Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
haleym

Now What?

Rate this topic

Recommended Posts

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! :lol:

Share this post


Link to post
Share on other sites
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! :lol:

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.

Share this post


Link to post
Share on other sites
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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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.:)

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×