Jump to content

  • 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):

    Celiac.com Sponsor (A1-M):

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

Testing Question After Gf

barbiannc

Recommended Posts

barbiannc Newbie
barbiannc
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

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

Celiac.com Sponsor (A8-M):


NanaV Rookie
NanaV
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

I'm curious, too. I had an endo biopsy years ago, and the docs never told me that being gluten-free for a year would make any difference at all. Grrrr.

 

I think they're wrong. Uninformed. And it leaves us gluten-free but undiagnosed.

cyclinglady Grand Master
cyclinglady
Posted

Your doctors are wrong!  You must be eating gluten to get an accurate result.  Check out this link to the University of Chicago's Celiac Center regarding this issue:

 

Open Original Shared Link

nvsmom Community Regular
nvsmom
Posted

The longer you are gluten-free, the higher the chances that any celiac test will yield a (false) negative result.  It IS possible to still have positive autoantibodies after 5 months gluten-free but I would say it's more likely that they will be negative. I personally still had a weak positive tTG IgA result after about 15 months gluten-free (it had fallen dramatically), but I know that my EMA IgA test became negative sometime before I was a year gluten-free.

 

After being gluten-free for 5 months you will need to complete a gluten challenge of about 2 slices of wheat bread per day for approximately 2 months before you will have accurate results.  :( It might be simpler to stay gluten-free.

 

And I agree, with a history of Hashi's, it's probably celiac disease.

 

Welcome to the board.  :)

WinterSong Community Regular
WinterSong
Posted

Flat out, your doctors are idiots. A friend of mine had a doctor who said the same thing, even after she had been gluten free for two years. Stupid doctors....

 

My blood tests were so positive they were off the charts, and it took me about a year and a half to get them down to normal, but even being gluten free for a few weeks can yield a false negative. 

 

Welcome to the board!

kareng Grand Master
kareng
Posted

While it sometimes takes a few months for antibodies to go down, That is usually people with sky-high antibody numbers.  Not everyone is that bad off.

 

Open Original Shared Link

barbiannc Newbie
barbiannc
Posted
  • Author

Thanks, everyone! Exactly what I thought. It makes me absolutely crazy that so many doctors are so misinformed. It is such a HUGE problem and so prevalent that I should think they would know the basics of it. So now the question remains......do I go through with the gluten challenge for several months to be retested or just remain gluten-free?? I guess I would like to know for sure so that I don't have to be quite as diligent in my gluten avoidance. I still don't eat it, but I'm probably not as careful as I should be in regards to ingredients that are not obviously gluten. So another question....I am due soon to have a routine colonoscopy (it's been several years since my last one). Is it feasible to ask them to do a biopsy then and if so, would this be diagnostic or do I again need to be eating gluten for it to be positive? Thanks so much for everyone's help. This is all so overwhelming and confusing.

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

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi! New to this site. Here is my story in a nutshell. I am 57 years old and have had "stomach problems" since my teens. In college I was told I had ulcers because of it, but not confirmed by any testing. Over the years I can't remember a day when at some point my stomach didn't hurt, my lower abdomen had excruciating pain etc. I have had all sorts of workups and nothing was ever found. I also have autoimmune thyroid disease (Hashimotos) so I know I am more likely to have celiac disease. I took myself off ALL gluten about 5 months ago. Within days I felt 100% better. My question for you all is this: I am seeing two doctors at a very large hospital in Cleveland.....an endo and a family practice doctor. The endo ordered a celiac test even though I told her I had been gluten free for months. She said it didn't matter. Test came back negative. I asked the family doctor the same question and was told that even though I have been gluten free this long, the antibodies would still be in my body and I would therefore test positive. This goes against everything I've read. Am I crazy or are both of these doctors wrong???

 

Just wanted to add that another option for you would be to get the gene testing.  If you're negative for the Celiac gene, then you cannot have Celiac - you most likely have gluten sensitivity.  No need to do the gluten challenge.  That said, I agree with the others that 1) your doctor is an idiot and/or ignorant and 2) you'd have to do a gluten challenge to get a reliable Celiac test at this point.

NanaV Rookie
NanaV
Posted

I've read that one can be tested for celiac via a stool sample, EVEN if one has been gluten-free for a while. Can this really be true?

GF Lover Rising Star
GF Lover
Posted

Celiac Disease CANNOT be diagnosed by a stool sample.  I wish is was that easy. 

 

Colleen

frieze Community Regular
frieze
Posted

Just wanted to add that another option for you would be to get the gene testing.  If you're negative for the Celiac gene, then you cannot have Celiac - you most likely have gluten sensitivity.  No need to do the gluten challenge.  That said, I agree with the others that 1) your doctor is an idiot and/or ignorant and 2) you'd have to do a gluten challenge to get a reliable Celiac test at this point.

FYI, we have more than one biopsy proven celiac that does don't have those genes that post on this board.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,109
    • Most Online (within 30 mins)
      7,748
    Kathy001
    Newest Member
    Kathy001
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.