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Just Joined, Fiance Diagnosed With Celiac


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10 replies to this topic

#1 tannilisa

 
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Posted 09 September 2004 - 06:28 PM

Hi, I just now found this message board after doing a search and I'm glad I found this :) My fiance, soon to be husband next month, was diagnosed with celiac yesterday, I went with him to his new GI doctor after a blood test came out postive for celiac. His mother was also diagnosed last year and has severe osteoporosis, she is 63 yrs. old, so she was diagnosed later in life. I suspected he had the same thing after bouts of diarrhea and he would get stomach bloating, gas, and pains, so he finally told his doctor about his mother having it, and that's when they ran the test. His doctor is exellent, and he himself has celiac, we were in the office for an hour, his wife is also a doctor and works with him, she teaches how to cook for celiacs and told us where to go for gluten free food, they went through everything with us and gave us a information packet with allowed foods, and not allowed foods. It's all a bit overwhelming and confusing and I have no idea where to start, it's certainly going to be a challenge starting this gluten free diet :blink: The good thing is that he doesn't really like pasta, breads, sweets or pastries anyway so that will be easy, the hard part will be all the hidden gluten in foods and cross contamination in resteraunts, he's now afraid to eat out. I wanted to get more info. about how to cope while eating out, and also what spices are safe and which ones are not? Thanks for any info :)

Tanya
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#2 debmidge

 
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Posted 10 September 2004 - 02:02 AM

Tanya, You've come to the right place. Everyone who is on this board gives of their experience and knowledge freely.

My husband was just diagnosed almost a year ago and it's a whole new world. He had raging symptoms for years and doctors mis diagnosed as IBS for 27 years. He has yet to eat in a restaurant yet because he still can't get his symptoms fully gone. Your fiance might be different. I suggest your review the posts under Restaurants.

Most of the info you need will come from the manufacturers themselves. I've been calling them all year to verify if something is gluten free or not. The vague answer is "This product is made in a plant that also handles gluten products, so we can't guarantee that this particular product isn't cross contaminated."

The Celiac Sprue Assoc. (www.csaceliacs.org) puts out an annual manual that provides info on mainstream foods and if they are gluten free. It costs about $30 and you can download an order form at their site. It's in a binder book.

There are other gluten free lists and you will notice that other members of this board have posted their websites in other sections of this entire board site. Take a hour or so to review the posts in the Ingredients board and Coping board. It's worth the time.

Best wishes.

D.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#3 Guest_Lindam_*

 
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Posted 10 September 2004 - 03:18 AM

Hi Tanya,

Welcome to the most wonderful site! I was diagnosed in March '04 and my head was spinning. I didn't know where to start. The best place is this forum. Everyone hear speaks from experience and have so much knowledge. Within this forum there is also the food lists that are mainstream. If you go the main page, site index, the third or fourth listing is the foods that we can eat. That was great big help to me. I have not yet gone out to eat yet. I am still very scared that I will get sick. But if you want, here is the link to go to a website that you can download restaurant cards. I printed them out a bright colored paper and then laminated them. If you go to http://www.glutenfre...s.org/print.php and on the left side of the screen there is an icon for restaurant cards. I hope this helps. This way I can give it to the wait person and the chef can see it without ruining it.
I printed a bunch of these out and gave some to my GI doctor who was so grateful.

May I also add that the best support that I get is from my family and friends. This is a learning experience to me as well as them.

I wish you all the best.

Good luck!

Linda
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#4 lovegrov

 
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Posted 10 September 2004 - 05:31 AM

If you decide to get that CSA book I'd wait a month or two. I think the one out now is almost a year old.

You might also check out this place:

http://forums.delphi...om/celiac/start

This is another forum you can join. Or you can pick up info (but not post) as a guest. If you scroll down the start page you'll find Celiac & Forum FAQs. Go there and scroll down and you'll find all kinds of helpful documents, including places to look for hidden gluten and contamination and a list of the companies that clearly list gluten in ingredients. All you have to do is read the label.

You'll also find a gluten free product list maintained by members of the forum. Some of the listings are old but many are fairly recent.

If your fiance was just diagnosed he really shouldn't go out to eat for a while. Eating out is VERY risky, even at the best places. He needs to heal and get used to how to handle the diet first. Eat fresh meat, vegetables and fruit for a while.

The social part of celiac is always a challenge (though certainly not impossible) but shopping and eating at home becomes a breeze.

richard
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#5 tannilisa

 
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Posted 10 September 2004 - 07:01 AM

Thanks a bunch for your replies :D last night was his first gluten free night, which he didn't mind at all, he loves rice and meat and salads with oil and vinagar, we probably won't be out to eat for awhile until he gets used to the diet at home, his mom is still having a time with the diet, but is getting better at it, she has a bunch of cookbooks that she's gonna let us borrow. I also was tested last month for celiac, because of severe digestive problems, they thought I had crohn's, but the colonoscopy came out negative. I haven't heard anything yet, so I'm assuming the test came out ok (I hope!). Thanks again for your info, it's a big help and much appriciated :)

-Tanya
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#6 jendenise

 
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Posted 10 September 2004 - 09:23 AM

You mentioned that you are getting married next month. Have you thought about a little gluten free bride & groom cake so that you two can still do the slicing of the cake and all that good wedding stuff? If you can't find a baker who can help you, you may want to start experimenting and try to make your own. Maybe the cake decorator can still decorate it if you explain the situation, just let them know that cross contamination is an issue. Also, let your fiancee know that malted drinks (beer for example) are no no's too. If you find that your wedding menu doesn't offer anything for your fiancee to eat you might want to go online to amys.com or glutensolutions.com, or glutenfreemall.com and maybe order something that's microwaveable or easy to prepare for him. Good luck, I hope you have a beautiful wedding.
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#7 tannilisa

 
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Posted 10 September 2004 - 09:27 AM

Yup, we're getting married next month on the 9th :D luckily, my fiance's mother is a professional cake maker/decorator, so she'll be doing ours, and she has all the ingredients for a really tasty gluten free cake :P we really lucked out! Thanks for the wedding wishes! :)

-Tanya
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#8 jendenise

 
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Posted 10 September 2004 - 09:43 AM

Wow, that's great! My fiancee and I have been putting off getting married because we're opening a new business and we just moved, and all the fun stuff that goes with it. But maybe you could give me some info about your mother in law and where she's at (I'm in Las Vegas) and when we finally decide to get married maybe I could contact her???It would be great to be able to fully trust someone else regarding food preparation for our wedding.
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#9 wifeofceliac

 
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Posted 12 October 2004 - 06:06 AM

I noticed in your posting that you mentioned that your fiance likes his salads with oil and vinegar. My husband is a celiac, and I was told that the only vinegar that he can have is apple cider vinegar. Is this true? When you're not allowed to have viniegar it limits alot of items. Maybe I was mislead, we've been doing without vinegar for about 2 years now. Some advise please. Or do you make your dressing with apple cider vinegar?

Thanks,
Dana
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#10 crc0622

 
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Posted 19 October 2004 - 07:31 AM

Tanya - how did they test you for celiac? You mentioned a colonoscopy for crohn's but you'll need very specific blood tests and/or an endoscopy for celiac.

Dana - he can have any distilled vinegar. The only big no-no is any malt vinegar, as it is made from barley.

Hope this helps!
Celeste
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#11 Guest_DaiseeLove_*

 
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Posted 19 October 2004 - 10:53 AM

Hi, I just now found this message board after doing a search and I'm glad I found this :) My fiance, soon to be husband next month, was diagnosed with celiac yesterday, I went with him to his new GI doctor after a blood test came out postive for celiac. His mother was also diagnosed last year and has severe osteoporosis, she is 63 yrs. old, so she was diagnosed later in life. I suspected he had the same thing after bouts of diarrhea and he would get stomach bloating, gas, and pains, so he finally told his doctor about his mother having it, and that's when they ran the test. His doctor is exellent, and he himself has celiac, we were in the office for an hour, his wife is also a doctor and works with him, she teaches how to cook for celiacs and told us where to go for gluten free food, they went through everything with us and gave us a information packet with allowed foods, and not allowed foods. It's all a bit overwhelming and confusing and I have no idea where to start, it's certainly going to be a challenge starting this gluten free diet :blink: The good thing is that he doesn't really like pasta, breads, sweets or pastries anyway so that will be easy, the hard part will be all the hidden gluten in foods and cross contamination in resteraunts, he's now afraid to eat out. I wanted to get more info. about how to cope while eating out, and also what spices are safe and which ones are not? Thanks for any info :)

Tanya

Hi, welcome to the forum; I'm new here too. I hope your fiance is doing well. I was recently diagnosed and it HAS been difficult.I, too, am engaged: much luck to you both!! :-)
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