Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Celiac Test Negative...What To Do Next.


  • Please log in to reply
4 replies to this topic

#1 Gobbie

Gobbie

    Community Member

  • Advanced Members
  • PipPipPip
  • 52 posts

Posted 26 January 2010 - 10:53 AM

The general medical system disappoints me once again.

After taking about 6tubes of blood out and making me wait a week in agony.
My local doctor simply told me that my test came out negative for celiac.

Though my gluten symptoms are so severe.
My doctor even thought that gluten intolerance is the same thing as celiac...
No knowledge whatsoever on food allergies and intolerances.

Now, I do not know what to do.

I live in London and I am convinced I have Celiac or Crohn's or some sort of bad infection preventing me from eating proper food.

My body is too damaged to go back on gluten diet...

Are there any more tests avaiable (in affordable price) for celiac?

I am so exhausted and fed up......
Can not believe I am more knowledgable on this stuff than the doctors or medical team around me.
How uesless. How uninformative. How cruel is this.

Please, if anyone knows any alternative, accurate, proper, knowledgeable celiac tests in London, please please let me know. I will be waiting.

Thank you so much.
  • 0

Celiac.com Sponsor:

#2 Wolicki

Wolicki

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 948 posts

Posted 26 January 2010 - 08:37 PM

It would be helpful if you could post your test results, with the name of each test. Sometimes doctors do not order the full panel.
You could always try a gluten free trial....
  • 0
Gluten free is not so bad! If you are new, hang it there, it gets easier!

#3 ravenwoodglass

ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,696 posts

Posted 27 January 2010 - 06:40 AM

Does your statement that you spent a week in agony waiting for test results and that you don't want to go back to a gluten diet mean that you have been gluten free. Did you get a good response from the diet? If so keep it up. False negatives are not uncommon, especially if you have been gluten free for a while. Sometimes we have to listen to our bodies and go with what the body is telling us because testing for celiac really leaves a lot to be desired. You don't need a doctors permission to be gluten free. I think that in your country they would give you a 'script' for gluten-free food but would the savings be worth it if it takes years for you to finally get an official diagnosis?
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 GFinDC

GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,110 posts

Posted 27 January 2010 - 09:02 PM

You could look at Enterolab testing, but I don't know if the health care system there would accept it. Enterolab is in USA Texas, so it international shipping may not work for it. They could tell you.

There is a test called Biocard from Canada for $50 bucks or so that take a drop of blood and you can to the test at home.

Mot any test requires you to be eating gluten before hand so the antibodies will be active in your blood stream and be detectable though. Enterolab is an exception and they say can detect the antibodies for a while after stopping gluten.

An endoscopy is another test where they take biopsy samples from the intestinal lining. They then inspect the sample for sign of villi damage. Still have to be on gluten for that one too and the results are not 100% reliable either.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 rachel_gf

rachel_gf

    New Community Member

  • Advanced Members
  • Pip
  • 23 posts

Posted 28 January 2010 - 03:04 PM

Hello, there.

Well, the good news about the Enterolabs test in the US is that the exchange rate of the pound vs. the dollar will help you. But no, it's not cheap if you pay yourself. You may also want to do genetic testing - I'm not sure what options there are in the UK - to see what your risk level is if it wasn't included in your

There are a significant number of people with biopsy-proven celiac disease who test negative on the blood test. Maybe your doctor could prescribe a biopsy anyway?

http://www.celiac.co...ophy/Page1.html

http://www.celiac.co...ease/Page1.html

Or perhaps you have gluten sensitivity and not visible intestinal damage (yet?). A gluten-free diet may still be right for you. I had pretty significant changes gluten-free and glutened, though my Prometheus Celiac Plus Panel showed negative blood test results. I did test positive on the Enterolabs gluten sensitivity test.

Good luck to you. I'm sorry you're sick.
  • 0


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: