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Self Diagnosed Stalker Thanks You


eeyorelvr

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eeyorelvr Newbie

Hi,

I am new here, but have a confession to make; I have been lurking/stalking for almost a year.

This board has been SO extremely helpful, I feel like I already have a lot of what I need to begin this huge journey, and I thank each of you for that. Hopefully in all my research I will find something to help someone else. Here is my long boring story.

All my life I have had


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Lisa Mentor

WELCOME! I love it when the lurkers come out!

ranger Enthusiast

I was a lurker for a long time, too, so welcome. If not for this forum, I would still be very ill so a big THANK YOU to everyone. It just keeps getting better, and I hope it will for you.

The Fluffy Assassin Enthusiast
My biggest challenge will be bread and eating out.

A bread suggestion: soft corn tortillas. My lunch every day is various things wrapped in soft corn tortillas. Cheesesteaks, turkey and pepperjack, spinach casserole. Awesome and versatile. They're a little more flexible if heated slightly, five minutes in the oven or say 20 seconds in a microwave.

As to restaurants, Outback and Bonefish Grill are reliable. Other chains also have gluten-free menus, but ownership of these two (same ownership) are more committed.

Good luck to you, and welcome!

JamMama Newbie

I, too have been looking on here. I haven't been officially diagnosed - and am not sure I even want to spend the $. I have no insurance and am a volunteer missionary overseas. I am so similar to some of you - I am also lactose intolerant and the lactaid doesn't help a bit. I can tolerate some yogurts. I have lost 17 lbs. since February and started eliminating foods after it seemed everything I ate caused bloating, severe cramps, gas, and diarrhea. As soon as I stopped wheat products I improved drastically. When I saw a GI doctor in US she suggested celiac. I stopped eating wheat a couple of months ago, but would need to start eating it again to get an accurate test. I don't beleive it's worth it to start back on it. I'm in agony for a few days if I even cheat on any small item which could possibly have gluten. I'm now convinced I have celiac - even though I don't want to be a hypochondriac. There is good and bad to living in a 3rd world country of mainly blacks, I have no gluten-free options in the stores like a whole foods, but there are few additives in foods, either. I eat mainly fruits, veggies, and plain meat. I'm starving for carbs - so I eat lots of rice, potatoes, and yams. I'm still losing weight. Do any of you think it's worth it to eat wheat again to take a test that doesn't seem to be very accurate anyway?!?!?

ang1e0251 Contributor

I think that is a very personal decision and I wouldn't presume to make it for you. There are arguments on both sides of the issue that are valid. It is good to have baseline testing in case there could be another reason for your symptoms.

I personally chose not to do it. I would be too sick and I run my own business. I cannot be sick that long.I am also afraid of having a preexisting condition attached to my insurance. I felt the dietary response was sufficient to self diagnose. Later, if I choose, I could have the genetic test. AT this point I am content to stay gluten-free and feel better than I have in probably 25 years.

JamMama Newbie
I think that is a very personal decision and I wouldn't presume to make it for you. There are arguments on both sides of the issue that are valid. It is good to have baseline testing in case there could be another reason for your symptoms.

I personally chose not to do it. I would be too sick and I run my own business. I cannot be sick that long.I am also afraid of having a preexisting condition attached to my insurance. I felt the dietary response was sufficient to self diagnose. Later, if I choose, I could have the genetic test. AT this point I am content to stay gluten-free and feel better than I have in probably 25 years.

Thanks for sharing your story.


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mysecretcurse Contributor

Thanks for sharing. You sound like an almost identical case to my brother. He has been having problems for a long time (Colitis) which I strongly suspect has to do with gluten, as he has a lot of similar health problems to myself such as being VERY skinny, skin problems, stomach problems, etc. But he still is chowing down the gluten since he tested negative for celiac. It's upsetting to me because I suspect that he still could be being killed by the gluten he's eating but the doctors just give him a green light. I also have never been tested "officially" but would personally NEVER eat gluten again to be tested. No way. It makes me far too ill, in fact I feel I might even die if I ate it, because I've become more sensitive since giving it up.

I went through enough of a "test" on my own. Sometimes I worried that it might be psycho-sematic (sp?) but one day I grew extremely ill and we didn't know what was wrong, I almost had to be taken to the ER it was so bad. We later looked at a package of some frozen meat that I had eaten the night before (someone else got it for me and since I had just started eating meat again after being vegetarian for years, I assumed at the time that all meat was gluten free) and it said in big letters: Contains WHEAT. Ugh. But it was sort of good because I was well into a violent reaction before even having any clue I'd eaten gluten and that confirmed it 100% for me.

Thank God for these forums. They have helped me so much on my journey!

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