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

A year and a half of test confusion...

JA917
 Share

Recommended Posts

JA917 Rookie
JA917
Posted

Hi all,

I've really been on a rollercoaster journey the past year and a half while trying to narrow down whether I have Celiac or not.  I was hoping that if I can give you my (potential) evidence for Celiac vs. potential evidence against, you all can weigh in on what you think?  

FOR: 

-Positive for one Celiac gene (DQ2).

-Chronic reflux that seemed to come out of nowhere a few years ago.  I also have mild gastritis, as per an endoscopy.

-Chronic urticaria (but transient, not fixed hives). I intermittently get hives/itchy skin that dissipates within a half hour or so.  I have been allergy tested and am not allergic to anything, including wheat.  But if I take a 24-hour Zyrtec, it does stop the hives for a couple weeks.  

-Tested low positive TWICE for only one of the Celiac antibodies.  I was tested for Immunoglobulin IgA, tTG IgA and IgG, and DGP IgA (*this was the low positive) and IgG, Endomysial IgA.  All others were negative, twice.  It also seems curious that the DGP IgA was the one that was positive being that I'm not IgA deficient?

-Consistently low iron.  I'm not anemic, as my hemoglobin is still low-normal, but my iron and ferritin are low.  We supplemented for a few months and they did increase at the normal rate, but dropped again after stopping.  I don't eat meat, but my doctor doesn't think they should've dropped like that regardless of my diet.   

-Joint pain in my right knee, eventually leading to an osteoarthritis diagnosis.

AGAINST:

-Just tested again for Celiac panel and ALL results were normal.  However, I realized I have been eating less gluten without even realizing it/trying to.  I started intermittent fasting a few weeks back pre-testing and have been trying to eat more fruits, veggies and protein -- naturally leaving less space for gluten.  Perhaps my level only dropped down to normal because of that, and because it wasn't very high to begin with?

-Endoscopy one year ago was normal outside of the gastritis.  No evidence of villi blunting or abnormal biopsies.

-No weight loss.  In fact, I'm overweight.

-Normal colonoscopy (I had this done just because I turned 40 in the middle of all of this and it was "time.")

-Normal BMs for the most part.  Occasional constipation when I fast.  No issues with diarrhea. 

-No stomach pain of any sort.

-Normal B12 panel.  No deficiencies of any kind outside of iron.

I realize not all of these indicate Celiac specifically and may be signs of something else, I just wanted to provide as much info on potentials as I can!  And although I intend to, I haven't really had the opportunity yet to try a TRULY gluten-free trial because this testing has all been spread out -- and I know you have to be actively eating gluten for accurate results.  I have a capsule endoscopy scheduled in a couple weeks, so I'm hoping for more answers based on that, but was wondering what any of you may predict my diagnosis to be so far with this information?!  I am thinking that Celiac may be my unfortunate diagnosis and that I'm just catching it very early (thankfully).  All opinions welcome.  Thank you! 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

My best guess would be NCGS. Some experts in the field of gluten disorders believe NCGS can be a precursor to the development of celiac disease. Whether NCGS or celiac disease, the antidote is the same, total abstinence from gluten for life or at least until some scientific breakthrough occurs that allows those with gluten disorders to consume gluten. I think this is your next step, i.e., seriously committing to putting gluten in the rear view mirror of your life for good.

JA917 Rookie
JA917
Posted
  • Author
1 minute ago, trents said:

My best guess would be NCGS. Some experts in the field of gluten disorders believe NCGS can be a precursor to the development of celiac disease. Whether NCGS or celiac disease, the antidote is the same, total abstinence from gluten for life or at least until some scientific breakthrough occurs that allows those with gluten disorders to consume gluten. I think this is your next step, i.e., seriously committing to putting gluten in the rear view mirror of your life for good.

Thank you for your response!  I am actually genuinely looking forward to removing gluten (after all my testing is done) to see how I feel... My remaining question for you is:  Are positive antibodies ever seen with NCGS?  My understanding was that those only show up with Celiac since NCGS doesn't involve the same type of immune response as Celiac.  But I'm seeing conflicting information in my research online... 

Scott Adams Grand Master
Scott Adams
Posted

Yes, there is a grey zone where some people with elevated blood antibodies that don't quite rise to the level of positive for celiac disease might be in a pre-celiac disease state, and will eventually test positive, while others in this grey area may never test positive. I would say that many in this group might have NCGS, especially if their symptoms go away while on a gluten-free diet.

JA917 Rookie
JA917
Posted
  • Author
1 minute ago, Scott Adams said:

Yes, there is a grey zone where some people with elevated blood antibodies that don't quite rise to the level of positive for celiac disease might be in a pre-celiac disease state, and will eventually test positive, while others in this grey area may never test positive. I would say that many in this group might have NCGS, especially if their symptoms go away while on a gluten-free diet.

Thank you!  I think what I'm currently worried about is, provided that my capsule endoscopy is negative and NCGS is then presumed, how to get a Celiac diagnosis down the road if I do go gluten free now and find relief (without worrying about cross contamination).  The gluten challenge seems like such a nightmare!  But, if my test results do indicate NCGS as a possible prelude to Celiac down the road, that makes me hesitate on how to proceed with or without gluten currently, whether to worry about cross contamination currently, etc.. I hope that makes sense!  

Scott Adams Grand Master
Scott Adams
Posted

Given your long list of symptoms it would make sense to see if a 100% gluten-free diet helps relieve them, especially the anemia, and if so, it would make sense to just stay 100% gluten-free. Also, capsule endoscopy is not ideal for diagnosing celiac disease, as subtle villi damage cannot be detect by it.

JA917 Rookie
JA917
Posted
  • Author
3 minutes ago, Scott Adams said:

Given your long list of symptoms it would make sense to see if a 100% gluten-free diet helps relieve them, especially the anemia, and if so, it would make sense to just stay 100% gluten-free. Also, capsule endoscopy is not ideal for diagnosing celiac disease, as subtle villi damage cannot be detect by it.

Gotcha.  I'll give 100% gluten-free a whirl after my testing concludes.  I know the traditional endoscopy is the gold standard, but I've already had that done and it was normal, so my gastro wants to do a capsule endo to try to cover more surface area and see if she can see anything further than the traditional endo... If I do have Celiac, I just seem to be on the very early end, I think.

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

JA917 Rookie
JA917
Posted
  • Author
4 minutes ago, Scott Adams said:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

I am actually in the middle of this article currently already! :)  Thank you.  This website is extraordinarily helpful.

trents Grand Master
trents
Posted

I just want to reinforce what Scott said and that is we have tended to think in these neat little black and white categories of it's either celiac or NCGS when in reality it may not be quite that neat. There's just a lot we don't know and the immune system is very complex. I often wonder if I had been gluten free as a child if I would have avoided developing celiac disease as an adult. I think there is also this misconception that if you have NCGS, gluten is not harmful, it just creates discomfort and inconvenience.

RMJ Mentor
RMJ
Posted

Have you considered eating plenty of gluten from now until your capsule endoscopy? If you truly have celiac disease that would increase the chances of damage being seen.

JA917 Rookie
JA917
Posted
  • Author
1 hour ago, trents said:

I just want to reinforce what Scott said and that is we have tended to think in these neat little black and white categories of it's either celiac or NCGS when in reality it may not be quite that neat. There's just a lot we don't know and the immune system is very complex. I often wonder if I had been gluten free as a child if I would have avoided developing celiac disease as an adult. I think there is also this misconception that if you have NCGS, gluten is not harmful, it just creates discomfort and inconvenience.

Thank you.  I certainly take it seriously, no matter what my diagnosis is, and I do a lot of my own research also.  I just want to make sure I'm doing everything "right" as much as I can without jeopardizing any test result accuracy since this may be my last shot at getting an official diagnosis since I plan to go fully gluten-free afterwards!

45 minutes ago, RMJ said:

Have you considered eating plenty of gluten from now until your capsule endoscopy? If you truly have celiac disease that would increase the chances of damage being seen.

Yup, I am certainly making a current effort to eat plenty of it!  Not only for test accuracy, but I figure I may as well enjoy it now just in case it's my last go at it also.

knitty kitty Grand Master
knitty kitty
Posted

Since you're having a last hurrah with gluten, request another round of blood tests for celiac antibodies.  Make sure you're eating ten grams or more daily for those few weeks before your capsule endoscopy.  You probably weren't eating a sufficient amount of gluten needed to provoke sufficient antibody production. 

 

JA917 Rookie
JA917
Posted
  • Author
1 minute ago, knitty kitty said:

Since you're having a last hurrah with gluten, request another round of blood tests for celiac antibodies.  Make sure you're eating ten grams or more daily for those few weeks before your capsule endoscopy.  You probably weren't eating a sufficient amount of gluten needed to provoke sufficient antibody production. 

 

I was just thinking this same thing - requesting repeat testing prior to giving up gluten. Makes sense. Thanks!

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
      127,512
    • Most Online (within 30 mins)
      7,748
    AvaVI
    Newest Member
    AvaVI
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • badastronaut
      Still unsure.....

      By badastronaut · Posted

      Dear forum members, I’m still trying to find out whether or not I actually have gluten sensitivity or not. Recent blood test showed a slightly elevated Bilirubine and Lipase but an abdominal ultrasound showed no problems with the liver or pancreas. My zinc and folic acid where both too low. When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal. I also have been quite anxious and little bit down for quite some time now and it seems to correlate with my gluten intake. The problem is that my colonoscopy showed no damage to my gut and my blood test for celiac always come back negative. Can you be gluten sensitive without damage to your villi? (I believe that’s what is normally seen in celiac disease). Thanks for helping! I don’t seem to get anywhere with my doctor so I thought I’d give this forum another try.  
    • knitty kitty
      Can gallbladder issues cause symptoms of celiac disease?

      By knitty kitty · Posted

      Welcome to the forum, @robingfellow and @Mr-Collateral531, I also had to have my gallbladder removed in emergency surgery.  The gallbladder uses lots of thiamine vitamin b1 to function.   The gallbladder cannot secrete bile if it doesn't have sufficient thiamine.  Thiamine provides our muscles and glands energy to move and secrete needed enzymes and hormones.  The thyroid is another gland that requires lots if thiamine to function and secrete hormones.   Our brains, just thinking at a desk job, requires as much thiamine as our muscles do if running a marathon.   Migraines are linked to thiamine deficiency. Thiamine is the first of the eight B vitamins that our body needs. Thiamine can only be stored for three weeks at most.  Our thiamine stores can be depleted in as little as three days.  We need more thiamine when we have a physical injury (like recovering from surgery or fighting the flu), if we're emotionally stressed or traumatized, and if we're physically active.  Thiamine, like the other B vitamins, is water soluble and easily excreted in urine or most in diarrhea.  B vitamins are commonly poorly absorbed in Celiac Disease.  Thiamine and the other B vitamins need to be taken together because they interact with each other to make life sustaining enzymes.  Thiamine deficiency can affect individual organs.  Gallbladder dysfunction is connected to thiamine deficiency, as is hypothyroidism.    Migraines are connected to thiamine deficiency.  Gastrointestinal Beriberi (abdominal pain, vomiting, etc.) is a result of thiamine deficiency.  Tachycardia and fatigue are also symptoms of thiamine deficiency.   Thiamine and magnesium make enzymes that are essential for life.   Thiamine is needed to absorb certain minerals like iron.  Anemia and thiamine deficiency frequently occur together.  Thiamine deficiency can cause poor blood cell production (including low antibody production).   Thiamine interacts with other vitamins and minerals.  Vitamin D is not utilized by the body until turned into an active form by Thiamine. Thiamine is safe and nontoxic even in high doses.  High doses of thiamine correct deficiencies quickly which prevent further health deterioration.  A one a day type multivitamin is not sufficient to correct vitamin and mineral deficiencies that occur in the malabsorption of Celiac Disease.   The Gluten free diet is low in vitamins as they are not required to be enriched with vitamins lost in processing.  Supplementing with thiamine and the B vitamins boosts their absorption.   Helpful Reading: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/ P. S. Try a DNA test to see if you have any known genes for Celiac Disease before doing a gluten challenge.
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the reply ! I am asking because tomorow i have egd and nobody told me not to eat gluten-free oats… and i was scared that it could ruin my biopsy results… 
    • trents
      Certified gluten free oats

      By trents · Posted

      Yes, I would think that for the 10% of celiacs who can't tolerate oats it would cause villous atrophy just like gluten. No, it would not produce marsh 3b villous atrophy in a couple of days. Nothing will produce measurable villous atrophy that fast. It takes at least two weeks of at least 10g of gluten consumption daily (10g is the amount found in about 4-6 slices of wheat bread) to develop measurable villous atrophy and even then probably not 3b villous atrophy. Are you asking these questions in because you are considering taking on a gluten challenge?
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
×
×
  • Create New...