How Long For Diagnosis?

[SharonF]

I am continually apalled at how long some people were sick before they were diagnosed with celiac disease. I consider myself very lucky; I started having daily diarrhea in May of 2004 and was diagnosed wtih celiac disease in August of 2004. No one ever tried to tell me that I COULDN'T have celiac disease because it was so rare.

(I was diagnosed with a blood test and colonoscopy. I think my TTG was 35.)

I was just wondering how long it took for others to be diagnosed?

[KaitiUSA]

I was healthy growing up tillI got sick in 2002 and was diagnosed in January of 2004.

Had some doctors tell me I was fine, putting it all in my head.

Switched doctors a few times then saw a doctor who suspected it right away...tests came back positive he referred me to a GI doctor....

The GI doctor then gave me another blood test by a reliable lab(Prometheus) who tested for a few tests I did not have done in the first test...came back high...also had a gene test done by them came back I had the HLA-DQ2 gene(one of the main ones associated with celiac)he gave me a diagnosis and said he wouldn't even have to do a biopsy.

I consider myself lucky compared to some other people on here that have been through much more then me

[cdford]

Well, let's see. I am 46 now. I was diagnosed at 44. I had been extremely ill since 1995 but looking back had symptoms off and on since childhood. Calculating the years...oh well, those numbers are too big to do in my head today.

[celiac3270]

Average in the US is 11 years--in the UK, a few months....for me, it was maybe 4-8 years--not sure exactly when celiac developed since I had similar symptoms from someting else.

[Guest BellyTimber]

--in the UK, a few months...

(am not too sure what you mean)

I've been affected for 50 years, and still haven't got a diagnosis, I had the acute symptoms which I went to the doctor about, 2 years and 5 months ago.

[Guest chickadee]

Symptoms of celiac disease are so common to other bowl disease especialy irritable bowl syndrome and the fact that so many of us have problems with depression it makes you wonder if the doctors think it's all in our head.

[Guest Viola]

I was actually told by a specialist that it was all in my head and to go home and quit worring about myself and look after my husband and children. That was way back in 1969, I wasn't diagnosed until 1989.

[celiac3270]

It doesn't apply to all people, but on average, that's the statistic. The US has a lot of ground to make up. 50% of celiacs in Finland, for example, are diagnosed. In the US, we've diagnosed 0.1%

[Rikki Tikki]

Hi Sharon:

The first time I can remember getting sick enough to notice was about 13 years before I was diagnosed.

Sally

[doordb]

After many Years of being ill and denying it. I can't believe how much a Gluten Free life has changed me in just 4 months.. What a wonderful thing, and to think of all the people that have been told they have something that can't be cured... I am so thank ful that it is just Celiac's

[Rikki Tikki]

Your right doordb, we should be thankful, we could have something worse. Thanks for making me think.......

Sally

[angel-jd1]

*colic as a newborn

*atopic dermatitis age 3

*sensitive stomach, even clothing hurt it all through childhood

*severe tummy troubles in high school, throwing up daily, lost weight, sick diagnosed with inflamed duodenum and put on axid

*immune system basically shut down, sick constantly, on rounds and rounds of antibiotics, dr's couldn't figure it out, nothing helped down to drinking only pedialyte and couldn't keep that down, lost 30 lbs, thought I was dying finally diagnosed at age 24

That is the very short version of me.

-Jessica

[judy05]

Hi,

I have been sick since childhood especially during winter and spring months. At 19 I started to take allergy shots. I was always the first to catch a cold and the last to get rid of it. I always had coughs, bronchitis that lasted for months. I married and had 2 children, always suffered from severe headaches, even migraines. All of my symptoms were attributed to "allergies". In the year 2000 I had a nodule removed from my thyroid, then I had a problem with my eyes, they burned and itched and bothered me a lot. About the time I was getting ready to retire, at 62, I began to develop GI symptoms, abdominal pain, diarrhea, terrible bloating. I was referred after many tests, to a GI doc, who diagnosed me with IBS and ran some tests. My gliadin IgA came back strongly positive and I started on the gluten-free diet. My gene test came back Neg. for celiac. Last month I did a York test and it showed strong intolerance for dairy, yeast, egg whites, corn, and wheat. I am in the process of removing these items from my diet. It is very hard because corn is in almost every processed food, even hotdogs and baked beans. I bought an egg replacer and I am going to prepare most of my foods. It has taken me 53 years but I hope there is a light at the end of the tunnel. I was able to sleep last night and I am exercising every day. Good luck to all of you!

[ianm]

I was 36 when I realized what was wrong. Doctors were of absolutely no help to me. They would just write me lots of prescriptions in hopes that one would eventually work. It is no wonder our health care system is going bankrupt. My life has been radically transformed since I stopped eating gluten.

[CaliGirl]

I've been lurking for a while and I figure this is as good a topic as any to introduce myself....

My family ate extremely healthy food when I was growing up, but everyone tells me I complained about stomach aches alot. Everything got worse when I went to college, but weight gain, headaches, anxiety, depression, a lowered immune system, and "food poisoning from the cafeteria" were all very common college problems to have. I just suffered through it, and though it was normal.

I recognized my mom's symptoms from a Woman's Day magazine about celiac disease, and a gluten-free diet cured what doctors thought was IBS. About a month later, I realized that I had many of the same symptoms that she had, but to a lesser extent. I've been trying to not get "glutenized" for almost a year now.

I sometimes miss the convenience of being able to eat like the rest of America. But then I just have to think how lucky I am that I found this when I am relatively young (I'm 25). I narrowly avoided diabetes, thyroid problems, dermatitis, colon cancer, fibromyalgia, etc, etc.

I'm still figuring out what I can and can't have (soy, peanuts, and now milk are off-limits), but I'm glad I'm not damaging my body like I used to.

[Rikki Tikki]

Cali:

You have a great attitude!

[CaliGirl]

Thanks, but I can't take too much credit for that--I haven't been glutenized in about a month and a half, so things are great! Talk to me after cross-contamination from eating at a restaraunt, and it's a whole other story!

--Rachel

[mytummyhurts]

Wow, I feel bad that so many of you had to go through all those problems! I was very lucky with my diagnosis. I had been feeling sick off and on for a couple years, but I thought that was just normal for me so I ignored it. Then it started getting worse last year where I was throwing up about once a week (I started asking my mom to bring home barf bags from her flights so I wouldn't be caught out somewhere unprepared) and I had loose stools all the time. So I finally said something to my gynecologist during a regular exam and she said "Let's test for celiac disease." I had actually heard about Celiac disease on a radio commercial and thought that it sounded like my symptoms. I'm so glad that I didn't have the problems a lot of other people have.

I'm surprised how much doctors still don't know about this though. My gastrointerologist didn't even know that much! I thought they specialized in this stuff. They told me before my biopsy that I could eat gluten free and the test would still work, but that's not true and I knew that so I didn't listen. They also gave me a sheet that said I could eat Corn Pops, but I looked at the box and it blatantly says on the ingredients list that it has wheat in it (possible ingredients change?). The sheet also said quinoa was bad, which also isn't true. Grrrr!

[Rikki Tikki]

Abby:

I think with this disease we have to be our own doctors. I think they don't know that much because they once considered it so rare. I wonder how much they even studied it in med school. My hope is that as more people are diagnosed with it the more information the doctors will have and then be able to help people. I'll never forget when the docoor told me I had it, that he didn't know much about it and that in a year I would know more about it than he did. When I saw him about a month ago he said he had just given a talk on it to other doctors. I sure hope he learned a lot in the meantime!

Anyway, I am glad you found out right away. What an astute doctor you had!

[mytummyhurts]

I wonder what we can do to help make it so doctors know more and test for it. I read somewhere that in Italy they test everyone when they are young because it's so common over there. But we're finding out it's not uncommon here. They should blood test everyone who is part of a race that it is more common in, I believe that I read that it's common in Northern Europeans? Which I am. If they tested early they could save a lot of people a lot of pain and suffering.

[Rikki Tikki]

I agree with you Abby. In Italy they test every child by the time they are six, or so I have read. If they tested everyone here it would save a lot of needless pain and suffering.

I think it must be something they have to look for specifically, and not something that would show up on a simple CBC panel. Does anybody know the answer to that?

[KaitiUSA]

Celiac will not show up on a CBC. They have to specifically test for that. Now complications of celiac such as anemia would show up in a CBC

[Rikki Tikki]

Kaiti:

So I am guessing it's a specific test they use to check for celiac disease. I wonder why they don't test everyone? Is it expensive or do they still think it's a rare disorder? I am just curious about why it takes so long to diagnose? It seems like it would be wonderful if they could find it earlier, before there are so many complications. I really hope in the future they test everyone.

[ianm]

In my experience the only thing doctors are taught in med school anymore is how to be a dope dealer. I have two cousins who are doctors and one of them has never even heard of celiac. The other had heard of it but didn't really know what it was. I asked them how much nutrition training is offered in med school and the one didn't have any and the other went to a two seminar on it once. They both said that about 75% of their time in med school was indeed phramacuetical classes. They then tried to tell me that it is really important to eat lots of whole grains. I told them to go eat something else. It seems to me that ConAgra and Pfizer really don't want us to get healthy, they would go out of business if we did. It looks like we really are on our own.

[KaitiUSA]

It seems to me that ConAgra and Pfizer really don't want us to get healthy, they would go out of business if we did. It looks like we really are on our own.

That is so true. These pharmaceutical companies just want our money..they don't care if we get better. The side effects are amazing too..I mean some of the side effects...strokes, heart attacks...come on I mean thats crazy. Most of the time they cover up one problem and cause another...they never get rid of the original problem either they just cover it up...I try to stay away from meds as much as I can.