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Special K

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Special K Newbie
Special K
Posted

Hi everybody, My name is Katheryne, I'm from Hawaii. I've been dealing with this for about 4 years now. I went to my doctor and she took a bunch of test and nothing. Now at first we thought it was acid reflux, I took prilocec and It worked the first time I took it, so we thought it was acid reflux, but then it came back, I took it again it didn't work. So the doctor sent me to get an upper gastrointestinal endoscopy and he said it was clean nothing but a little redness. So were back to square one, and then as if it was a sign from god, my older sister was watching the view and Elizabeth Hasselbeck was talking about how she used to feel sick, and when she went on surviver and ate nothing but fish and rice she felt better. So she told me about it and we went online and read about it and it's pretty much the same symptoms I've been having, gas, bloating, nausea, weight loss, milk intoerance etc. So I stopped eating stuff with gluten in it for about 2 weeks and I felt better, then I went to see my doctor I told her about all this stuff, so I took a blood test and it came back negative, I thought maybe because I stopped eating stuff with gluten right before taking the test. She told me that if I did have celiac disease then my pediatrician would have found it when I was little so I really don't know what to do. I know maybe it could be something else like IBS, but I feel better when I eat stuff without gluten.

And if you guys could give me a list, or websites with gluten-free foods you can eat I would really appreciate it.

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tom Contributor
tom
Posted
She told me that if I did have celiac disease then my pediatrician would have found it when I was little

Omg I can't believe a Dr would say this!! It goes undiagnosed every minute of every day.

My niece was sick from age 2 and underwent test after test and wasn't diagnosed until she was 8 or 9. But I think much more often, ppl don't show real problems until they're older, and I've never heard of pediatricians screening for celiac. (Or once I read they were somewhere in Italy was it?)

In the 60s, I was put on a gluten-free diet until I was 5, as the prevailing 'wisdom' at the time was that kids "grow out of it".

Can't say whether u have celiac or a general gluten intolerance, but it sure sounds like you'll feel a ton better w/out gluten.

There are many sites where you'll find lists of gluten-free foods, lists of things that sound gluteny but aren't, and lists of things u wouldn't expect to have gluten but often do. I always mention toothpaste.

Cheers to good health!

dlp252 Apprentice
dlp252
Posted

Welcome Katheryne! Yes, I can't believe that doctor said that.

Besides the fact that Celiac is often missed, children aren't the only ones who develop it. Many, many people don't develop it until adulthood! Crazy doctors!

If you feel better without gluten, then there is your answer.

BlackburnK Newbie
BlackburnK
Posted

Hey, I would read the posting that I posted (in the coping with forum): College student recently diagnosed with celiac disease-- SO many ppl responded with GREAT information. read it and print it out :)

Ursa Major Collaborator
Ursa Major
Posted

Hi Katheryne, and welcome to this board.

What an ignorant doctor you have!

So the doctor sent me to get an upper gastrointestinal endoscopy and he said it was clean nothing but a little redness.

Did she take biopsies of those red areas? It is NOT possible to tell if the villi are damaged with the naked eye, you can only see it with a microscope. And if there is redness, then something isn't right. The villi will get inflamed before they atrophy. Maybe yours aren't too damaged yet, 'just' inflamed. by eating gluten-free you might be able to prevent more damage.

I say if you are having intestinal redness and celiac disease symptoms, and the diet helps you feel better, you likely have your answer already. Keep up the good work. And yes, not eating gluten for two weeks before your blood test could have resulted in a false negative.

missy'smom Collaborator
missy'smom
Posted

Welcome. If you have the gene then celiac disease can remain inactive until some event or physical or emotional trauma triggers it. For me, it was pregnancy. For my sister, it was surgery.

Guest lorlyn
Guest lorlyn
Posted

Hi and just wanted to say welcome :rolleyes:

When my 10 year old daughter had her biopsy the doctor told us after that he thought every thing looked fine, but after looking at it under a microscope he said that it was red at that was the sign of damage begining. She now has been gluten free for almost 8 months. It has ben hard on her but it has got much easier. Since she reads post her it has helped her learn alot in a short time. She can remember ingrediants better than I can. just hang in there and take care of yourself so you can feel better soon.

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debmidge Rising Star
debmidge
Posted

Hi and welcome to the board.

Just wanted to say that my husband was 27 years old when he first was hit by celiac but it took doctors 27 years after that to make a correct diagnosis. I also know of a good number of others whose symptoms started or gene triggered after childhood.

GeoffCJ Enthusiast
GeoffCJ
Posted

I had symptoms starting in college (18-19) and was not diagnosed until 31. I was diagnosed "officially" but I remembering saying to my doctor, "you know, I feel so much better off gluten that you'll have to come up witha pretty convincing reason to start eating it again."

Dietary response is a solid test. If your feet hurt, and you realize it's because you're standing on a tack, do you need a dr to tell you to stop standing on tacks? Of course, it doesn't hurt to get tested. I like information, and tests are information, but none are perfect.

Search for Noglugirl. She periodically posts a list of "common" foods that are gluten free. Also, some better grocery stores will give you a list of gluten-free foods they carry.

Geoff

Special K Newbie
Special K
Posted
  • Author

Thanks you guys. I'm a college student too and it's really difficult for me. It's actually really nice to know there's other people out there going through what I am. No I haven't had any biopsies she doesn't think I need it. I'll just continue what I'm doing staying away from wheat.

Thanks again,

GeoffCJ Enthusiast
GeoffCJ
Posted
Thanks you guys. I'm a college student too and it's really difficult for me. It's actually really nice to know there's other people out there going through what I am. No I haven't had any biopsies she doesn't think I need it. I'll just continue what I'm doing staying away from wheat.

Thanks again,

Remember, if it's gluten that is a problem, wheat avoidence isn't sufficient. Wheat is perhaps the most common source of gluten, but gluten is found in other things too.

Check out the Safe/Not Safe ingredient lists on this site.

Geoff

Ursa Major Collaborator
Ursa Major
Posted
I'll just continue what I'm doing staying away from wheat.

Gluten is in wheat, rye, barley and triticale (a hybrid of wheat and rye), and in oats because of a contamination issue. So, if you only eliminated wheat you aren't really gluten-free yet.

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