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foodiegurl

Age Of Diagnosis?

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I found out about celiac disease from research online about gallbladder problems...which I was having. It seemed my whole gastro system was ill. I lost 26lbs in a few weeks and no longer wanted to eat. NOT GOOD. I found a web site of a kind lady from Canada who described her childhood indicators of celiac....short stature ...extremely thin as a child...many infections....many dental problems...That was me! I was convinced enough to try the diet. My Dr. is going along with it. I am 65.

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Age 56 for me, self diagnosed after a lifetime of digestive woes beginning in infancy (terrible colic). I guess I should have known earlier....my mom was diagnosed 40 years ago when she was in her early 40's. Since my symptoms weren't as extreme as hers and I wasn't underweight, it didn't occur to me that I had it...she had been told her children's chances of having it were maybe 10% or some such. I didn't get really sick until about a month before I decided to find out what was going on. I was already fairly gluten "light", so a blood test revealed nothing, but Enterolab testing was very helpful and I also got the gene test to be sure. Going gluten free certainly cleared up all the symptoms quite quickly, so I have no doubt about whether or not I should eat gluten. Turned out my whole family has the gene (that was a no-brainer because we got my mom tested and she has TWO celiac genes, so obviously we all got one from her. My two kids also have one, and my brother's two kids as well, PLUS, thru our flurry of testing we found out my brother's son has TWO celiac genes as well, which meant he got one of them from his mother, who had zero idea it was in her family.

My other brother and sister obviously have the gene, but think they have no symptoms (yes they do...I know they do, but they won't look into it and they are in denial) so they continue to eat gluten. Nothing I can do about that!

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Looking back I'd say my symptoms started when I was 15 after I had a severe case of mono. I was just diagnosed though back in October. I'm 25 and very thankful I got my diagnosis now. Some of the stories on here from people who waited a life time for a diagnosis are bad enough to make me cry!

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41 years-- official diagnosis. DH and positive response to diet.

But like many people here the back story goes like this:

8 years tested with "barium big gulp" for intestinal problems. Motility issues found.

17 years diagnosed with IBS-D.

33 years-- positive celiac panel (blood work), but "negative" biopsy-- released into the wild to eat gluten freely. Told I did not have celiac.

When you think about this, it is ridiculous really that it should take so long. I was a classic case.

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Looking back I'd say my symptoms started when I was 15 after I had a severe case of mono. I was just diagnosed though back in October. I'm 25 and very thankful I got my diagnosis now. Some of the stories on here from people who waited a life time for a diagnosis are bad enough to make me cry!

It is heartbreaking isn't it?

I had mono at 17 and that is about when I identified bread as a problem.

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Ah, but we survived in spite of it all.

That is no trivila matter.

And here we are today to help educate people. I, for one, plan to give my suffering a purpose.

:-)

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I was just about 30.

It took 5 years after symptoms started. I got the usual runaround - IBS, nerves, etc.

My first GI was close, though - he said IBS shouldn't wake you up in the middle of the night, and it sounds like celiac, but this was before genetic/blood testing, and he only took biopsies from 4 spots at the top and didn't find anything of course, so without seeing flat villi, how could it possibly be related to gluten? :) It was actually my internist who was my biggest advocate and was most helpful. Both GI docs were useless.

My younger brother had it rougher, though. He still actually hasn't been "officially" diagnosed b/c he's a grad student and starting a company (crummy insurance issues). He had problems for about 15 years. Went to every pediatric specialist and GI and they said he just has a nervous stomach. This was starting in the early 90s. He was always sick - even in the middle of the night. Had trouble keeping on weight, tooth enamel problems, etc. When I got my test results back and went gluten-free and felt better so soon, I called him and said I think I know what's wrong with you, too. Try going gluten-free.

He did, and about a month later called my mom and said he never knew he could feel this normal. He was 28 at the time.

I am of the belief that if you were sick and go gluten-free and feel better, and maintain a strict gluten-free diet, who cares what the official clinical diagnosis is. (ie, you have celiac only if they see flat villi, or, if you are just "gluten intolerant" have genes, symptoms, positive blood tests, and respond to gluten-free diet.)

I have DQ8, and igG was above 80. (IgA was 1, so go figure..) Still don't know brother's genetic results, but I don't think he'd ever eat gluten to get tested.

Mom has DQ8 but no symptoms. Dad has DQ2 and DQ8 and lifelong symptoms, but still refuses to go gluten-free. Doesn't like Redbridge - ha ha.

Dad's mom had rheumatoid arthritis and lifelong upset stomach, so in hindsight, I bet she was the "carrier." But, she's long gone, so we'll never know....

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I was 52 when diagnosed. I found out I had osteoporosis the previous Fall and when I went for a physical that January, I was extremely anemic....my ferritin level was 1. They sent me for an endoscopy because the doctor thought I might have a bleeding ulcer from the Boniva I was taking. When I mentioned that I was lactose intolerant also, she ran the bloodtests for Celiac the same day as the procedure and voila....I had Celiac Disease.

Looking back on my life, I had other symptoms that came and went.....nervous stomach as a child, colitis as a teenager, terrible Restless Leg Syndrome, bloodwork done in my 20s said I might have Lupus or RA, but a repeat test said I was 'fine'. After I had my first child at 28, all my digestive symptoms went away except for the lactose intolerance which I controlled with Lactaid products.

And I'm happy to say after a year of gluten-free living, my RLS and lactose intolerance have disappeared, my iron levels have risen nicely and my doctor said last month after running the Celiac panel again "If I didn't know you have Celiac Disease, I wouldn't know you have Celiac Disease!" There is hope!

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I'll be 30 next month, and I just got my positive blood results last night. I've had symptoms since I was a kid, but was never tested for Celiac. I started suspecting it about a year ago, and finally got myself to a GI who was incredibly dismissive and just told me I was a "stressed out person who had IBS like the majority of women my age". I left that doctor right away and I ended up seeing a wonderful GI doctor who tested me right away, and called me to let me know about my blood work. It's nice to have the mystery of my symptoms uncovered!

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33 years-- positive celiac panel (blood work), but "negative" biopsy-- released into the wild to eat gluten freely. Told I did not have celiac.

When you think about this, it is ridiculous really that it should take so long. I was a classic case.

This is exactly the reason why the so-called "Gold Standard" diagnosis fails so very many people. No Celiac diagnosis should just entail the biopsy results.

Actually, that could be grounds for a malpractice suit so why they keep doing it boggles the mind! :huh:

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I was 33. Found it in my son first. While doing research I figured I had it. My blood test came back clear but I was still skeptical so I did the stool sample through Enterolab and asked for more tests to be done. The DEXA scan said that I had osteopenia. Given my family history of medical problems, my symptoms, the poop test and the DEXA scan I stopped there and went gluten free with my son. Life is better gluten-free.

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I am curious what everyone's age here was at diagnosis. Whenever I heard of someone having Celiac before, I assumed they knew since they were babies. So, imagine my surprise when I found out at 36.

Now, I know better.

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21

Wanted to save depressing health issues to my late 40's but by goddd i have to deal with this cr*p at 22.

Im a symptomatic too, it scares me to think I have another 60 years dealing with meticulous gluten free diet as I cant even get it right now. My doctor says in Melbourne at the Alfred there is a vaccine/ pill in a third trial stage.

I hope in the next years to eat as normally and simply take a pill. hoping for a cure in my life time without a doubt

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I was late forty's when diagnosed gluten intolerant after 2 years of neurological, muscular problems by a wonderful neurologist who didn't give up on me. The clue was my protein levels were low.

I have been strictly gluten free for 3 years with the occasional oh sure I'll have some of your french fries that were fried in the same oil with the onion rings.

I was in denial the first year but stuck to the diet. He told me it could take years to feel better and it has taken a long time. Sometimes I am so tempted to have something gluten especially at parties when people ask....just a little bit of cake wouldn't hurt you would it? Can't you just scrape the topping off the pizza and eat it?

My sister has celiac symptoms surfacing now and she is 42. Her family doctor doesn't seem to know the tests to run. Would it be worth it for her to test at Entero lab?

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I was diagnosed at 25 (just a couple of weeks ago). My symptoms started When I was 23 (Last January). Although, I wonder if I have had it all my life. I do have hypoglycemia(since I am 8) and I was diagnosed with hypothyroid(since I am 17). I am also only 4'10''... I wonder if that has anything to do with celiac. I read that people with celiac could be short in stature.

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