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):

    Celiac.com Sponsor (A1-M):

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

“Non-celiac disease”

Luna21
 Share

Recommended Posts

Luna21 Rookie
Luna21
Posted

Hey, so I am one of those “non-celiac disease” people and it’s quite frustrating. I first had a blood test done ordered by my GP. (It was because I was losing/had lost a lot of weight over the past few visites.) I had kind of a horrible bumpy ride getting to where I am today. I was also referred to a GI to see if I had anything wrong too, because sometimes I remember after eating something like that I wouldn’t feel good & foggy mind but just thought it was in my head. Basically thinking back now I had the classic celiac type symptoms (I didn’t ever tell them my symptoms because I was so use to them I thought them normal) ie. Diarrhea every night, brain fog, loss of apatite, mood swings fatigue etc.
Ok now, back to the GI office. It was cold, I was scared and kinda excited because I don’t know what to expect. I’m this skinny kid and the GI comes in, he stands there, looks at me and smiles. I’m telling you this is a GREAT doctor, love him. So basically we found out that my blood work was “through the roof” I’m assuming it was celiac markers where it’s supposed to be under 15 something and mine was 115 or 515, can’t remember. Well was ever and he says “don’t freak out but I think you have celiac” Eventually I do an endoscopy and it’s negative. He thinks scene I’ve been avoiding gluten my gut has healed but he didn’t know so he said I have “non-celiac-gluten sensitivity” why ever that means. Seriously. I think when I’m older I’m going to do a gluten challenge and have a mother endoscopy done?

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with CD based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.

Luna21 Rookie
Luna21
Posted
  • Author
8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.

Yes, I try to look for the blood test numbers. And I have been gluten-free for a few months now and symptoms are gone. I just really want to know if it’s actually celiac. 

8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have the

Luna21 Rookie
Luna21
Posted
  • Author

I like what you said about how my blood test is not confusing, I think doctors should trust blood work more, because I had been before the endoscopy been eating a low gluten diet.

Scott Adams Grand Master
Scott Adams
Posted

The biopsy should never have been done if you were not eating gluten daily for the weeks leading up to it.

Luna21 Rookie
Luna21
Posted
  • Author
On 10/18/2020 at 12:10 PM, Scott Adams said:

The biopsy should never have been done if you were not eating gluten daily for the weeks leading up to it.

Okay, so I found the number but I don’t know what exactly for but it’s this: 

the normal range is 15 units/ml 

mine; 157 units /ml. 

RMJ Mentor
RMJ
Posted

You could have the blood test repeated - if it has gone down on a low gluten diet and your symptoms have improved that would certainly say that gluten is a problem for you.

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Luna, 

Have you had a DNA test to see if you have any of the genes for Celiac?  If you've got Celiac genes, and you improve on a gluten free diet like RMJ said, plus have such high blood test results, you and your doctors may want to accept all that as a Celiac diagnosis.

Damage to the small intestine is on a sliding scale.  The longer you've been exposed to gluten, the worse the damage is.  It's silly for doctors to tell people to do damage to their bodies so the doctors can be sure they made a diagnosis correctly.  

 

 

Scott Adams Grand Master
Scott Adams
Posted
14 hours ago, Luna21 said:

Okay, so I found the number but I don’t know what exactly for but it’s this: 

the normal range is 15 units/ml 

mine; 157 units /ml. 

Does it say what type of test this was? Was it ttg? Also, is the normal range for this test shown? Knowing these would be helpful.

  • 2 months later...
Luna21 Rookie
Luna21
Posted
  • Author

For some reason we don't have the test results, in paper that is; its on the doctors computer and the doctor sent it to the GI doctor. We don't even know what test it was exactly that was elevated but thats what made the GI doctor think it was Celiac. On my next check up I am going ask for it.

Scott Adams Grand Master
Scott Adams
Posted

I would request that your doctor provide you with the results, as they do have them.

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


  • Member Statistics

    • Total Members
      127,950
    • Most Online (within 30 mins)
      7,748
    Malik
    Newest Member
    Malik
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      According to research, consuming gluten can potentially trigger sudden mood swings and increased irritability in children, particularly those with gluten sensitivity or celiac disease, making them more likely to have tantrums or display behavioral issues; this is because gluten can trigger an immune response in the body, potentially impacting brain function and neurotransmitter levels.  When my son was diagnosed in 1976 when he was weaned his doctor told us that at 5 years old his kindergarden teacher would beg us to put him on Ritalin.  And so it did happen.  My son was on Ritalin though high school.  In the morning he was a devil who could not put on his socks. Half an hour after the morning dose he was an angel wanting to help mom get ready.  Talk about Jekyll and Hyde! Dr Danel Amen could be a good resource for you.   
    • MommaBear82
      3 year old gluten intolerance?

      By MommaBear82 · Posted

      Yes, it certainly can! My daughter has a reaction from just playing with Playdough. She doesn't get GI symptoms at first, just psychological mostly. It can get really bad. It's like night/day behavior. My daughter is eight, but started showing signs around 6.
    • cookiesyum
      Anyone else with very high HDL?

      By cookiesyum · Posted

      The easiest way to remember the difference between the cholesterol types is HDL;   H=healthy equals healthy (omega 3, 7, limit 6 & 9 MCFA'S =Medium Chain Fatty Acids. 3= coconut oil, 7= sunflower oil, avocado. The higher your HDL the healthier you are & less likely to experience strokes, clogged arteries Etc. You can even use cold expeller pressed coconut oil on your skin and that is the best kind of coconut oil to eat as well. You want your HDL much higher than your LDL, it will help you stay healthy.   LDL;    L=Lousy. Meat fats, processed fats.  The higher your LDL is the more likely you will have strokes, clogged artery is, heart disease, fatty liver.   Then there's lipids... they are the culprit to be blamed for many heart attacks and things like that they are very small round particles that transport fats. You can have a low overall cholesterol reading and most of it be healthy cholesterol and have a ton of lipids and there's nothing you can do to change the lipid count. High number of lipids is very dangerous.   I'm going on statins is extremely dangerous if you ask me it's just completely my opinion, because I have seen so many of my elderly friends bleed to death internally because of the statins. I mean you wouldn't take all the oil and grease out of your car or a motorcycle and then try to drive it that way would you? You see that's what statins do they remove all of your bodies fats and it doesn't matter whether it's healthy fats or a lousy fats. It removes all of them and then your body can't function properly. You have to have fats to keep your skin supple and to stay warm. Your body also needs fats to digest & process certain nutrients, amino acids & vitamins.   Your brain is composed of fat so is that something you really want to remove with a pill every morning and night?   The thing about statins is that they also make the blood vessels and capillaries permeable. So this is how my friends who were on cardiac medication for a long time and statins ended up bleeding internally to death.   If you want to make sure that your heart is healthy, take odorless garlic at night and magnesium, vitamin K & calcium.     
    • pdm1981
      Glutening symptom? oily stool

      By pdm1981 · Posted

      It's also a symptom of EPI.
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      Yes.  Proportionately a small piece to a toddler is like a whole slice to an adult.  This is an important clue.  She was doing well, accidentally ate gluten and later the old behavior returned. I remember reading posts here of people reacting to a kiss from someone who had just eaten gluten. Recent research indicates that 40% of first degree relatives of someone with Celiac have undiagnosed Celiac Disease.  Father, mother, siblings.  There is a whole list of symtoms of "silent celiac".  Here is an article of symptoms possibly mistaken for other causes than Celiac Disease.  When I finally stopped gluten at 63 years old, I counted 19 things that improved, including lifelong mouthbreathing.  I never smelled bad things, so I as a kid, I learned to respond to the other kid's response in order to not seem weird. I really recommend you pursue testing for all the family if you can, and the whole family following GFD.  It is difficult at first, but the benefits will be worth it.  
×
×
  • Create New...