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Hi From Me

wwebby

By wwebby
in Coping with Celiac Disease

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wwebby Apprentice
wwebby
Posted

Hi everyone, I haven't visited this board in a year because I started to deny that I had a gluten problem last year and started eating gluten again. I even had Enterolab tests done last year and was positive for everything, so I don't know why I can't convince myself to stay gluten-free. I realized that I was doubting my own "self-diagnosis" and decided to go to a "real" gastroenterologist for the full Celiac blood panel and possibly an endoscopy. I guess I want the "real" diagnosis to get myself more committed to gluten-free and to make it easier to say to my friends and family that yes, I did go to a "real" doctor. I hate how people doubt this disease. And I hate how people call it an allergy! I am eating gluten right now because of the testing coming up, so my friend and I got a pizza last night and I said, "well, I have to eat some because I'm getting retested," and she said, "oh, yeah. I forgot about your little allergy." UGH! LITTLE ALLERGY??? But you know, I was the same way 10 years ago. I didn't understand why people couldn't have peanut butter from a jar that had bread crumbs in it. It seemed paranoid to me, but now I know better.

Anyway, I'm tired and cranky and gassy and itchy because of all the gluten I ate yesterday. I see the doc on the 29th. I wish they'd consider celiac testing an "emergency" and test us sooner than the weeks and weeks they make us wait--and eat gluten!

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Guest jhmom
Guest jhmom
Posted

Hi wwebby (((((((hugs))))))))) to you!

I could not imagine eating gluten, even the slightest bit sends me to the moon! :( You poor thing, I do hope the testing is right around the corner and that you will not have to eat gluten much longer. BUT remember an improvement on a gluten-free diet is also a good test, even some docs will tell you that!

Hang in there and get better soon! :D

kejohe Apprentice
kejohe
Posted

I second that, my son had positive blodd test and complete recovery on the gluten-free diet, so his doc decided the biopsy wasn't necessary and I am very thankful. I wholeheartedly believe that recovery on the diet is the biggest indicator for diagnosis there is.

Feel better soon!

plantime Contributor
plantime
Posted
your little allergy."  UGH!  LITTLE ALLERGY??? 

I had a woman call it "a little sensitivity" and tell me that eating whole wheat 4 or 5 times a day would cure it. A man kept trying to tell me that I could just take shots for it! I hope those people do not have to learn about it the hard way!

Guest gillian502
Guest gillian502
Posted

I agree with the annoyance of having a serious auto-immune disease mislabled as an "allergy." I try to calmly explain to people that the difference between an allergy and an auto-immune disease is: when you ingest something you're allergic to, your body attacks what you've just ingested. When you ingest something and you have an auto-immune disease, your body attacks ITSELF. That is the very nature of auto-immune. It drives me crazy that people can't at least be respectful of things even if they don't fully understand them!

terri Contributor
terri
Posted

I'm traveling this week and all meals are being eaten in a restaurant. The servers and chefs have bent over backward to accomodate me and I haven't gotten sick at all. Yet. But, I am nervous about it.

mannabbe Newbie
mannabbe
Posted

Gillian,

I agree with your statements about "allergy" not representing our auto-immune condition - but what out Terri, who is eating out in restaurants all week? That's where the rubber hits the road for me - what do I say in a restaurant? My experience is that restaurant staff snap to attention when they hear the word "allergy" and that "gluten intolerance" and (rather controversially) "gluten allergy" are the operative words in the restaurant world.

If any of you have had experience making the whole "eating out" scene work in other ways, I would love to hear about it.

Terri, I just survived 10 days away from home and (miraculously!) returned home well. Yet another disaster averted - at least that's how it feels.

Laurie

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terri Contributor
terri
Posted

The restaurants here in Seattle have been incredible! I have my gluten free dining card which I laminated at Kinkos and last night the chef came to my table 4 times! They usually poach my salmon as that requires a special pan, and give me veggies and a salad. Last night the chef fried me some potatos and onions in the same pan as he backed my fish. For breakfast I've been ordering egg white omelets as that gets cooked in a pan and not a grill. Hard boiled eggs and fruit have worked out fine. Lunch has been the very hardest. Usually a salad with whatever grilled meat that is cooked over a flame that they have. I think I've lost 3 or 4 pounds this week though. Oh well, I'll have fun putting it on at home. Everyone feels sorry for me but they don't understand. I feel great! For the first time in years!! I've been gluten-free for 3 weeks now and what a difference!!!!!

mannabbe Newbie
mannabbe
Posted

Terri,

I live in Seattle - and I'd love to know the name of the restaurant you went to where the chef came to your table 4 times! I highly recommend Wild Ginger downtown - the majority of their menu is either already gluten free, or can easily be made gluten free. Also, try to make time for a trip to Flying Apron Bakery in the U District. You won't believe their gluten-free, vegan chocolate cupcakes.

happy travels, Laurie

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