• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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:
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
Ads by Google:


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
      106,403
    • Total Posts
      930,360
  • Member Statistics

    • Total Members
      63,825
    • Most Online
      3,093

    Newest Member
    Hchapman95
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Could a mod please move this post:   and my reply below to a new thread when they get a chance? Thanks! Matt
    • Hello and welcome Firstly, don't worry about it but for ease your post (and hopefully my reply) will probably be moved to its own thread. That will make it easier for others to see it and reply and also help Galaxy's own thread here on track and making sense.  The antibodies that the celiac tests look for can drop very quickly, so... maybe? Celiac is difficult to test for, there are different tests and sometimes someone doesnt test on one but does on the other. If you can get a copy of the tests and post it here the community may be able to help explain the results.  It may have shown damage to the villi, the little tendrils in your intestine that help you extract nutrients from your food. Celiac is one, but not the only, way in which they can get damaged leading to a vast number of potential symptoms and further making diagnosis a tricky proposition. Definitely, there's a connection. Here's a page that explains it in detail: https://stomachachefree.wordpress.com/2012/03/21/liver-disease-in-celiacs/ Fantastic  It sounds as if your doctors were happy to diagnose you on the basis of the endoscopy? It may be then that you've found your answer. I hope so, you've clearly had a rotten and very scary time.  I'm sure with the positive reaction to the diet you want to go on and get healthy, but I would only add that you should discuss this with your doctors, because they may want to exclude other potential causes if they've not confirmed celiac at this point. Check out the advice for newly diagnosed here: To your family I'd simply say that celiac is a disease of the autoimmune system, the part of our body that fights diseases and keeps us safe. In celiac people the autoimmune system see's the gluten protein found in wheat, barley, or rye grains as a threat to the system and it produces antibodies to attack it and in doing so attacks it's own body as well. It's genetic in component so close family members should consider a test if they have any of the many symptoms. There's roughly 1 person in 100 with celiac but most of them don't know it and are risking getting or staying sick by not finding out.  There's further info for them and you here: https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/ I'm going to ask a mod to move your post and my reply to a new thread, but wanted to give you an answer first The good news is you've found a great site and there will be lots of support for you here. You've also got 'lucky' in that if you're going to have an autoimmune condition, celiac is a good one  Most react really well to the gluten free diet and you will hopefully have much more healing to come! Best wishes Matt
    • Please share what was so difficult about starting your account.
    • I'm new here so please forgive me if I'm in the wrong forum. But I could use some clarity and input.. So I'll try to make my story brief as possible😀 So about 8 months ago I began itching uncontrollably and after going to the Dr for labs she found my liver enzymes were 5x what they should be and was referred to a gastro Dr.  Gastrointestinal Dr ran multiple scans, blood work over the next 2 months and referred me to teaching hospital with a " tumor board" apparently I had a mass within my bile ducts that was blocking bile from liver. Was given a grim diagnosis of rare cancer and told would be dead within the year. Then had an endoscopy done to get tissue of the mass and for some reason it had partially resolved and was no longer blocking bile duct. At this point they could not find and cancerous cells. So fast forward 3 months I'm still in pain and had another endoscopy and the biopsy taken showed high possibility of celiacs.  The blood work was negative for celiac but after the grim cancerous diagnosis I had been unable to eat for 2 weeks or so and so I'm not sure if that would have skewed the labs?. How could the biopsy show high possibility of celiac?  And had anyone heard of celiac causing inflammation in the bile ducts?  I have been gluten-free for 6 weeks and have been feeling remarkably better pain in the upper right quadrant is less, and migraines ( I have had for my whole life) have lessened.  So all this to say I don't understand celiacs and how to explain it to family. Or how all of a sudden this happens. Ask if anyone can shed any insight I would appreciate it. Blessings   
    • Thank you for taking the time for sharing that info. Don't we have the best disease ever! There's got to be a better way to cut down the scarring. Yes, I've scratched till it bleed. Can't help it. It's like having a bunch of mosquito bites. Yes, only gluten free now. Still have bursts, so probably am being exposed to gluten. Will need to stop dapsone soon. Good luck with your situation.
  • Upcoming Events