Yet Another Newly Diagnosed Celiac

[BamBam]

I am also self diagnosed - I welcome IANM and JUNEVARN to the boards. I felt somewhat alone not knowing very many other people that are self diagnosed.

I also share the same story, doctors were of no help to me whatsoever, I learned through a friend about wheat intolerance, but had no understanding the true meaning of it all. Then I found Celiac.com. What a difference. Shopping has become easier and we do not eat out as much, when I do I stick strickly with steak and a plain baked potatoe.

I refuse to spend thousands of dollars on tests when I know I already feel better. And not all tests are positive or negative - there are false positives and stuff that I just do not understand.

Last evening I had a major upset. I ate some corn tortilla chips on an empty stomach. The yellow corn chips hurt me bad, but the white corn chips do not, so I think I am a little corn sensitive, at least on an empty stomach.

Again, welcome to the boards and share with us as you get happier and healthier.

bambam

[junevarn]

Hi all,

Thank you again for your support. BamBam, Its good to know that I'm not the only self diagnosed celiac here. I do consider myself that because I do have the DQ-2 gene and I'm sure I had some of my villi affected due to my high fecal fat score through Enterolab and the other positive antibodies. (MY score was 288 and damage is supposed to take place with a score of 300. Close enough for me.) I also feel much better since being gluten and dairy free. I was intolerant to casein as well.

I am very happy today. I have been missing really good bread. There is a coffee shop on the street where my husband works which is owned by a celiac. They sell gluten free goodies and bread. They sell a u-bake bread which I have tried which is pretty good but yesterday my husband brought home a foccacia bread which is out of this world!! I have had it at every meal today. (IT is pretty big). I wouldn't know that it is gluten free. Its funny how something like that can make my whole day!

Thanks for listening.

Sincerely,

June

[junevarn]

Hi all,

I made a mistake. I have the DQ-8 gene, not 2. Brain freeze! Anyway its one of the main ones for celiac. I have no use for most MDs, especially ones who send their patients to psychiatrists because of the lack of their own knowledge!!!

I too am not willing to go through uncomfortable tests that may or not turn out positive when I know the reaction of my own body. This is the only thing that makes sense with all of my symptoms, especially the vomiting and diarrhea and anxiety. It always happened after I ate.

Talk to you all soon.

June

[burdee]

I also self-diagnosed after reading a newspaper article about celiac disease which described MY symptoms. Fortunately I had a friend whose husband had been diagnosed 6 years before. So she was my mentor and told me what to eat and avoid. I initially wanted a doc to do tests. My own doc had misdiagnosed my symptoms as "IBS" for 8 years. So I went to a naturopath 4 days later (when I thought I would still have some gluten antibodies to test). He then discouraged me from spending money on tests and just stay on the gluten-free diet. However, when I STILL had symptoms a couple of months later, I did tests through Enterolab which diagnosed my CASEIN as well as GLUTEN intolerance and my celiac gene. Then I self diagnosed soy intolerance when I tried to substitute soy products for dairy and got the same symptoms. Although I kinda' self diagnosed gluten intolerance I'm REALLY glad I did Elab tests which indicated casein intolerance. Eliminating casein eliminated the symptoms that mere gluten avoidance did not resolve.

BURDEE

[pmrowley]

Wow, lots of stuff going on here. I can't remember 6 pages of stuff, but I'll hit on the things that strike me (after dealing with celiac disease myself for 25 years:)

Yes, being diagnosed with celiac disease is a life-changing event. It's also a life-saving event. Personally, I don't really see the need for a full diagnoses in some cases; if you feel better on a gluten-free diet, why go back? (You're not doing yourself any harm, and you could be doing yourself a world of good!)

One of the keys to making this successful is to get the family involved in the diet. My wife, who is NOT a celiac, shares the majority of my diet. She does have her own bread, and a dedicated toaster. When we go out, she'll have the bread that's given at the table, and she'll generally order whatever she likes from the menu. However, the rest of the time at home, we prepare gluten-free meals if they're to be shared. Nowadays, there are so many gluten-free items that are just as good, if not healthier, than the "regular" foods. gluten-free pastas are usually made with whole gluten-free grains, etc. Keep in mind that gluten is toxic to EVERYONE. We're just far more sensitive than most people. My non-celiac disease wife feels healthier now that she shares my diet, and tends to stick to it more and more, even at restaurants.

Remember, there is no "cheating" this diet. Do or do not. There is no try. Accidents happen, but they should be reduced as much as possible. Never exacerbate the condition by "falling off the wagon" more. You'll be miserable, and unhealthy.

gluten-free Beer: In the UK, you have HARD CIDER ON TAP!!! Do you know how lucky you are??? Forget beer. Strongbow Cider is the best ever. Avoid Woodpecker and Hornsby's. They are NOT gluten-free. Wyder's, Woodchuck and Ace are all gluten-free.

More later, gotta hit the road.

-Pat

[Generic]

Hi all, I am also new to this board. However, I am all too familiar with celiac gluten free diet. I was diagnosed 17 years ago. I am truely amazed at how things have changed since that time. Back then, I was told only 1 in 2,500 people in the U.S. had celiac. I was 13 back then and it made me feel very isolated. The only products my mom was able to find was the Ener G brand. The bread tasted like dry sponges. I prefered peanut butter and jelly rice cakes sandwiches. Even when I did eat them at school, everyone asked what I was eating and why. No one had even heard of celiac. The mixes made very dry bland cookies etc. also.

It's so nice to see that more and more people are recognizing celiac and making products that are actually yummy. Not to mention all the recipes. I can't tell you how many times my mom or I would try and convert recipes and end up with a horrible failure. All the hard work would end up in the trash. Not to mention the cost of the alternative flours.

Thanks to all!

[gabrielle]

WH- Just wanted to let you know that General Mills Coco Puffs do contain gluten- the last ingredient is wheat starch. Sorry!

[mom]

When it comes to cereals off the shelf(in regular grocery stores) I stay away! It has to say gluten-free before I trust the contents. Beware of contamination when it comes to the grains in cereals.

Mom

[sneako]

"That which does not kill you makes you stronger." -- Friedrich Nietzsche

I disagree Gluten has not even threatened to kill me over the past few years, but nor has it made me stronger...Maybe eating too much gluten = celiac? Dunno, but I used to eat a loaf or so of bread a day.

[celiac3270]

I disagree Gluten has not even threatened to kill me over the past few years, but nor has it made me stronger...Maybe eating too much gluten = celiac? Dunno, but I used to eat a loaf or so of bread a day.

You don't have to agree--it's just some philosophical statement, about enduring hardships that don't kill you making you stronger. I think it's not the gluten that we're supposed to look at here, but the overall obstacle of celiac. If you conquer the obstacle and live a healthy gluten-free lifestyle, you're not only physically made stronger and better, but psychologically made stronger through having beaten what was at first a challenge to you.

And gluten would eventually have killed many of us; think of all of the long term implications of neglecting to follow this diet! (cancer being one).

[jerseyangel]

Hay celiac3270--Not only do I think that quote applies to our situation, if I hadn't seen it on your signiture, I would have used it on mine!