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Can The Lab That Runs The Bloodwork Make A Difference

cyan1117

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cyan1117 Newbie
cyan1117
Posted

A year ago my 2 y/o had blood work for Celiac that came back negative. Shortly after the Dr wanted to do a biopsy and scope to get a look at his stomach & intestines due to severe reflux, FTT, D, and an upper GI that shows thickening of the jujenum(?) folds. All normal except a few lymphocytes in lining of esophagus that we were told not to worry about.

Flash forward a year and reflux is improving, still have D many times daily, weight has gone up 5 lbs from March to Sept but he had been consuming 2200+ calories a day between food and supplements. We took him off supplements in late Sept and he seems to be holding onto the weight, just a little fluctuation right now but he has been sick. Ped GI is happy with weight gain but basically told me that I was crazy to even think that he could have Celiac with the negative blood and biopsy results.

He had surgery on Monday to correct a hernia and I had them draw blood when he was under and had the Celiac Panel that the regular pediatrician suggested be re-run (TTG, IGG, IGA). All are completely normal. I was looking back through all of his labs and realized that everytime he had labs done at duPont they send it to Quest Diagnostics. I was wondering if the lab that runs the test makes a difference?

Do I just believe the GI Dr that it can't be Celiac? I really thought that we might finally have an answer to all of his odd symptoms and issues but she really doesn't believe that it could be this. She says it's just Toddlers D, cut back on juice and it will go away. I wanted to smack her! He doesn't get more than 8 ounces of juice in a day, much less on most days. We give him a rubbermaid juice box with 3/4 water and 1/4 juice no more than twice a day on most days. If it's hot and we are outside then it would be more but I truly can't believe that 6 to 8 ounces of juice in 24 hours would cause this much D.

I have recently tested positive on bloodwork and my GI is doing biopsies in a week. I really put Celiac out of my mind for him until my results came back a month ago. I guess I am starting to think that I am pulling at straws with him now after his Drs strong negative response to my suggestion that I would like to take another look at it being Celiac.

He just has so much going on and this did make sense. Be honest, please. I am just so frustrated at this point, it's been two years of it could be this, nope; it could be that, nope; well maybe it's this, no again; it has to be this, wrong. UGHH!

Thanks

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Welcome, Cyan!

I just wanted to suggest that you give the gluten-free diet a try, maybe for a month or so and see if there's a good result. Many of us here tested negative for celiac for a variety of reasons (for example, stupid doctors who didn't know that being gluten-free already screws up the bloodwork). Also, I've read several times that the tests have a very high false negative level in toddlers and babies.

cyan1117 Newbie
cyan1117
Posted
  • Author
Welcome, Cyan!

I just wanted to suggest that you give the gluten-free diet a try, maybe for a month or so and see if there's a good result. Many of us here tested negative for celiac for a variety of reasons (for example, stupid doctors who didn't know that being gluten-free already screws up the bloodwork). Also, I've read several times that the tests have a very high false negative level in toddlers and babies.

My husband and I have been talking about this for a few days and once I get through the biopsy I think we are just going to do it no matter which way the results go. Even if it isn't Celiac the two kids and I could just be intolerant to gluten. Worst case is there isn't any improvement and I can eat all the pasta I want in a month.

Thanks

celiacgirls Apprentice
celiacgirls
Posted

I agree you should just try the diet. My younger daughter had mild symptoms her whole life but her blood tests were always negative and the doctors said it wasn't celiac. 7 years later, I did the Enterolab test which confirmed gluten was a problem for her. I knew she did better on the diet but let myself be convinced by others that she didn't have it and so we didn't always stick with the diet. Now we are strictly gluten-free and she doesn't complain about her tummy anymore. I don't know if she is truly a celiac but she does need to be gluten-free.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
. Worst case is there isn't any improvement and I can eat all the pasta I want in a month.

Thanks

You can eat all the pasta you want, anyway! Tinkyada makes gluten-free brown rice pasta that most of us think tastes exactly like regular pasta. You can also go to an Asian grocery staore and get rice stick noodles, which is pretty much the same thing made from white rice flour--doesn't taste quite as wonderful as the brown rice pasta, but good nonetheless, especially for kids, who like their pasta mushy anyway, and it's much, much cheaper than Tinkyada.

There is also corn pasta available, and quinoa pasta. They taste slightly different, but if you're slathering it with sauce, who cares?

Guest cassidy
Guest cassidy
Posted

I would definitely try the diet. Reflux was my worst symptom. I had surgery for it when I was 10 and I was about to have it again last February. All three of my GI docs and my surgeon told me I didn't have celiac because my blood test and biopsy was negative and I was complaining about reflux not D (which I had but thought was normal because I always had it). I went gluten-free and cancelled the surgery a few days before I was supposed to have it. Good thing I didn't listen to those guys.

I would give the diet a try and hopefully you will have surprisingly good results!

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