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Question About Gluten Intolerance

chrissyinnj

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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!

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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.

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