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Freaking Out
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I went for my first doctor appointment in 7 years five days ago. I talked to my doctor about depression/anxiety, irritability, weight loss (60 lbs in 6 months) I had quit drinking soda bc i believed it was bloating me and making me gassy but it didn't really help. Also talked about me believing I was anemic due to my addiction to ice. He told me he wanted to run some blood tests for the anemia and possibly thyroid. Well he also tested me for celiac and I got the call yesterday that I had tested positively for celiac and I was anemic and had a vitamin D deficiancy. They are setting me up an appointment with a GI doctor. After reading up on the symptoms it all makes sense, but I am still scared about how big of a change this will be. I am 25 and a mother of three. My husband doesn't think it is a big deal but this is serious right? I should be freaking out a little right? Also, should my children get tested? Just need some comfort I guess.

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No reason to freak out. This condition is a lot easier to manage than others.

Yes, it is serious. But don't start the diet until after all of your testing is done.

Yes, your children need to be tested as this condition is genetic.

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I was scared of the possibility too at first, after all the research I did I realized it is such an easy disease to manage. To begin with you don't have to rely on doctors and medication, you cure yourself, naturally. I say cure because all symptoms and associated risks of celiac are diminished once clearing the body of gluten and your intestines heal. Also, gluten is a lot easier to avoid than you think, you can still drink all liquor, most wines and some beer, 5 of the 6 food groups are naturally gluten free and many restaurants and food chains are starting to adapt to gluten free with employees trained on cross contamination. If we were in the 80's I would be a bit more frightened but the world is now opening its eyes to celiac and the gluten free world.

Really, if you had to have any disease on this planet I would say celiac or hypothyroidism would be the top two for easiest to manage and smallest risks of other issues. Celiac is serious as in it's a disease however as for as diseases go it is not serious at all (once treated).

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your doc is a keeper!

Yes! And you had answers right away!
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I was diagnosed in February and it was quite a surprise to me as well. For me it felt both daunting and overwhelming in the beginning, but it does get better.

The newbie section of this forum has a lot of good information to get you started. It is probably worth having your husband read some of the information as well - the path will be a bit easier to navigate if he is there to support you. (My boyfriend was a bit skeptical at first as well, but it didn't take long before he was on board and now is always looking out for me).

It is a learning process, but will get easier with time...hang in there!!

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Thanks everyone!! I know that it is manageable but I work in a grocery store that isn't gluten friendly and I was randomly checking items and just about everything I checked contained some sort of gluten. It is just a big life change I guess. I have already decided that I will be fighting for more gluten free options in my store.

And also my doctor is great!! It is actually funny but my original doctor had left suddenly so the office distributed me to him. It was like God sent me to him!!

I go Thursday to the GI doctor so wish me luck!!

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... It was like God sent me to him!!

...

Well maybe he did! :)

Do stay with eating gluten until your testing completed. Here's some tips for when you do start the gluten-free diet.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non-celiac wheat sensitivity article

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

Super Easy Meal Ideas Anyone?

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As you change the way you cook and prepare food, your entire family will benefit - they will be eating healthier too!

Get your children tested as soon as possible - even if there are no symptoms. Don't mess with their diets at all until testing is done.

The diet takes a bit of learning at first, but once you figure out your favorite foods and alter your favorite recipes, it is really not that hard. You will soon be feeling so much better - it will be worth the hassle.

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Met with my GI doctor yesterday!! He looked at my bloodwork after introducing himself and said "very interesting. I just met you and you are already a very interesting patient." He said he was 90% sure I had celiac sprue but wanted confirm before changing my life. I go January 8th for my endo. If confirmed he is going to send me to a nutritionist. I'm so happy that my doctors have taken charge!! Thanks for all the advice!

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Met with my GI doctor yesterday!! He looked at my bloodwork after introducing himself and said "very interesting. I just met you and you are already a very interesting patient." He said he was 90% sure I had celiac sprue but wanted confirm before changing my life. I go January 8th for my endo. If confirmed he is going to send me to a nutritionist. I'm so happy that my doctors have taken charge!! Thanks for all the advice!

Just my 2 cents.....if your biopsy is negative, please consider going gluten free anyway. Biopsies are very unreliable, and false negative results are very common. With your positive symptoms and bloodwork, you should not be consuming gluten. GI docs put WAY too much emphasis on that biopsy. You should also request genetic testing to see if you have the genes. If you do, your kids need to be tested as well.

Good luck!

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I agree. While a positive biopsy will indeed "comfirm" the diagnosis, a negative biopsy does NOT mean you don't have it. Don't let the doctor tell you otherwise. With your symptoms and blood test results, it is pretty obvious you should not be eating gluten.

Cara

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    • Thanks.  This is very helpful.  Our first post diagnosis grocery store trip took several hours, just trying to read labels to make sure everything is safe.   Our son loves bread and this going to be the hardest part. 
    • i would agree with most of your assessment but overall the popular chefs are very aware. Ed Kenny at Town did have  gluten-free options on the menu.  Mavro's will fix something special given advance notice but its expensive.  excellent but very expensive.  Alan Wong is very aware and will have his staff prepare something as well.  We did find many options at both Oahu  whole foods -- mostly  with tofu. the only thing  there is to be aware of cross contamination with things  next to it.  they make a great gluten-free southwestern tofo dish which is great but not if its sitting next to anything with gluten. Its not whole foods but people use the smae  spoons and tongs i found more at   down to earth in peal city than by  University ave  
    • Hi,  I'm in KOna but my kaiser doctor just retired  who was pretty good about it. I dont know of a specialist here  but most of hte kaiser docs wil test you if thats when you need to talk to them about. good luck  
    • Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc  
    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
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