Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New


justme

Recommended Posts

justme Enthusiast

I am not even sure if I have Celiacs... I was "diagnosed" with IBS... nothing was helping.. it was recommended I avoid gluten.. and I feel muuuuch better... I am getting tested to know for sure on tuesday.. but I was wondering if you have any suggestions for "newbies"..


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
GliadinX
GliadinX



Celiac.com Sponsor (A8-M):
Food for Life


Ursa Major Collaborator

Hi, and welcome to our board.

Well, IBS is a junk 'diagnosis', basically meaning that the doctor is clueless as to what makes you sick.

How long have you been gluten-free? Testing after going gluten-free is pretty much meaningless, as you are more likely than not getting false negatives then. Unless you're being tested by Enterolab (Open Original Shared Link), you don't need to be eating gluten for their testing.

Your doctor should have done the tests for celiac disease before telling you to go gluten-free, not after. Arghhh, why are doctors so ignorant! In order for the tests to be valid, you'd have to go back on gluten for quite a long time before the villi will be damaged enough again to get positive tests.

Since the gluten-free diet is helping you so much, you're obviously at least gluten sensitive and should avoid it, no matter what. Is an 'official' diagnosis important enough to you to go back on gluten?

taz sharratt Enthusiast
  Ursula said:
Hi, and welcome to our board.

Well, IBS is a junk 'diagnosis', basically meaning that the doctor is clueless as to what makes you sick.

How long have you been gluten-free? Testing after going gluten-free is pretty much meaningless, as you are more likely than not getting false negatives then. Unless you're being tested by Enterolab (Open Original Shared Link), you don't need to be eating gluten for their testing.

Your doctor should have done the tests for celiac disease before telling you to go gluten-free, not after. Arghhh, why are doctors so ignorant! In order for the tests to be valid, you'd have to go back on gluten for quite a long time before the villi will be damaged enough again to get positive tests.

Since the gluten-free diet is helping you so much, you're obviously at least gluten sensitive and should avoid it, no matter what. Is an 'official' diagnosis important enough to you to go back on gluten?

agree with everything ursula said, the best test in my mind is the diet, if you feel better on the diet there you arethen, take it from someone who has recently learned her lesson that way :unsure::unsure: i too was diagnosed with IBS what a crock of s**t to pardon the punn, ha ha! :D oh and sorry , welcome to the board

justme Enthusiast
  Ursula said:
Hi, and welcome to our board.

Well, IBS is a junk 'diagnosis', basically meaning that the doctor is clueless as to what makes you sick.

How long have you been gluten-free? Testing after going gluten-free is pretty much meaningless, as you are more likely than not getting false negatives then. Unless you're being tested by Enterolab (Open Original Shared Link), you don't need to be eating gluten for their testing.

Your doctor should have done the tests for celiac disease before telling you to go gluten-free, not after. Arghhh, why are doctors so ignorant! In order for the tests to be valid, you'd have to go back on gluten for quite a long time before the villi will be damaged enough again to get positive tests.

Since the gluten-free diet is helping you so much, you're obviously at least gluten sensitive and should avoid it, no matter what. Is an 'official' diagnosis important enough to you to go back on gluten?

well it only has been a couple of days... i am having the blood test on tuesday.. i figure.. since i feel better not eating gluten.. i'd go back to eating normally maybe tonight into tuesday morning.. i am just finishing up a gluten free breakfast.. and i have gluten free lunch in the fridge (i'm at work).. i really only has been a couple of days of eating only gluten free stuff and i feel soo much better... maybe it's just in my head?

ravenwoodglass Mentor
  justme said:
well it only has been a couple of days... i am having the blood test on tuesday.. i figure.. since i feel better not eating gluten.. i'd go back to eating normally maybe tonight into tuesday morning.. i am just finishing up a gluten free breakfast.. and i have gluten free lunch in the fridge (i'm at work).. i really only has been a couple of days of eating only gluten free stuff and i feel soo much better... maybe it's just in my head?

No It's not in your head. Some do get relief from IBS symptoms quickly, others do not. There are a lot of false negatives on blood tests, there are also doctors who will see a low positive and tell you it's negative. The true test is how you feel on the diet.

loraleena Contributor

I was diagnosed with IBS 9 years ago, which was followed by a bunch of autoimmuned diseases. Guess what? Last year I found out I had gluten intolerance. IBS is the number one misdiagnoses for celiac disease! If you feel better gluten free, then you have your answer. You are at least gluten intolerant, which can cause lots of health problems for you in the future if you continue to eat gluten. Since you are already gluten free, you should get a stool test from enterolabs to confirm, but it sounds like you found out on your own.

Guest nini

IBS is a compilation of symptoms, NOT a diagnosis. If you feel better on the diet, it is NOT in your head and you have your answer. Regardless of what your test results show, go ahead and go gluten free. Why should you trust me on this? Because I was "dx'ed" with IBS over 10 years ago or more and just continued to get sicker, when I was first told about gluten intolerance I scoffed at it and thought yeah right, I'm not giving up my Krispy Kremes and Egg McMuffins... after very nearly dying, having several miscarriages and very nearly losing my daughter, I was finally accurately dx'ed when my daughter was 3. If I had listened when I first heard about gluten intolerance, I could have avoided years of illness and I am hoping that by sharing my story that others will not go the same route that I did.

Positive dietary response is THE MOST VALID diagnostic tool, the other tests can only confirm it, they cannot rule it out. And the diet is very healthy if done correctly and there is no reason to not do the diet. If you didn't improve on the diet, you could still pursue other testing to rule out other things, but since you have already noticed an improvement on the diet, I'm telling you that you have your answer and do not need to satisfy your Dr.s morbid curiosity. If he's telling you to do the tests AFTER already going gluten-free that shows he doesn't really know a thing about Celiac or gluten intolerance and can't be trusted anyway. Just be smart. Do what you need to do for your own piece of mind, but I urge you to just trust your gut at this point and just go gluten-free. You do not need a dr.s permission for the diet and do you really want a dx of Celiac on your permanent record anyway? I was denied health insurance coverage because of it.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Tierra Farm
Daura Damm



Celiac.com Sponsor (A8-M):
Daura Damm


Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      130,244
    • Most Online (within 30 mins)
      7,748

    Nicky2925NZ
    Newest Member
    Nicky2925NZ
    Joined

  • Celiac.com Sponsor (A20):
    Daura Damm


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Food for Life



  • Upcoming Events

  • Posts

    • Scott Adams
      No, I would not say this at all. If you were diagnosed with celiac disease and were gluten-free for a while, you could have gone into remission. Everyone's body is different, and some celiacs may be able to get regular contamination and not end up with damaged villi and positive antibody tests, while others who ingest tiny amounts will relapse and have full blown symptoms and flattened villi.  Only a full gluten challenge would reveal where you are at this point. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Pablohoyasaxa
      Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 
    • knitty kitty
      I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.   I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to...
    • meghanf
      We have a gluten-free household. It's the least stressful option. No one else in my family has Celiac, but they are all extremely supportive. We don't even have Play-doh for this kids.
×
×
  • Create New...