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

Not Sure If Celiac

scdurs

Recommended Posts

scdurs Newbie
scdurs
Posted

I was experiencing stomach pains and gasiness and was referred to a gastroenterologist.  She performed a colonoscopy (I am 50) and an endoscopy. I had a positive biopsy leading to my celiac diagnosis. At the time, May of 2013, they said that was the gold standard for testing, so I accepted it as fact.  Still had pain issues, but less gas and I was no longer anemic.  My blood work for tissue transglutaminase ab (iga) was 8 after being gluten free for a few months. The lab report said anything less than 20 is negative, although others in this forum seem to indicate it should be less than 4. Also had abdominal ultrasound done and they found nothing wrong.

 

Problem is I don't feel any different (stomach pains) even though it is better than it was. My gastro doctor said a celiac may not feel any different, or may not realize they have consumed gluten at all, unlike a gluten intolerant person. I have been gluten free since May of 2013, but have made a couple of mistakes and consumed food that my contain gluten, drank a beer without thinking, and I never felt anything. Have not noticed much improvement other than the reduction in gas, and improvement in blood count.

 

I'm beginning to think I need to do the genetic testing to rule out any doubt. What do you think?

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

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi and Welcome to the Forum!

 

I've never heard of a positive biopsy turning out to be anything other than Celiac - but if I'm wrong about this I'm sure someone will be quick to jump in and correct me.  If you aren't 100% gluten-free (i.e. avoiding cross-contamination, etc.) then you can't expect all of your symptoms to go away.  Not sure why you wouldn't have a noticeable reaction to gluten after having been gluten-free but I think for some people it just happens that way.  Also wanted to mention that the genetic test doesn't really rule out any doubt... it is estimated that approx. 30% or so of the population has the genes but only about 1% actually get Celiac.  And although it is much more rare, there are folks who do not have the genes but do have Celiac.

kareng Grand Master
kareng
Posted

Your blood work should be negative after a few months gluten free.  You can't use that to prove you don't have Celiac.    

notme Experienced
notme
Posted

if you have had a positive biopsy, why would you not be sure if you have celiac?  and that means gluten free for ever.  you have only been gluten free since last year>  i am on my 4th year and i am still seeing improvements.  maybe you are still getting cc'd somewhere.  if you eat out alot, chances are you haven't been very gluten free.

scdurs Newbie
scdurs
Posted
  • Author

Thanks for the comments. I have recently read that the biopsy is not necessarily proof, but the genetic testing is now considered the gold standard. Not only had I considered that they meant a negative biopsy is not proof, but thought they also meant a mis-read positive biopsy is possible. After all, a biopsy has to be interpreted by a human, right? I'm not a doctor and don't know how easy or difficult it is to interpret. My gastro doctor had another doctor verify her findings, so I'm assuming there is room for interpretation.

 

Anyway, yes I had already resigned myself to the fact that I am gluten free for the rest of my life, no going back. But sometimes the doubts creep back in. I asked my doctor about all of these people who rave that they feel so much better after going gluten free, while I have not noticed any difference at all.  My doctor told me that since I am a celiac, I may not notice anything at all.  The only real improvement has been the return of my hemoglobin A1C counts. I guess I was hoping for more.

scdurs Newbie
scdurs
Posted
  • Author

Hi and Welcome to the Forum!

 

I've never heard of a positive biopsy turning out to be anything other than Celiac - but if I'm wrong about this I'm sure someone will be quick to jump in and correct me.  If you aren't 100% gluten-free (i.e. avoiding cross-contamination, etc.) then you can't expect all of your symptoms to go away.  Not sure why you wouldn't have a noticeable reaction to gluten after having been gluten-free but I think for some people it just happens that way.  Also wanted to mention that the genetic test doesn't really rule out any doubt... it is estimated that approx. 30% or so of the population has the genes but only about 1% actually get Celiac.  And although it is much more rare, there are folks who do not have the genes but do have Celiac.

Interesting... Thanks for sharing the data on the genetic testing. When I was diagnosed the doctor was looking for the cause of abdominal pain and anemia. The doctor was looking for stomach ulcers during the endoscopy and biopsied the small intestine at that time and found the celiac disease. So it was probably more of a "search for other causes" than it was "looking for proof of celiac," if that makes a difference. I haven't had all of the symptoms that everyone describes, so maybe I have not been celiac for very long. My anemia went away fairly quickly, so I'm thinking I didn't have much damage yet. I question the biopsy only because it is interpreted by a human, and in my case it seemed that it was not easy to determine from the biopsy. Maybe I'm reading more into the need for the second doctor's review than I should.  It just makes me wonder how difficult it is to read these biopsies.  Anything that needs to be interpreted can be mis-interpreted, and it seems nothing about celiac disease is 100% for certain at this time.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

FWIW.. I didn't have any obvious symptoms at all when I was diagnosed.  I requested the blood test because Celiac is in my family and I was getting routine blood work done anyhow so I figured I'd ask to have that one thrown in too - fully expecting it to be negative.  My endoscopy three weeks later showed moderate to severe villi damage.  So you're right... there's nothing about Celiac Disease that is 100% certain.

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

Thanks for the comments. I have recently read that the biopsy is not necessarily proof, but the genetic testing is now considered the gold standard. Not only had I considered that they meant a negative biopsy is not proof, but thought they also meant a mis-read positive biopsy is possible. After all, a biopsy has to be interpreted by a human, right? I'm not a doctor and don't know how easy or difficult it is to interpret. My gastro doctor had another doctor verify her findings, so I'm assuming there is room for interpretation.

 

Anyway, yes I had already resigned myself to the fact that I am gluten free for the rest of my life, no going back. But sometimes the doubts creep back in. I asked my doctor about all of these people who rave that they feel so much better after going gluten free, while I have not noticed any difference at all.  My doctor told me that since I am a celiac, I may not notice anything at all.  The only real improvement has been the return of my hemoglobin A1C counts. I guess I was hoping for more.

 

The genetic test IS NOT the gold standard for Celiac testing.  Please make sure you are getting your information from reputable sources ie: not friends and not some odd person on the Internet.  This will only cause you confusion.

 

Tighten up that diet and go over your Kitchen protocols.  And you WILL test negative on blood test AND Negative on Biopsy after being gluten free for a length of time.

 

Good luck to you.

 

Colleen

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    2. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    3. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
    4. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      @tiffanygosci, Hello. I apologize for your thread being hijacked. I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain. My cycle returned early after I had my...
    5. trents
      - trents replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
×
×
  • 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.