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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Freaking Out
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12 posts in this topic

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!

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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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    • Confused
      Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care. Read the research here: http://www.cureceliacdisease.org/screening/ Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.   Also, did your GP run a IGA deficiency test?  Do you have those results?   Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association. http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!   After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten. Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first!     
    • Could this possibly be related to celiac or a gluten intolerance?
      I too have more neuro than gastro symptoms...its so weird. I hope we both find answers soon!
    • Silent Celiac or Non-digestive symptoms
      My celiac diagnosis started with me seeking medical attention for an ongoing migraine problem. This lead to MRI's that showed white spots on my brain which lead to blood work that showed a positive ANA (1:640) and a trip to the rheumatologist. The rheumatologist suggested the biopsy and a referral to a GI specialist after he felt confident that I didn't have lupus. The funny thing is that I don't have severe tummy troubles. I have some bloating occasionally and gas along with differing bowel patterns but that's about it. The most annoying and troublesome symptoms for me are migraines, fatigue and sometimes I get a little achy. My results for the prometheus test were high, blood anti-bodies were present and my biopsy revealed Grade B2 villi damage (the worst classification according to Corazza, Roberts, Ensari). Anyway I guess what I am wondering is how long after being "glutened" will I have a migraine, vitamin deficiency or other neurological symptom so that I will know that I am in trouble? I feel like if I had the tummy trouble to go with this I would know when I have eaten something that has been cross-contaminated. I just want to heal soon and not risk further intestinal damage or lymphoma. Thanks for your reply!
    • ANA and Celiac
      Does anyone know if the positive ANA(1:640) I had back in January could be connected to my celiac diagnosis two weeks ago? Does ANA change with celiac or just other AI issues? Thanks!
    • Confused
      Hello,  I'm new to the forum and new to gluten/celiac. I had some abdominal discomfort a couple weeks ago and my doctor (Kaiser) at the last second said he'd also test my blood for gluten issues. Bottom line, last Sunday night i get the results which I didn't quite understand. TISSUE TRANSGLUTAMINASE IgG 1.06 Index <=0.90 Index Tissue transglutaminase IgA 0.91 Index <=0.90 Index Then i get an email from him saying you tested celiac positive, I'm referring you to a dietitian for a gluten free lifestyle (head exploded). After scouring the internet for days, I've read my fair share of good and bad celiac articles. Right now it seems like kaiser just wants me to go gluten-free which is fine if I have celiac disease, but I'm not sure what the numbers indicate or how bad they are, or how much potential damage has been done. Has anyone gone through a similar process? Do I need to ask for further tests?  I'm still in shock a bit I guess but really feel like I'm in the dark and reading everying on WebMD and other celiac sites gives me hope and crushes my dreams at the same time. By the way I'm 35 and male, if that matters.   Thanks
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