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

Question About Gluten Intolerance

chrissyinnj

Recommended Posts

chrissyinnj Apprentice
chrissyinnj
Posted

So my child may be NCGS. His celiac labs came back negative, No numbers with it though. We've done it more than once and I was hoping to see whether the number was moving, even being negative. But the second time they didn't provide a number. He has only been on gluten about 10 weeks and the first test he was only on 4 weeks. (His obvious symptoms did respond to the gluten-free diet)

His AGA came out about 4x the limit of normal. So he is definitely has that.

My concern was that at one point he had a stomach ulcer that ruptured and the doctors couldn't let us why (no hpylori). I found a study linking celiac disease and this type of ulcer. I really don't want it to happen again. Anyone know of this happening in someone that is only GS? He may also have reflux, however his gi never addressed this and I never saw the results to ask, until now. Even after 8 weeks on nexium his biopsy still showed "mild chronic esophagitis" and slight inflammation from the sites. I would have thought it would be healed by then. He also has adhd and a handful of other problems.

*Should I just move on with the GS diag? I know the treatment is the same. However, do doctors treat GS as less important than celiac disease? He wasn't diag by his regular doctor.I don't know how they will accept the diagnosis. What has been your experience?

*Also, is GS something where we can try adding it back in a few years, or is this lifetime?

Thanks for your insights!

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

Celiac.com Sponsor (A8-M):


beebs Enthusiast
beebs
Posted

So my child may be NCGS. His celiac labs came back negative, No numbers with it though. We've done it more than once and I was hoping to see whether the number was moving, even being negative. But the second time they didn't provide a number. He has only been on gluten about 10 weeks and the first test he was only on 4 weeks. (His obvious symptoms did respond to the gluten-free diet)

His AGA came out about 4x the limit of normal. So he is definitely has that.

My concern was that at one point he had a stomach ulcer that ruptured and the doctors couldn't let us why (no hpylori). I found a study linking celiac disease and this type of ulcer. I really don't want it to happen again. Anyone know of this happening in someone that is only GS? He may also have reflux, however his gi never addressed this and I never saw the results to ask, until now. Even after 8 weeks on nexium his biopsy still showed "mild chronic esophagitis" and slight inflammation from the sites. I would have thought it would be healed by then. He also has adhd and a handful of other problems.

*Should I just move on with the GS diag? I know the treatment is the same. However, do doctors treat GS as less important than celiac disease? He wasn't diag by his regular doctor.I don't know how they will accept the diagnosis. What has been your experience?

*Also, is GS something where we can try adding it back in a few years, or is this lifetime?

Thanks for your insights!

How old is your Son?

This sounds so similar to what I have been going through with my eldest. The only thing he didn't have is a ruptured stomach ulcer. But he became severely anememic to the point where he couldnt walk, couldn't even breathe properly, just laboured breathing whilst lying on the couch which lasted about 8 weeks, he developed a heart murmur because of it. He kept falling over a splitting open his chin requiring stitches, it was so scary. He had all kinds of crazy symptoms, ulcers in his mouth, bad stools, no weight gain in 18 months, severe gastritis etc etc, his bloods and biopsy were both negative but they found inflammation in is intestines and esophagitis as well (which is inflammation that can be cause by reflux/ GERD.

In relation to the stomach ulcer - that can be caused by reflux - the acid etc. One of my main symptoms is severe GERD which I was medicated for until I went gluten free - the day after I went gluten free I never need reflux meds again -that was 10 months ago!

To be honest - I take the testing with a grain of salt -especially in young children - it can be very unreliable. Due to my family history I feel he has a much higher chance of celiac than NCGS. And so therefore at this point in time he is gluten free (and doing much better), If I feel that we can't live without a diagnosis then I will give him a challenge later on - but I may not.

You dont really need a diag - you don't need permission. Plus if you are in the US isn't it far better in terms of insurance to not be diagnosed??

chrissyinnj Apprentice
chrissyinnj
Posted
  • Author

He's 18. He is not anemic, his D3 is low but not his calcium. He will go gluten free regardless. I was just wondering if he becomes sick and needs meds or such, will a doctor take GS into account or say its nonsense since it seems many think its celiac or nothing. His regular doctor seems clueless, so we went an alternative route. But blood tests are blood tests regardlesss of who orders them.

Also, he needs a letter from his doctor to be eligible for a special diet at school.

I'm not sure how insurance interprets it.

beebs Enthusiast
beebs
Posted

I think it depends on the Dr, my Dr has gluten intolerance so she is very gluten intolerance friendly. Good luck with yours.

Archived

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

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


  • Member Statistics

    • Total Members
      130,010
    • Most Online (within 30 mins)
      7,748
    Shuki
    Newest Member
    Shuki
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • ShariW
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By ShariW · Posted

      These look great!  I follow several people who frequently post gluten-free recipes online (plus they sell their cookbooks). "Gluten Free on a Shoestring" and "Erin's Meaningful Eats>"
    • Scott Adams
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Scott Adams · Posted

      Sounds great, we also have lots of recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/
    • ShariW
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By ShariW · Posted

      When I had to go gluten-free, the rest of my family still ate gluten. They still eat regular bread products and crackers, but there are no other gluten-containing foods in the house. I bought a separate toaster that is only used for gluten-free products, and thoroughly cleaned all cookware, dishes and surfaces. We do have to be very careful with cross-contact, for instance when someone else is making a sandwich with wheat bread. Then I went through my cupboards and pantry, I set aside everything else with gluten and gave it away - flour and baking mixes, pasta, etc. So when I cook any recipe that calls for flour (perhaps for thickening) or bread crumbs like Panko, I only use gluten-free. My cupboard now holds gluten-free baking flour, tapioca flour, rice flour, almond flour, gluten-free oats, gluten-free grits, gluten-free cornmeal, and a few gluten-free baking mixes for occasional use. On the odd occasion when we have pasta, it is gluten-free - nobody notices the difference in the "new" lasagna. I have found several good recipes that are gluten-free and everyone loves them. A family favorite is the Tarta de Santiago, a naturally gluten-free treat made with almond flour.
    • Scott Adams
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By 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.):    
    • Scott Adams
      How many people also get sick from the following prolamins?

      By Scott Adams · Posted

      Exactly, everyone with celiac disease technically has an "intolerance" to these: Wheat: The prolamin is called gliadin. Barley: The prolamin is called hordein. Rye: The prolamin is called secalin. Around 9% of celiacs also should avoid oats (but around the time of diagnosis this may be much higher--some will have temporary intolerance): Oats: The prolamin is called avenin. I had to avoid this for 1-2 years after my diagnosis until my gut healed: Corn: The prolamin is called zein. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...