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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.

Dietician Not A Lot Of Help
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11 posts in this topic

Hi everyone!

I was just diagnosed with celiac a little over a month ago. I have been reading this site and these boards. I've received a lot of good info.

I finally got an appt. to see a dietician today. I was excited, as she was celiac, also and thought I'd get a lot of help. But, I knew almost everything I needed to know! Sad part is, I have to pay, so got little for my money. I did get a couple of tips, and lots of handouts, so not all is wasted.

I've been so tired lately, but not sick, usually. She couldn't exactly tell me why. I think I don't have bad symptoms, so only feel tired and a bit down sometimes. The weekends, with family doings, are getting me down. Too many challenges, foodwise.

Then I get home and find my bone density test results in the mail. I am just 56, and have indications of osteoporosis and osteopenia! Talk about a bummer! I need to go back to see the Dr. Will call tomorrow for an appt.

Anyway, I wanted to thank everyone here, as I've gotten such good help from everyone! This is where I've learned more, than from any other source! Thanks!!!

Nita

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Hi NitaB,

I just read your post. I was diagnosed last August and have seen a nutritionist twice (December and March). At my first visit, I realized that I knew virtually as much as her. In fact, she said she didn't know what she could help me with. Of course, she made me eat more grain, since I had been avoiding it. I gained 12 pounds (IN A MONTH!) as a result. (after having just lost about 17). I was so upset and started feeling ill. I had stomach pains and got mouth sores. I ended up doing a very strict PALEO DIET for about a month to calm down my body and lose the weight. I have never felt so good in my life. When I went back to see her, I had lost the 12 I gained plus many more. I have now dropped 35 pounds total since August, but don't eat strict paleo anymore. However, when I eat gluten-free grains, I get tired and weak and don't feel well. I have discovered that eating meat, root veggies and fruits is the only answer to feel 100% well.

Right now, my mouth and tongue are covered in sores because I indulged in gluten-free goodies in Canada and got sick once from a restaurant. I was there two weeks and never went a day without a stomach ache. IT was intense pain - like I was barely able to breathe. I was eating ONLY gluten-free foods and basic meat and veggies, so i am not sure where the contamination came from. (I was cooking for myself, but had to share cooking area with wheat-eaters.) I am heading out of town again for 6 weeks, but will have my own kitchen, so I think this will be better.

I have been doing strict PALEO again for the past three days and my stomach feels so much better.

kathleen

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I saw a dietician after my diagnosis and she was really lame. She only told me what I already knew and gave me some handouts that were outdated by about 4 years. What a waste of time that was. I got most of my info off of the web and this website. Dieticians of the world get a clue, you need to update most of your info at least every year, maybe more often. Shirley

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I also saw one after my diagnosis. She too was not educated on Celiac Disease. She had gone and printed information off of Celiac.com to give to me, which I had already read!! Then proceeded to talk to me about how much juice is in a serving and how much veggies are in a serving.....LADY I"M NOT HERE FOR THAT!! I'm here to learn how to eat now that my life has been turned upside down!! I agree with Shirly.....they need to get a clue!! I think they need to take classes and learn how to help people like us. It amazes me how little they know about it.

My trip wasn't paid for by insurance and was a TOTAL waste of money.

-Jessica :rolleyes:

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I agree. I went to a "specialist" dietician at Johns Hopkins here in Maryland, and it was a total waste of time. The only way to really follow this diet is to learn all about it ourselves!

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Thanks everyone!

I have to pay for my visit also. They turned it in to insurance, just so the insurance company would know there is a need for this. I would be paying $87 for 50 minutes, but was there at least 80 minutes! I shudder to think what it'll cost me, when the insurance dosen't pay!

Even though this dietician was celiac, she would only be much help to someone without a computer, library, or too lazy to find out on their own! Some of the handouts she gave me, were from this site, also! I had already printed them out, to use as reference.

I did get an appt. with my Dr. for tomorrow. It's to discuss the osteoporosis. But, I want to ask her some other questions, too. I wish I knew what caused me to be so tired sometimes. And foggy brained! Any ideas, anyone??? Is it just this disease? I swear I haven't always been this way! :)

Nita

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Hi,

I apologize if anyone finds this a bit harsh, but nutritionists are usually a waste. I did a ton of research after being diagnosed and nearly everything the nutritionist said was stuff I had already heard. The handouts weren't very helpful and were repeats of everything I already knew. And, this was Anne Lee, the nutritionist that works with the most famous Celiac doctor in the US, maybe the world, Dr. Green! So it's not just that I got a cr*ppy nutritionist, or something.

I guess a nutrionist might be helpful for somebody who was just diagnosed, hasn't researched, and knows nothing of the gluten-free diet. It wasn't for me -- especially since I was weeks in and already knew all this :rolleyes: ....frustrating.

I only found out one thing from the nutritionist that some parents might find helpful if they have Celiac kids who don't like their veggies....V8 Splash is gluten-free...all flavors...or so she said. It's a good supplement that actually tastes pretty good -- I tried it....whatever....this board IS indeed the most helpful for ideas.

-celiac3270

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We had the same neutral experience at nutritionist. From the date of the diagnosis to the date of the nutritionist's appt. we already knew everything she told us due to our own investigation at library and internet.

If I were a nutritionist/dietian I'd have an updated CSA Gluten Free product listing manual to show the patient that it exists, I'd have sample copies of other publications, like the Hagman cook books, some receipes, names and locations of stores that sell gluten-free food (like Whole Foods); website list of info spots and gluten-free supplies. Tips on how to keep kitchen from getting cross contaminated. Discuss the oats controversy. Tips on how to eat out at restaurants etc. List of nearby support groups.

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celiac3270 and Debmidge,

Thanks for your comments! I hope it'll help someone else. There may have been discussion of this somewhere before, but if so, I missed it! And I agree, they could help a real newbie, who hasn't done a speck of research! So, it was an expensive appt. for me!

I did get a couple of ideas for eating out in this area. That is worth something, at least. One pizza place makes gluten-free pizza, due to the mother being celiac. It's 12 miles from here into town, but may be worth it someday! :rolleyes: I will try someday when I'm in town, to call ahead to order.

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I agree that many nutritionists and other professionals are not as helpful as they can be. The usual story of an uneducated doctor that wasted years looking in the wrong place happened in our family, including hinting that the parenting was at fault.

Stanford in California has a wonderful program for Celiacs. They send each person home with tons of information on celiac disease and the day after you get your results they have someone else who has celiac disease or a family member with celiac disease call you offering to help.

Perhaps those of you who haven't had a good expericence can let your doctor know about celiac disease by dropping off Celiac information and offering to mentor someone who is new to celiac disease. I came across a web site sometime back that offered to send packets to doctors, but I haven't been able to get back to it.

DK

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DK-

I believe that CSA sends packets out to Dr's. I think they do it once a year during Celiac Awareness Month.

-Jessica

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