiacs but live a gluten-free lifestyle due to gluten causing symptoms, and in some cases serious illness has been the result after years of ingesting gluten.

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Please note I have ammended the questions to clarify a bit more. I don't distinguish between "official" diagnoses or "unofficial" diagnoses. I also don't differentiate between actual celiac disease or gluten intolerence. To me, my stance has always been we are all in the same boat.

I didn't even realize that the way I worded the questions might bring that into question.

Please, everyone is encouraged to answer. I sure as heck don't put a speck of importance on positive bloodwork or positive biopsies, considering the high percentage of false negatives! Also, those who were smart enough to figure it out on their own without any doctor assistance is just as welcome to answer also!

Hugs.

Karen

Green12 Enthusiast
Green12
Posted
Please note I have ammended the questions to clarify a bit more. I don't distinguish between "official" diagnoses or "unofficial" diagnoses. I also don't differentiate between actual celiac disease or gluten intolerence. To me, my stance has always been we are all in the same boat.

Thanks for the clarification. I didn't want to ruin the poll :D

You'd be suprised the discrimination of not having an "official" diagnosis.

Judyin Philly Enthusiast
Judyin Philly
Posted

THANKS FOR POSTING THIS POLL KAREN..

GREAT IDEA

THE RESULTS FROM THIS FORM SHOULD REALLY BE INTERESTING.

JUDY

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Canadian Karen Community Regular
Canadian Karen
Posted
  • Author
Thanks for the clarification. I didn't want to ruin the poll :D

You'd be suprised the discrimination of not having an "official" diagnosis.

That I will never understand! Considering the number of variables and the fact that so much is still unknown about this disease, I don't understand how anyone could discriminate due to lack of "official" diagnosis!

Hugs

Karen

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Brilliant idea!

I don't want to screw up the poll, either. I am including my husband and children, as I think they all have some degree of gluten intolerance (I am assuming that my husband's addiction to gluten and resultant diarrhea when he eats lots of it is a sign of intolerance--but maybe I'm wrong there?). I also marked that I have no lasting damage--but I am still on Nexium for reflux and Synthroid for Hashimoto's. Compared to what most of you long-timers face, I'm not considering that lasting damage--is that in line with how you are thinking?

I also didn't include my parents, whom I also consider to have gluten intolerance, but they live 500 miles away, so technically, they are not in my household...

EDIT: oops, I read back and it says "family," not household, so I screwed that one up--sorry. Can I go back and edit the poll????

jerseyangel Proficient
jerseyangel
Posted

I voted, and I see the results very much mirror my own experience--which is that it took more than 10 years to get diagnosed, and that it left lasting damage.

I agree that with so much left to learn about gluten intolerance and Celiac, it's silly to discriminate between those who have an official diagnosis and those who don't. I think we all have a lot to learn from each other :)

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author
Brilliant idea!

I don't want to screw up the poll, either. I am including my husband and children, as I think they all have some degree of gluten intolerance (I am assuming that my husband's addiction to gluten and resultant diarrhea when he eats lots of it is a sign of intolerance--but maybe I'm wrong there?). I also marked that I have no lasting damage--but I am still on Nexium for reflux and Synthroid for Hashimoto's. Compared to what most of you long-timers face, I'm not considering that lasting damage--is that in line with how you are thinking?

I also didn't include my parents, whom I also consider to have gluten intolerance, but they live 500 miles away, so technically, they are not in my household...

EDIT: oops, I read back and it says "family," not household, so I screwed that one up--sorry. Can I go back and edit the poll????

I'm not sure. You can try it though!

Karen

ravenwoodglass Mentor
ravenwoodglass
Posted

Great idea, I guess the 40+ years it took for them to diagnose me after I was symptomatic fits under the 10 plus bracket. :D We should all probably print out these polls and bring them to our clueless doctors and send them to our insurance companies and congressmen, it might open some eyes.

Judyin Philly Enthusiast
Judyin Philly
Posted

great idea..starting with taking to my primary check up on Monday.

Thank

judy

missy'smom Collaborator
missy'smom
Posted

I voted for myself but I'd like to vote for my mom and sis. Sis is in the 30-40 yr. old now but was in her 20's when this started and took 8 yrs. with potential perm. damage, Mom is 68 and has suffered for 20 yrs. with alot of permanent damage, unable to care for herself and a Doc unwilling to order her gluten-free.

Lisa Mentor
Lisa
Posted

Karen,

I clearly remember in middle school being doubled over the bed in so much gas pain that I could hardly breath. The doctor told my "step-mother" (grrr) to give me lots and lots of fiber. So I drank Metamucil until I threw it up. These symptoms have followed me through life.

I most likely had IBS in the form of a gluten intolerance. In the 1960's there was no gene testing. Although I may have been predisposed to Celiac, I believe that I did not have it at that point.

My Celiac announced itself in June of 2004. I was house bound for two months with the malabsorption, fatigue, sudden diarrhea, memory issues and weight loss. When I was able to leave the house, my PCD was not able to help me and recommended at GI. Through the endoscopy and biopsy I was diagnosed with Celiac. My Celiac trigger was immediate.

So with that said, my poll may be a little off. I, in reality have been diagnosed two years ago and undiagnosed for two months. I have had symptoms all my life, but I don't attribute that to Celiac (perhaps pre-Celiac).

Neuropath is showing it's nasty little head.

Bravie Apprentice
Bravie
Posted

I would have to say that i've gone atleast 1 year without diagnosis. After I graduated from highschool, I started to drop alot of lbs mysteriously even though I was eatting alot. I'm not sure if this had anything to do with celiac disease or not. I didn't really have many symptoms until after a year working at my job. I started getting symptoms while I was at work about 6 months ago. Just nonstop fatigue, foggy head, diarrhea, dehydration, gas, bloating, and about a few weeks later, I started getting severe DH. It was unbareable. It all just hit me at once. Then finally in may, I went in for a check up and got a blood test, where I then discovered I had Celiac Disease. I'm not gonna bother go for a biopsy. Most of my symptoms ( DH, diarrhea, foggy head, fatigue) cleared up with a gluten-free diet, even though i'm still quite bloated and gassy :/...And not to meantion, I can't seem to figure out anything good to eat. I'm 20 years old and I eat like i'm 80 years old (lean chicken and carrots. I want a pizza and some tacos. Oh. But I can't eat DAIRY.........)

dadoffiveboys Rookie
dadoffiveboys
Posted

The only problem with this voting is the question 'how long it took to diagnose'? I mean.. celiac is a disease from birth right? So VERY FEW (if any) should be in the 0-2 range.. it's VERY hard to get a diagnosis that early. So almost everyone should be in the 10+ years range but I don't see that? Maybe I'm wrong in that there is early blood tests on children but..?

It should have been "How long did it take to diagnose AFTER having noticable symptoms?"

For example, I had 'noticable' symptoms for years but I had no idea what it was and thought that was 'normal' because that's what my dad had. Come to find out we BOTH have it!!

UR Groovy Explorer
UR Groovy
Posted

I took the poll.

I believe I'm gluten intolerant & not celiac. I have no diagnosis because before I knew about "Celiac", I was already over a month in and chose not to challenge due to the length of challenging wheat necessary. I felt that damaging myself further was unneccesary. When I say damaging, I'm refering mostly to the anxiety / depression. I feel as though I "lost" more than 20 years of "living" to anxiety/depression.

I experienced severe clinical anxiety & depression since 1981

I had experienced very obvious digestion problems since 1986

I began having a very specific heart arrhythmia September 2006

I eliminated wheatstuffs December 2006 and all of these symptoms have not returned (except the occasional mild digestion problem).

For the purposes of this survey, I am self-diagnosed based on a very strong response to ingesting gluten. Therefore, at the age of 40, I believe I went undiagnosed for approximately 25 years.

I do not believe that I have any permanent damage directly related to my gluten intolerance (except for the fact that I spent the better part of 20 years hating the world and dropping out of anything positive). I don't believe that my main condition (which does involve an auto-immune response and malabsorption and inflammation) is directly related to gluten, but that it has been said that it could be related to food and environmental allergies and an exaggerated response.

--------------------------------------------------------------

While it aggrevates me that Ms Stewart seems to have a rediculous conception that people would lie about any food intolerance, I have to say that her ignorance is not uncommon. I have read the other threads on this subject. I have found that many people in this world have difficulty conceiving something that has no realistic base in their own world. People by nature perceive what they choose to. They always will.

I applaud your efforts in making people aware of the seriousness of Celiac and Gluten Intolerance. The more that people are made aware of the difficulties, the more real it becomes to them. At that point, decent people can start to understand that we're not making this stuff up. Unfortunately, this is where the line is drawn. There are decent people and there are jerks. The jerks will most likely continue to be jerks.

Mango04 Enthusiast
Mango04
Posted
The only problem with this voting is the question 'how long it took to diagnose'? I mean.. celiac is a disease from birth right? So VERY FEW (if any) should be in the 0-2 range.. it's VERY hard to get a diagnosis that early. So almost everyone should be in the 10+ years range but I don't see that? Maybe I'm wrong in that there is early blood tests on children but..?

If I understand correctly, people are born with celiac genes, but not always with celiac disease. celiac disease can be triggered at any point in a person's life. So no, everyone shouldn't be in the 10+ years range, since for some people celiac disease isn't triggered until adulthood.

dadoffiveboys Rookie
dadoffiveboys
Posted
If I understand correctly, people are born with celiac genes, but not always with celiac disease. celiac disease can be triggered at any point in a person's life. So no, everyone shouldn't be in the 10+ years range, since for some people celiac disease isn't triggered until adulthood.

My question is still valid.. the question wasn't on 'celiac' disease.. but on gluten intolerance as well and it makes the first question .. just a little hard to pinpoint. The reason I say this.. is this question is what MATTERS the most! In an ideal world, we would want everyone to be in the 0-2 years and never have it 'bad'.. reality is most people I would think are closer to the 10+ years. For example, my 1 1/2 year old son started showing signs of constipation/Diarreah... so I removed gluten and he's fine... so I detected it in 0-2 years! My 3 year old son got all the way to failure to thrive, we detected it, and got him in 2-4 years. My oldest son has alot of different problems and we didn't catch it until he was 6! So much he needlessly suffered 'small' little things because we had no idea why he'd scream in the middle of the night. Is infant colic the first signs of Celiac disease? We don't really know - but that's the whole point here isn't it! :)

Mango04 Enthusiast
Mango04
Posted
My question is still valid.. the question wasn't on 'celiac' disease.. but on gluten intolerance as well and it makes the first question .. just a little hard to pinpoint. The reason I say this.. is this question is what MATTERS the most! In an ideal world, we would want everyone to be in the 0-2 years and never have it 'bad'.. reality is most people I would think are closer to the 10+ years. For example, my 1 1/2 year old son started showing signs of constipation/Diarreah... so I removed gluten and he's fine... so I detected it in 0-2 years! My 3 year old son got all the way to failure to thrive, we detected it, and got him in 2-4 years. My oldest son has alot of different problems and we didn't catch it until he was 6! So much he needlessly suffered 'small' little things because we had no idea why he'd scream in the middle of the night. Is infant colic the first signs of Celiac disease? We don't really know - but that's the whole point here isn't it! :)

I was just addressing the "celiac is a disease from birth" part of the question. I thought that was just a myth that (ironically) results in quite a few misdiagnoses, so that's why I responded, but I might not know what I'm talking about LOL

Generic Apprentice
Generic
Posted

Colic can't be the first sign of celiac. I breastfed my son and he had colic. I was gluten-free then and so was he.

mftnchn Explorer
mftnchn
Posted

I didn't vote because...

I didn't have a clear beginning of symptoms that I only relate to celiac, other than perhaps the big C and that is most of my life.

I think probably I have a number of family members who are gluten intolerant but haven't been diagnosed or haven't decided to address this. (Several have diarrhea, mother has constipation, and I am a double DQ2)

I haven't any idea if I have damage, its extent or whether it will resolve.

rsm Newbie
rsm
Posted

Self diagnosis here, both of my children have the same thing, they figured it out. 25 years for me diagnosed with IBS. Permanent nerve damage, pernicious anemia, acne into my 50's. Strange rashes, cramps, bloating, it's been a long journey. My mothers side of the family all have this.

I have been gluten free by my own choice for 5 months and am feeling way better. I'm sure there are multitudes out there suffering with no idea of what is wrong.

GeoffCJ Enthusiast
GeoffCJ
Posted

Just to be a bit of a downer, but having spent the last couple years studying marketing, and marketing research, people should be VERY, very careful to draw any kind of conclusions from this poll. This forum is a perfect example of "self selected sample". If there was a question on there about "do you have gluten intolerance or celiac disease?" the number would be nearly 100%. You certainly can't conclude that 100% of people have celiac or Gluten intolerance. Similarly, I have a strong suspicion that this board tends to attract those that are most extremely affected by the disease. That is, those that have mild reactions and mild symptoms would be less inclined to "focus" on the disease, and spend the time to be as educated and careful as the folks here.

I have a co-worker who is like that. She has noticed an improvement in how she feels without gluten, and tested positive through Enterolab, but her symptoms are mild. She eats "gluten free" but doesn't really worry abouyt CC and the like. I'm not saying that's right, but I'm guessing there are many, many many people out there like that.

Being as that this is far, far from a random sample, one must be very, very cautious about drawing any conclusions.

Geoff

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