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Just Joined, Fiance Diagnosed With Celiac
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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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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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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.glutenfreerestaurants.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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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.delphiforums.com/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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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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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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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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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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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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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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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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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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