Now What?

[haleym]

Hello Everyone!

I need some advice as to where to proceed. In March, my ARNP suspected me for celiac and did a blood test. I am not sure what exactly they tested for in terms of the type of celiac panel, but it came out negative. I do have autoimmune thyroid issues and recurring IBS type symptoms. I have been eating well for a while now but I have been without periods for what seems like too long after I got past a moderate bout of an eating disorder. I am not grossly underweight, but have bony arms and legs. I am 5 foot 6 inches and 130 lbs.

Now the kicker. My ARNP wants me to go and get a diagnostic colonoscopy for my symptoms, but I am nervous about that, so I have gone the last 2 months without doing anything. Two weeks ago, I decided that enough was enough and started the gluten free diet (just to test it out) without consulting my MD. After about 4 days, I started really feeling better! My stomach pain/bloating/loose stools/flatulence have gotten way better. So my question is this. Do I :

1. Call my ARNP and tell her what I did and see what I should do now?

2. Go to a naturopathic physican/nutritionist and talk to them about possible gluten intolerance?

3. Continue the gluten free diet without getting any diagnosis confirmed?

Thanks for the help guys!

[The Fluffy Assassin]

Hello Everyone!

I need some advice as to where to proceed. In March, my ARNP suspected me for celiac and did a blood test. I am not sure what exactly they tested for in terms of the type of celiac panel, but it came out negative. I do have autoimmune thyroid issues and recurring IBS type symptoms. I have been eating well for a while now but I have been without periods for what seems like too long after I got past a moderate bout of an eating disorder. I am not grossly underweight, but have bony arms and legs. I am 5 foot 6 inches and 130 lbs.

Now the kicker. My ARNP wants me to go and get a diagnostic colonoscopy for my symptoms, but I am nervous about that, so I have gone the last 2 months without doing anything. Two weeks ago, I decided that enough was enough and started the gluten free diet (just to test it out) without consulting my MD. After about 4 days, I started really feeling better! My stomach pain/bloating/loose stools/flatulence have gotten way better. So my question is this. Do I :

1. Call my ARNP and tell her what I did and see what I should do now?

2. Go to a naturopathic physican/nutritionist and talk to them about possible gluten intolerance?

3. Continue the gluten free diet without getting any diagnosis confirmed?

Thanks for the help guys!

There's no particular need for a formal diagnosis, but as the ARNP was the one who first suspected celiac disease, you might as well stay in touch. I'd suggest going gluten free for a month or a few months and then going in for bloodwork to make sure you aren't missing any nutrients.

I never got any formal diagnosis, but understand that the endoscopy (colonoscopy wouldn't be too useful for celiac disease, as our problem is in the small intestine) isn't painful. But you do have to keep eating gluten for it to be useful. This is why I've never pursued a diagnosis.

Welcome to the board and to the diet, and I hope gluten-free proves to be the answer for you.

[haleym]

There's no particular need for a formal diagnosis, but as the ARNP was the one who first suspected celiac disease, you might as well stay in touch. I'd suggest going gluten free for a month or a few months and then going in for bloodwork to make sure you aren't missing any nutrients.

I never got any formal diagnosis, but understand that the endoscopy (colonoscopy wouldn't be too useful for celiac disease, as our problem is in the small intestine) isn't painful. But you do have to keep eating gluten for it to be useful. This is why I've never pursued a diagnosis.

Welcome to the board and to the diet, and I hope gluten-free proves to be the answer for you.

Thank you soo much! Another thing too, that you may have insight into... I am REALLY self conscious about telling my family and friends about this... not ashamed but I just dont want them to feel that I am going to be a burden for them when I come visit, etc. I am single and live alone so its pretty easy for me when on my own, but...!!! Have you found any way of approaching this that has been effective to you when dealing with family and friends?

[ang1e0251]

If your friend or family member came to you and said, "I have a peanut allergy. I cannot eat peanut, it's products or anything cooked or packaged around them." Would you think them a burden or inconveniance? No, because you care about them and you would gladly acommodate them. You are not a burden and they care about you. Don't sell them short.

[The Fluffy Assassin]

Thank you soo much! Another thing too, that you may have insight into... I am REALLY self conscious about telling my family and friends about this... not ashamed but I just dont want them to feel that I am going to be a burden for them when I come visit, etc. I am single and live alone so its pretty easy for me when on my own, but...!!! Have you found any way of approaching this that has been effective to you when dealing with family and friends?

Just tell them and don't worry about it. The problem isn't the telling them, it's the ways and means. Because people are really nice and they want to help. If you're at their house, they want to feed you and want to do the best they can to give you gluten-free food, but unless they are willing to clean the kitchen to white glove level and replace a lot of pots, pans, utensils, etc., they just can't. Therefore, the best approach is to set up food-oriented meetings with family and friends at someplace like Outback with a reliable gluten-free menu. Or just opt out on food and eat at home before or after. People will not be offended; they are generally very understanding. Or you can cook for them; I get a kick out of showing people that there's nothing freaky about gluten-free cooking. I also find that a lot of people are very interested to learn about celiac disease. So far nobody has put up the sign to alert the evil eye or put on a surgical mask or anything like that.

Also, as your B12 levels return to normal, you'll probably find your self-consciousness generally going down. So there's that to look forward to.

[haleym]

If your friend or family member came to you and said, "I have a peanut allergy. I cannot eat peanut, it's products or anything cooked or packaged around them." Would you think them a burden or inconveniance? No, because you care about them and you would gladly acommodate them. You are not a burden and they care about you. Don't sell them short.

Thanks! I talked to my mom and she thought I was crazy!! Crazy that I thought she might not understand!!! She said that she TOTALLY has my back and that a its nothing to be ashamed about. Lots of people we know are gluten intolerant anyway and it makes no difference- they make spaghetti and hamburger buns and cookies and stuff!

I appreciate all your support!

Haley