Hi, philid1973, and welcome to this forum of nice people. If your blood work came back positive, then I think that should be enough. If it had come back negative, then I might seek further testing and/or treatment. But that's just how I would handle it. Anyway, you might want to consider what 2 of my doctors told me, i.e., that if someone suspects gluten is a problem, they should take the "90-day challenge." That's when a person eats 100% gluten-free for 90 days, after which they reintroduce gluten. If their problems return and/or new ones develop, then that person should remain gluten-free for life.

I'm a little concerned that you must wait until January to see the dietitian, so here are a couple websites that can help you get started on a gluten-free lifestyle. The youtube video is long, but well worth watching.
http://glutenfreehomemaker.com/
http://www.celiac.com/
https://www.youtube.com/watch?v=cv5RwxYW8yA
https://celiac.org/live-gluten-free/glutenfreediet/sources-of-gluten/

Feel free to ask your questions here. We will try to help when possible. And, if you need recipes, there are many online. Pinterest is a good source, plus here is a link to the Sharing Our Gluten Free Recipes group on Daily Strength started by 22Lynn of this forum.
http://www.dailystrength.org/groups/sharing-our-gluten-free-recipes
Best wishes to you. Keep us informed of your progress.

I don't think a dietician can tell you anything you can't find out for yourself. Lots of good info on the web.

Also become a very careful label reader! I was astounded at some of my favorite foods contained gluten! Like would you believe Campbelles tomato soup!

It is very scary in the beginning. Gluten hides everywhere and you will need to go through your cupboards fridge and freezer and read all labels.

Now for the good news! Since more attention has come to celiac in recent years there are many more GF choices at the grocery stores and they are usually visibly marked with a little tag on the shelf.

My doctor seemed pretty clueless about it too. He said to just steer clear of noodles to be on the safe side and he gave me a epi pen. Honestly I had never heard of Celiac Disease before. I had been eating wheat and whole grain wheat my entire life and loving it. So this has been a huge shock to me. I do carry a bottle of Benedryles (antihistamine) with me everywhere I go. Wheat, gluten, barley and rye are in so many things. You have to be really careful. The stores have stuff that is safe for people with Celiac disease to eat.
I agree with the other lovely people who commented on your post. The internet is your best bet for finding out all about the Celiac Disease.
No, I don't think a Gi specialist is necessary. No follow up care is necessary. I don't think there is any additional testing that you need since the doctor told you that you have it.
You just have to read labels and be really careful what you put in and on your body. If you ever need to talk or just want to talk I am here for you.

Glad you are here. Yes - you need a GI doctor. IMO - learn everything you can so that you don't have to rely on someone who does not even know he is ignorant of the disease and protocol. I saw a dietitian and although she was a lovely woman, I knew more in researching the disease for a few weeks before my appointment than she did.

My son and I are celiac and I was floored when I asked his Dr to do follow up blood work about 6 months after diagnosis to make sure his iron, calcium, etc. levels were good and she looked at me like I was stupid and said, "Well if he is gluten free, everything should be fine and we don't need to do anything else." Frightening IMO.

I was diagnosed a few years ago and I am careful not to ingest gluten. Still - I have a GI doctor who checks periodically to make sure there is nothing else going on. I was a learning patient for my nurse practitioner but she stepped up to the plate and did her research. There is a protocol of tests to check other things you may not immediately think of. She had me go for a bone scan and several other tests for things that plague celiac people to make sure that there were no lurking and unseen issues hanging around because of my celiacs. I always thought my bones were super strong but quite a while without absorbing calcium made my bones weaker. I took pills and vitamins to help make sure I don't get osteoporosis. Normally, I am too young for a bone scan and I have absolutely no symptoms of anything being wrong. I am so glad she checked.

Also - I never was a health food nut although I ate what I thought was healthy (haha - lots of whole wheat!!!). I notice a difference if I juice kale, spinach, and other veggies and drink that in the morning. Easily absorbed nutrients are going to be your best friends.

You know you have celiacs, not a sensitivity so I respectfully disagree with nanny611. Don't reintroduce gluten if you know you have celiacs.

If you would like further info about what I have learned, feel free to msg me but know that I am not on the boards very often.

Philid, it could well be that your blood tests showed you as being negative for one or both of the two genes which are responsible for Celiac Disease. But positive for antibodies.

He should have told you this. That having neither of the genes you do not have Celiac Disease. Nor do the antibodies. If you have either one or both of the genes (you have to have both or one) he should then arrange for a biopsy. The biopsy is the Confirming test. the Blood tests may have showed up antiborides,but they do not count. but do not have Celaic Disease unless the biopsy is positive.

Yes would have a follow up. Not having Celiac Disease and going on a gluten free diet is not much fun.

Will tidy up what I have said. To have Celiac disease one needs (has to have) one or both of the genes and a positive biopsy. That is it.

Cherry

There really is no follow up care in the traditional sense. Going on a gluten free diet is the only medical treatment available.

At the start, it is generally best to eat only fresh meat, fresh veggies, and fresh fruits. These are all naturally gluten free. Give your body at least 6 to 12 months to really heal. Then add in processed GF products to see how you fare with small amounts of gluten.

I never regained the ability to digest lactose. I also worked with my primary doc to find an amount of oral vit D that keeps my levels just within normal. And I take a large amount of iron. So finding a doctor who will test for nutritional issues is frequently helpful. But when first diagnosed they are likely to be off anyway. Your body needs to heal that first year before you will know what parts of the villi wont really recover very well.

The researcher who found the genes and antibodies stated that positive blood work alone is sufficient. He developed the blood test because of the randomness of biopsy results. A doctor cant biopsy every spot! And the biopsies have to be done just right for pathology to find the villi damage. So he spent time finding a more accurate way to diagnose celiac.

It does get easier.