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

Follow Ups Needed/screening?

livingglutenfree

Recommended Posts

livingglutenfree Rookie
livingglutenfree
Posted

I was diagnosed (confirmed with biopsy) with Celiac at 14 months with the very classis symptoms. (although I am told even with all of the symptoms it took months and many trips to docotors and stays in hosipital.) I was placed on a challenge diet when I was 4 (I think). During the challenge my mom reported that I had very little outward symptoms but the biopsy confirmed damage was still being done in the intestine.

As a child/teenager I don't remember being able to identify if I ate something with gluten. There were of course cases where after the fact I knew I had been glutened (change of ingredients - labeling is much better than it was) However, I couldn't always identify when it happend based on symptoms.

My family doctors have never given me much direction on when, if and what I should be doing to follow up with my celiac. I did have a biopsy and bone density test done about 5 years ago. Against my doctors wishes I went and saw a gastro at the Mayo clinic. Everything checked out just fine. This was important for me to do before I chose to get pregnant - wanted to make sure my body was completely healthy.

What worries me is that I can't rely on outward symptoms to show me that I have accidently got gluten in my system. I follow a gluten-free diet as closely as I can, but as I have recently started reading posts on here I am finding out that there are many products whose ingredient lists appear gluten-free but people are getting sick from cross contamination during production.

So....should I be getting the anitbody test done every so often? Any other tests that I should be aware of?

Thanks

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

Celiac.com Sponsor (A8-M):


cat3883 Explorer
cat3883
Posted

I was diagnosed in October 2008. My GI told me I will be tested every 6 months. For how long I dont know. I am sure it depends on my bloodwork.

Green Eyes Rookie
Green Eyes
Posted

I haven't figured out if not having outward symptoms is a blessing or a curse. I guess it is all in how you look at it.

I do not have a reaction with small amounts of gluten. I do get mild symptoms with larger amounts. I had to find a new GI doctor who would actually run the blood test ever so often. The first GI doctor just told me all I had to do was follow a gluten-free diet and I was fine. Of course she doesn't have a clue what that entails.

My new GI doctor was totally confused to why the first doctor would not work with me. He is concerned enough that he sent me for blood test (no results just yet) and a bone density test. I'm sure part of that was due to my age and not knowing how long I have had celiac.

I would suggest finding a doctor to run test as needed.

Best wishes on your family to be!!!

Jennifer

sbj Rookie
sbj
Posted
I was diagnosed in October 2008. My GI told me I will be tested every 6 months. For how long I dont know. I am sure it depends on my bloodwork.

My gastro also advised that we would re-do the bloodwork every 6 months. I'm also unsure about how long this will go on. My intern also suggested a follow-up bone density scan at 2 or 3 years to check on progress of osteopenia. Since I am asymptomatic I think it is really important to get the bloodwork done. This will tell you if you need to be more vigilant. I'd say that a clean biopsy is a good sign!

WW340 Rookie
WW340
Posted

I follow up with my GI every 6 mos. for bloodwork. He does not repeat the celiac tests, but he checks all my vitamin levels, liver enzymes, CBC, and thyroid. I also have bone density test every 2 years.

newlyfoundglutener Newbie
newlyfoundglutener
Posted

<_<

I am debating about the biopsy. Don't you have to be off the diet for a little while for the doctor to see the results? I really don't want to have any worse symptoms than I already do when I am "glutened" in some way.

Tracy

ravenwoodglass Mentor
ravenwoodglass
Posted
<_<

I am debating about the biopsy. Don't you have to be off the diet for a little while for the doctor to see the results? I really don't want to have any worse symptoms than I already do when I am "glutened" in some way.

Tracy

If you do choose to biopsy for diagnosis you need to go back on a full gluten diet for about 3 months. Even then there is always the risk of a false negative. If you are having a biopsy just to check if you are healing then a challenge is not needed.

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

Celiac.com Sponsor (A8-M):


Archived

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

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

  • Member Statistics

    • Total Members
      133,217
    • Most Online (within 30 mins)
      7,748
    Beanography
    Newest Member
    Beanography
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Watch this space!  😊
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Low iron and vitamin d

      By lizzie42 · Posted

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.