Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

No Money In It For Thr Drs
0

7 posts in this topic

It is amazing to me that the dr's that I have spoken with have insisted on doing a biopsy. Why want they just test the stool sample? There is no money in it for them. I have spoken both with specialist at Duke and UNC. the protocal is biopsy to confirm the blood test. I shared with them the name of DR. Fine and his research through what I learned reading all the post here, one told me if that was the route I wanted to take "good luck" and he hung up! When did doctors give up on finding out what was best for the patient? It is a shame that we have to be in total control of our medical diagnosis.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Unfortunately a lot of doctor do not accept Dr. Fine's method of testing and would rather do a biopsy before making a dx of celiac disease. I have been down both paths I let my GI do all the tests he wanted to do only for them to come back negative then I chose the Enterolab route, it was the best decision I ever made for me and my daughter.

People also need to remember it isn't always neccessary to go through these invasive procedures, you can always TRY the gluten-free diet for a couple of weeks / months and if you see an improvement in your health then you have celiac disease or gluten sensitivity and should NOT ingest gluten.

Just my opinion :D

0

Share this post


Link to post
Share on other sites

JHMom-

SO the GI test from your regular GI doc came back negative (as mine did) but the enterlab results were positive? Has the CF diet helped or do you still have some of the same symptoms?

I am considering buying a test from enterlab- my GI doc has been no help (now 2 years of coming and going to her office) still have all the same symptoms but getting worse!!

0

Share this post


Link to post
Share on other sites

My doctor was baffled about my canker sores that had been reocurring since Dec. We tried all sorts of stuff and he was at the end of his resources to help me. Someone on another forum I belong to suggested I try looking into celiac. I have 13 of the symptoms and one complication (severe osteoporosis). So I began a gluten free diet. Within three days the sores were gone. I only had reocurrances when I challenged with two Girl Scout cookies and once when I mistakenly drank my son's water after he had been eating soda crackers and there was backwash in it. (I know, EEEEEEW!) Anyway, I wrote letter to my doctor about my results with the diet and told him if he knew how to do the blood tests or knew the labs here could process them, I'd be happy to come in for blood work and although reluctantly, I would also do the biopsy if he really wanted me too. His nurse called yesterday. Apparently no one here does the blood work because he said the only option is the biopsy for a definite diagnosis. However, he said if I am having good results with the diet to just continue it. He didn't think the biopsy was necessary unless I just wanted it. He also congratulated me on figuring out the cure to my canker sores....said, "Good Work!"

I am happy with the decision to just continue the diet without a medical diagnosis. I've had good results. Would I abandon the diet if I had the biopsy and it came back negative? No, I don't think so.

Marsha :rolleyes:

0

Share this post


Link to post
Share on other sites
JHMom-SO the GI test from your regular GI doc came back negative (as mine did) but the enterlab results were positive? Has the CF diet helped or do you still have some of the same symptoms?

I am considering buying a test from enterlab- my GI doc has been no help (now 2 years of coming and going to her office) still have all the same symptoms but getting worse!!

Yes, my blood work and endoscopy biopsy were negative. The biopsy showed "patchy inflammation" but was not enough to warrant a celiac disease dx. I purchased the Enterolab "gluten sensitivity" test it came back positive and upon Dr. Fine's recommendation also purchased the "malabsorption test" and it too came back positive. I immediately started the gluten-free diet and could tell a difference within a couple of days, the abdominal pain was gone. I still have some GI probs but I think it's because of something else, not gluten sensitivity.

My doctor NOW says (after I sent the enterolab results to him and advised him that I was on a gluten-free diet) that "it takes time for a disease to show up in the blood or in a biopsy", well time is something I DID NOT have, I could not bare to live in that kind of pain "waiting on it to show up".

0

Share this post


Link to post
Share on other sites




I appreciate everyone here. It is such a comfort to know that I can share Celiac concerns. Having this message board has been a true blessing. The people around me just say" Whats the big deal, just dont eat bread. " If they only knew.lol

0

Share this post


Link to post
Share on other sites

"I appreciate everyone here. It is such a comfort to know that I can share Celiac concerns. Having this message board has been a true blessing. The people around me just say" Whats the big deal, just dont eat bread. " If they only knew.lol"

I will be going to my parent's for Mother's Day weekend. My sister and her husband and another lady friend of my mom's will be there too. I know I will get baraged with questions about why I am eating the way I do. My brother in law will be especially challenging. He is always so sarcastic and negative about everything. I know he will try to make me feel foolish for eating so strangely. I am praying it all goes smoothly.

:unsure: Marsha

0

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

  • Forum Statistics

    • Total Topics
      103,596
    • Total Posts
      918,304
  • Topics

  • Posts

    • No gluten allergy because I don't have classic symptoms of celiac
      after you get yourself squared away, these docs need reporting.  out right lying to you...
    • Oat Flour making me sick?
      Hi CeliacMommaX2, 'Yes, you must treat oats like wheat in a situation where gluten free oats cause the same response. I would also not use pots or pans for your daughter, that you have cooked oats in, as there is always a chance that there are traces left in the pans after washing up.  It's better safe than sorry. 
    • In Dire Need Of Help
      Alex the good news is you have found a great site with useful information and warm support! You need to work with your doctor to get a diagnosis but there are plenty here who have had similar experiences: http://www.celiac.com/gluten-free/search/?&q=panic%20attack so it sounds like your on the right lines   Take heart that you have probably found the cause now rather than later.  Follow CyclingLady's excellent advice above and go for celiac screening asap. For tests to work you need to be eating gluten for some time. That is a scary prospect when you've finally experienced some relief but it's for a limited time period, you can get support here along the way and if you choose to you can go gluten-free at the end and get relief whatever the results.  Once you're done testing and off the gluten you will be in a much better position to nail the lifestyle. That may mean some pre-planning, maybe taking a backpack with some gluten-free snacks with you, at least until you find the places you can reliably eat at. There are apps and sites that can help and probably local support groups in NYC as well: https://www.google.co.uk/?ion=1&espv=2#q=new%20york%20gluten%20free%20restaurants With research you'll also get to know what fast food options are viable, what readily available candy bars are ok etc. I can eat Mcdonalds fries for instance, which can come in handy if I'm away from my kitchen or supplies. Most starbucks or equivalents will have at least a gluten-free snack bar. So although a pain in the arse, it's doable and the health payoffs MORE than make up for the hassle.  Good luck! 
    • to biopsy or not?
      I ordered the cookbook the same day you recommended it.  I am SO excited!  I actually cried looking through the book!  I honestly don't believe I am good at all in the kitchen.  I am lucky enough to have a husband who cooks everything when he's home.  The only thing I felt skilled at in the kitchen was baking.  I made all of my kids' birthday cakes for the last 8 years.  I was sad thinking that we wouldn't have anything good for a birthday cake.  I mean, I've tried gluten free cake from a box, but it was just ok.  It wasn't amazing the way a homemade cake can be.  So now I have hope.  Hope that maybe my non-celiac kids will enjoy a birthday cake still.  My daughter (the most-likely-to-be-celiac one) never really ate birthday cake to begin with.   So this summer is her birthday and we will find out if it's good!  Thank you for the recommendation!!!   Janis
    • antibiotic for my 6 year old- could it have gluten?
      It is probably fine.  Very few meds actually have gluten.   shows as gluten-free on this list  http://www.glutenfreedrugs.com/list.htm
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,697
    • Most Online
      1,763

    Newest Member
    deandrade
    Joined