• 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.

Confused About Testing & Diagnosis
0

4 posts in this topic

Okay, I had blood tests for antibodies and small bowel biopsies done 8 years ago before I was gluten-free and they were negative. Recently I had the tests done again--still negative. But I was gluten-free at the time, so I'm not sure they were accurate. Now I've had HLA tests done, which I believe detect the gene for Celiac. Those were negative. So does this absolutely mean that I am not Celiac? And since I still know that I am gluten sensitive, does that mean I just have an intolerance? Will it develop into celiac disease? Or is that impossible since the HLA tests were negative?

I find that doctors are not good at explaining any of this stuff, and I'm so confused. And I'm still sick much of the time. The doctors now just want to say it's IBS, but I feel like IBS is a symptom, not a diagnosis.

I'm considering the Enterolab tests, but I wondered if it's worth it based on my previous test results.

Any advice would be appreciated!!

Thanks,

Judith

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Yeah, I'd say Enterolab is worth it. My biopsy was negative. My blood was a maybe, but his tests came back saying yes. For the genes too.

You might want to check out this thread.

A quote from it:

Currently the only two genes that are being called Celiac Markers are the DQ2 & DQ8(or is it DQ3 subtype 8?). Anyhow, there may come a day when these other gluten intolerance genes are also recognised as Celiac markers.

Which basically, believe means.. that the genes your doctor tested for didn't show up, but there could be other genes that your doctor didn't check for, that Enterolab does, that could cause you to have problems with gluten.

Enterolab test for genes with a cheek sample. Also tests for anti-bodies in stool. Blood tests can't always pick up on the anti-bodies, if enough aren't in the blood.

The only problem you may run into, is how long have you been gluten-free? I believe someone said you could be up to a year gluten-free for the testing for Enterolab to work, but I might be wrong there. You could try emailing them, the address is on their website. So far every time I've sent them an email, got a response back the next day.

So does this absolutely mean that I am not Celiac? And since I still know that I am gluten sensitive, does that mean I just have an intolerance? Will it develop into celiac disease?

Well I guess you could say you're not Celiac. Celiac if I'm right, means you have damage to your small intestines from gluten. But a gluten intolerance can easily develop into Celiac, and both are treated the same way. So some people consider them the same thing. Which in a sense they are.

But if you do feel better when not eating gluten, I'd say just say off gluten. Or if you want some testing done too, then contact Enterolab. They do also check for other food intelorances if you had other questions too.

Good luck! =)

0

Share this post


Link to post
Share on other sites

If you have been gluten-free for many years it would affect the results of stool testing through Enterolab (unless you were looking to check to make sure you are 100% gluten-free), but it would NOT affect the results of the gene test. For $150 you can find out if you have any of the lesser known gluten intolerance genes. You already know that you don't carry the two most common Celiac genes, but a doctor I trust very much once told me that there has not been enough genetic studies done for Celiac to know that they have found all of the genes responsible for the disease. so if you obviously react to gluten then I suggest you stick with the gluten-free diet. Maybe eventually they will come up with some tests that will give us straight answers without having to consume gluten (might as well be having us all drink poison, its about the same for us!).

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Oops, yeah.. being gluten-free has no effect on Gene testing. Guess I should been more specific there.. thanks Mariann. =)

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
      106,396
    • Total Posts
      930,326
  • Member Statistics

    • Total Members
      63,814
    • Most Online
      3,093

    Newest Member
    MH0730
    Joined
  • Popular Now

  • Topics

  • Posts

    • My Celiac disease presented as yours did: anemia, unexplained weight loss, aches and pains (due to vitamin and mineral deficiencies from malabsorption), the abdominal burning (whether I ate or not), decreased appetite, itching, the works. Plus I had a mood like a gorgon, which wasn't helped by my friends telling me "how slender!" I looked. My bones were basically all that was holding me up. I've had the blood panel too, which has proven very informative. I had a follow-up celiac panel after I'd been on the diet for over a year and it showed the diet was working. I also went through an anger phase because my (now former) doc (who is also my dad's doc and knows he has celiac AND knows we're related...) just wrote me a prescription for antidepressants, whereas I might have been spared years of feeling crappy (my late 30s!) if he'd just ordered a CBC and found the anemia. I'm a woman and I feel like sometimes whatever you say to a doc (even female docs!), all they hear is "psych symptoms". It really made me mad. But I've always pooped like a champ so I didn't exactly have typical symptoms either. Then I thought about how long it took my poor dad to get diagnosed (decades), which was before there was all this awareness, and I feel grateful for the fact that it took comparatively far less time for me to get my diagnosis and start feeling better. Don't worry about not finding stuff you like to eat: since gluten-free has become "the new thing" there are so many choices and the price has come down considerably since my dad got diagnosed (over 12 years ago). If your doc confirms celiac, then you'll be back on the (albeit gluten-free!) mac and cheese in no time, this time actually absorbing some of the mac and cheesy goodness! Feel better and take care.
    • If you are worried about your glycemic levels, then you should test with a glucose meter.  I have diabetes (insulin resistance/TD2) and rice and potatoes spike me like crazy!  I might as well consume ice cream!  But if you do not have diabetes, no worries!  
    • Thanks to both of you for your replies. I wasn't so much concerned about the arsenic (although that is an additional consideration) as I was about the glycemic level. I don't bake enough to make blending my own flour blends worthwhile, so I will definitely check out the links you provided, Ennis_TX. So far I'm tolerating oats and my gastro doc says I can keep eating them as long as they're certified GT. I just looked at some crackers I have for hummus and noticed their main ingredient is rice. I should probably just eat the hummus with veggies!
    • I agree with Ennis.  It sounds like she is getting access to gluten way too often to expect healing.   I had some pretty severe patches of intestinal damage when I was diagnosed.  Anemia was my symptom and I had no gut issues then.  So, just because she injests gluten and does not have some major symptoms right away, does not mean she is not building up antibodies.  Have those antibodies been re-tested to see if they are in the normal ranges now?  Missing patches of damage in the small intestine is possible.  Heck, the small intestine is the size of a tennis court (goggle it).  So easy to miss.  Also, your GI should have taken more than four samples?  How many were taken? (Forgive me, if I have forgotten.) Cross contamination in your house is real, especially if you have kids in the house.  Member Jebby, a preemie doctor who has celiac disease, was not getting well.  Turns out her four small and adorable children were glutening her.  She made her house gluten free.  Just something to consider.   You mentioned she had access to gluten at a party.  So, does that mean she caves in and eats it?  She needs to become a stakeholder in this diet.  
    • I think that if you soaked in the paddle in vinegar and scrubbed it a few times, you will be fine.  But if in doubt, just set the mixer aside for a while until your family's health has improved.  In the meantime, use your arm to mix dough!  My grandma never had a mixer!   I bought a bunch of new stuff because I had been married for 25 years when diagnosed.  It was time for new things!   Everyone is different in their response to gluten.  Science has given us a good estimate, but we know that nothing is "one size fits all".  You just have to figure out what is best for you and your family.   My anemia resolved within months of being gluten free (ferritin levels).  I still have Thalassemia, but it is mild and my body has adapted.  It is most likely the one reason that I never made the Olympic team!  😆 BTW, family and friends are not allowed to bring in gluten into our house with the exception of beer.  They can contribute to a potluck by bringing beverages, uncut fruit and veggies, new condiments, tableware, and ice cream ......etc.
  • Upcoming Events