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

Recently Diagnosed Celiac- Need advice


Anmol

Recommended Posts

Anmol Newbie

Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things: 

1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi 

2. Why is she asymptomatic? 

3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat? 

4. Since she is asymptomatic, can we sometimes indulge in a gluten diet?

-----------------------------------------------------------------------------------------------

Deamidated Gliadin, IgG - 64 (0-19) units

tTG IgA -  >100 (0-3) U/ml

tTG IgG - 4   (0-5) Why is this in normal range?

Endomysial Antibody - Positive 

Immunoglobulin A - 352 (87-352)

------------------------------------------------------------------------------------------------

Thanks for help in advance, really appreciate! 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the community forum, @Anmol!

There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests.

There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it?

Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel.

GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.

 

Anmol Newbie

Thanks this is helpful. Couple of follow -ups-

that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever? 
 

what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 

trents Grand Master

I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease.

If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.

 

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,015
    • Most Online (within 30 mins)
      7,748

    nelda1965
    Newest Member
    nelda1965
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BertoleAmur
      I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better.
    • Scott Adams
      Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.
    • aperlo34
      Hi Scott, thanks for the reply.    I’m currently taking  3000IU vitamin D3 centrum multivitamin  500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2)   I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me.  Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500.    Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅   I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body! Thank you so much in advance for any input/guidance.    
    • Yaya
      I never had muscle twitching that I would relate to Celiac Disease (celiac disease).  However, I now have Long Covid and muscle twitching, burning, and other issues cropped up with that.  Predating all was restless leg syndrome (RLS).  Are you talking about RLS?  I've had that since '99.  It gets progressively worse.  
    • Scott Adams
      Hello @aperlo34, what types of supplements are you taking? Your symptoms could be related to vitamin/mineral deficiencies.   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. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • Create New...