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So Now What?

pain*in*my*gut

By pain*in*my*gut
in Coping with Celiac Disease

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pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I got a letter in the mail today (thanks for the personal phone call...not). My biopsy results from last weeks scope were negative. I was anticipating this, as my ttg levels were normal, which pointed to no intestinal damage (yet). My GI has released me from his care, told me to follow up with my primary doc for any "further problems". :angry:

So do I have Celiac or not? For me, personally, the official dx doesn't matter, I am still going gluten free. But I have a 6 year old who has a lot of the same symptoms I have. I am afraid that without a Celiac dx for me, I won't be able to get his pediatrician to order the bloodwork screen. My GP is very supportive, but she also told me not to worry about my son unless he isn't growing properly or has "sprue". :huh: We all know that you don't have to have those symptoms to have issues with gluten!! I would just make him gluten free, but I would need some kind of "proof" for family and school to comply with the diet.

I am suprised at how dissapointed I am to have normal test results! I should be happy, but now I feel like it's going to be an uphill battle to get anybody to take this seriously! :( Is there any way to get a Celiac dx without a positive biopsy?? Don't get me wrong, I don't WANT this disease, but I feel like it would make things so much easier to have it on paper....

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JoshB Apprentice
JoshB
Posted

You had a positive DGP, right?

So you had a positive test which has a 95% specificity rating (and probably only that low because they haven't done 12/24 month followup studies yet). You're comparing that to a test(biopsy) with a 15% false negative rate. I would think that this is pretty suggestive of celiac disease in the very early stages. TTG seems to be related to the extent of intestinal damage; that also backs up that hypothesis. You should be happy!

If your pediatrician doesn't want to run blood tests then you could always have it done yourself. I certainly think you'd be better off asking the doc to do it first, though.

ravenwoodglass Mentor
ravenwoodglass
Posted

It would be a good idea to get a copy of the biopsy report. Some doctors for some reason don't recognize the early changes seen with celiac or want to see the villi totally destroyed before they will diagnose. False negatives are also common for various reasons. Your positive blood test is really enough to diagnose as that test is very specific for celiac. Your kids should be screened periodically even if they don't show obvious symptoms. If your present ped won't do it then find a new ped.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted
  • Author

You had a positive DGP, right?

So you had a positive test which has a 95% specificity rating (and probably only that low because they haven't done 12/24 month followup studies yet). You're comparing that to a test(biopsy) with a 15% false negative rate. I would think that this is pretty suggestive of celiac disease in the very early stages. TTG seems to be related to the extent of intestinal damage; that also backs up that hypothesis. You should be happy!

If your pediatrician doesn't want to run blood tests then you could always have it done yourself. I certainly think you'd be better off asking the doc to do it first, though.

Yes, my DGP was really positive!! I also have an elevated CRP (inflamation indicator, non-specific). In 2007 after a bowel resection, I developed an obstruction due to excessive scarring and inflamation, lost 20 lbs and was pooping 20 X's a day!! They did a Celiac screen on me at that time, and it was supposedly normal. But I recently got copies of that "normal" screen, and my Anti Gliadin ABS were on the very high end of normal (my IgG was 9, with anything higher than 9 being positive). Ever since then I have been suffering with all kinds of crap (see my siggy). So, yeah, I think it's Celiac, but for whatever reason it's not attacking my small intestines enough to pick up on biopsy. It sure is attacking the rest of me, though! :(

Now if I can just convince my PCP, hubby, family, and child's peditrician that I have it.... :(

pain*in*my*gut Apprentice
pain*in*my*gut
Posted
  • Author

It would be a good idea to get a copy of the biopsy report. Some doctors for some reason don't recognize the early changes seen with celiac or want to see the villi totally destroyed before they will diagnose. False negatives are also common for various reasons. Your positive blood test is really enough to diagnose as that test is very specific for celiac. Your kids should be screened periodically even if they don't show obvious symptoms. If your present ped won't do it then find a new ped.

Yes, this is a good idea, since I have had questionable "normal" results in the past...

Thank you, Raven!

Katrala Contributor
Katrala
Posted

If it were me, I wouldn't completely erase the possibility of celiac, but I also wouldn't stop looking for an answer, either.

You don't have to have celiac in order to have a gluten sensitivity. Gluten may very well be the cause of your problems and a gluten-free diet may help even if it's not celiac.

What about any other food allergy testing?

Takala Enthusiast
Takala
Posted

Lots of us out here without the "official" diagnosis.

Yeah, they want to see you 3/4's dead and strung out on every medication before they'd acknowledge that something could be causing this.

You're seriously trending celiac/gluten intolerant with those symptoms, genetics and blood tests already.

If you feel better off of gluten, don't eat it. Your household, perfectly reasonable to insist on the rest of them cooperating to keep you from getting cross contaminated.

p.s. edited to add that I have the neurological complications, and even a brain scan showing lesions, combined with my dramatic response to a strict diet, still didn't impress upon a neurologist that it was a gluten problem.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Yes, my DGP was really positive!! I also have an elevated CRP (inflamation indicator, non-specific). In 2007 after a bowel resection, I developed an obstruction due to excessive scarring and inflamation, lost 20 lbs and was pooping 20 X's a day!! They did a Celiac screen on me at that time, and it was supposedly normal. But I recently got copies of that "normal" screen, and my Anti Gliadin ABS were on the very high end of normal (my IgG was 9, with anything higher than 9 being positive). Ever since then I have been suffering with all kinds of crap (see my siggy). So, yeah, I think it's Celiac, but for whatever reason it's not attacking my small intestines enough to pick up on biopsy. It sure is attacking the rest of me, though! :(

Now if I can just convince my PCP, hubby, family, and child's peditrician that I have it.... :(

Your damage may be patchy and a damaged area was missed. With your positive blood work, positive for the genes and recovery on the diet that may be enough to convince the doubters.

Reba32 Rookie
Reba32
Posted

had you been gluten-free for a while before you went for the biopsy?

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