Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?


Any Advice Where To Begin?

Rate this topic

Recommended Posts

Hi everyone! been lurking, this is the first time I'm writing. You are all so nice & helpful!

I'll get to the point since you've all been there, done that already!

Told by nutritionist 8 years ago to avoid wheat (based on symptoms).

I did and of course felt so much better.

After 6 years off gluten, I had a colonoscopy (mom had cance at 60-doesn't drink or smoke, Italian-all homemade food-she might be a celiac too?). Dr told me no reason to avoid wheat. (uneducated?)

I started eating everything. It took a couple of months, but caught up with me.

So, I've been back to gluten free for 2 months, and of couse, feel so much better!

I didn't know about celiac disease until now.

Is it too late for blood work since I'm off gluten? what about food allergy testing, biopsy, celiac panel

or dna testing????

I keep reading, 'what difference does it make to be dx'd if the diet works, just do it'. That's very true and I will stay gluten free. However, I do suffer from another autoimmune disease, and feel that I should know for sure about my health.

so, what's the scoop ~ get tested or not? if so, where do I begin?

~Patti in NJ~

Share this post

Link to post
Share on other sites

I think that you are on the right track. If you feel better being gluten free, just continue. Some people want a name to call things. I had never heard of celiac disease until I was dx'd. It was quite a surprize, but a welcome one since I thought I may have cancer.

Testing can be expensive. If you feel comfortable without being tested and you continue to improve on a gluten free diet. Do just that :)

If you have any other questions, please feel to ask and welcome here.

Lisa B.

Share this post

Link to post
Share on other sites

I have CFIDS and Fibromyalgia, so I have an autoimmune system disease too. I am hoping this diet will help me with the symptoms I have been suffering with for 16 years. So far, I have noticed a small improvement in my fatigue and a huge difference in my stomach problems.

I lurked too in the beginning and now I am all too happy to post. These people have been wonderful. I haven't felt this good about myself in a very long time. Finally, people who understand, are non judmental and helpful.

I saw a GI doctor for over 2 years complaining of bloating, gas, severe abdominal pains, and bouts of "C" and "D". I had an endoscopy, colonoscopy, upper GI, and was even tested for Gastroparesis. So I know I have diverticulitus, erosive gastritis, hiatal hernia, partial gastroparesis, IBS, whatever. Even had my gallbladder out. And, I wish my GI doctor had done a celiac biopsy on me so that way I would know for sure, but I am not so eager to go have any more tests run.

I've been on the food allergy / sensitivity diet for 6 months and the gluten free for 5. The diet IS working. I'm still figuring out what foods I need to avoid, cause I'm a slow learner. And it takes me at least 4 or 5 attempts to learn my lesson. But I say if it helps, why not stay on it ?

Good luck marcia

Share this post

Link to post
Share on other sites

thanks ladies!

I did more research and I'm in the process of trying to get the dna test done. Since I've been gluten free for so long, it seems like the only accurate thing I can do. If I have the gene, then I'll know I'm not crazy. If I don't, I guess other food allergy/intolerance tests will need to be done.

Geez Marcia, you poor girl going thru all of that!

Have a great weekend!

~Patti in NJ~

Share this post

Link to post
Share on other sites

Hi Pattic!

Welcome to the board! I am glad you are getting some answers and the info on here is helping you out. Any questions you have, just fire away! There are so many helpful and knowledgeable people on here who have been down this road before and know how difficult it is.

I wanted to mention a few things. Firstly, you mention your family is Italian. Did you know that in Italy, celiac disease is so prevalent that they test all children for it?

Also, your body has had a positive response to eliminating wheat, but have you searched for all sources of gluten in your diet? Medications, vitamins, shampoos, lotions, toothpaste, etc. Every little trace eliminated will make you feel that much better.......

The blood test for antibodies is pretty well out of the question for you now, but have you considered Enterolab? I have not personally used them, but many members have and have gotten answers there that they didn't get from poorly informed doctors.

Good Luck and welcome!


Share this post

Link to post
Share on other sites

thanks karen! yes, I am aware that celiac is very prevalent in a lot of european countries. I asked my mom if she had any symptoms and she got defensive - she's a very quiet, keep it all inside, private person. but, I can't help but wonder if she is a celiac too, and after 60 years of not eating gluten free it may have contributed to colon cancer -? (btw-that was 6 yrs ago and she's cancer free now :)

I'm very good about reading labels etc, but don't do everything I could be doing. Once I find out if I have the gene, I will take it more seriously than just eating gluten free - I will get a separate toaster, and use gluten free hygienne products, etc.....having true celiac disease (autoimmune disease) in my mind is different and much more serious from an allergy that causes temporary discomfort.

I have a dr appt friday (love my dr) to have him go thru the right channels. my wonderful ins will pay 80% based on the codes I got from kimball genetics. they told me a negative on the gene is 97% accurate and rules out celiac disease; and if one gene is found, along with my lifelong symptoms, it's safe to call myself a celiac. so, we shall see. I'd even pay the $292 myself if necessary, just to find out for sure after 34 years.

Bless you sweet woman - mom to 4, including a set of twins!!!!!!! And you still have time to write on this board! LOL

thanks for the info, and your valuable time! have a great weekend!

~Patti in NJ~

Share this post

Link to post
Share on other sites
Guest nini

I'm sorry but a negative on the gene test is still not the be all end all definitive that you do not have it. As I posted on another post, there are many biopsy proven Celiacs that DO NOT have either of the KNOWN Celiac genes. The medical community is still sadly lacking in their ability to accurately dx this disease. The ultimate test is positive response to a 100% gluten free diet, although even with that some people are asymptomatic and still have damage to the villi. testing is not perfect. It can only rule it in, NEVER completely rule it out.

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Top Posters +

  • Upcoming Events

    • April 17, 2019 Until April 27, 2019
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • May 01, 2019 04:00 PM Until 08:00 AM
      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
    • May 04, 2019 Until May 05, 2019
      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.
      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 
  • Create New...