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Misdiagnosed?

samiam2

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samiam2 Newbie
samiam2
Posted

I'm sure this is just denial talking, but I was wondering from those that have experience with this disease think about my diagnosis.

I had an EGD done and the biopsy came back "borderline" and then a blood test was done.

the dr. said my anti-body levels were 39 and needed to be below 19

I have NO symptoms though. I eat everything under the sun and feel fine.. i do have some reflux/gerd though, but it's not really bothering me.

that is pretty much my only symptom.

so my question is, with the biopsy "borderline"

is the blood test enough to say for 100% that i have celiac?

thanks

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NateJ Contributor
NateJ
Posted

well to me 'borderline' sounds like you are going to get worse if you don't stop eatting glutten.

I would ask your Dr. My father-in-law was told he was borderline diabetic and if he didn't stop eating so much

fatty and sugary stuff he would have to take insulin. so in my mind borderline celiac or gluten intolerance would mean they can see you villi decaying and you need to stop before it gets worse.

samiam2 Newbie
samiam2
Posted
  • Author

well to me 'borderline' sounds like you are going to get worse if you don't stop eatting glutten.

I would ask your Dr. My father-in-law was told he was borderline diabetic and if he didn't stop eating so much

fatty and sugary stuff he would have to take insulin. so in my mind borderline celiac or gluten intolerance would mean they can see you villi decaying and you need to stop before it gets worse.

When I talked to the dr's assistant, she said the pathology was such that they couldn't rule it in or out.

I don't know much about the blood work aspect of it though. I didn't know if the blood work is a definitive confirmation, regardless of biopsy results.

ravenwoodglass Mentor
ravenwoodglass
Posted

You had a positive blood test and your endo showed damage that thankfully has not progressed too far yet. Yes you are celiac and yes you do need to follow the diet. You are having symptoms, the GERD and reflux and the damage will only get worse from here if you ignore the diagnosis. Ask any questions you need to and read as much as you can here. I know it doesn't seem that way now but being diagnosed early is a good thing. Just read a few of the signatures of some of us who had to struggle for years to be diagnosed and know that you will never have one like ours. It will be a bit of an adjustment but we are here for you whenever you need us.

IrishHeart Veteran
IrishHeart
Posted

A positive blood test means you have celiac, hon.

Damage to your intestines gets worse with time and eating more gluten. So, you have been given the opportunity to stop that and avoid further autoimmune disease.

As raven has said above, many of us are people who did not know we had it and suffered for years and developed so many health issues as a result.

You don't want this. You need to be gluten free and stay healthy!

This is a great place to learn and to ask questions and lean on people who can help. It's been a lifeline for me.

Good luck!

samiam2 Newbie
samiam2
Posted
  • Author

Thanks for the responses.

we just had our 2nd child and my daughter who is 2, has milk and egg allergies.

between the 2 kids and the food allergies, I'm not quite ready to have yet another major life change, but i guess it could be worse.

IrishHeart Veteran
IrishHeart
Posted

Thanks for the responses.

we just had our 2nd child and my daughter who is 2, has milk and egg allergies.

between the 2 kids and the food allergies, I'm not quite ready to have yet another major life change, but i guess it could be worse.

Well, sam... celiac is an inherited disease and given your daughter's food allergies, you may want to have your whole family be gluten free. You may want to start doing some reading. There are many young mothers like you on the forum that can help. best wishes...

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NateJ Contributor
NateJ
Posted

it is very daunting to think about such a change. I'm going through it right now. only 2.5 weeks off gluten. But its about taking care of yourself and not getting worse. Look to your family and friends for support.

samiam2 Newbie
samiam2
Posted
  • Author

sorry for the gender confusion, I am the dad :)

I had milk allergy growing up and relatives with the egg allergy, but we all grew out of it. so while it's been a tough 2 years, we feel there was light at the end of the tunnel. she is starting to tolerate milk and items with small amounts of baked egg as the ingredients..

here reactions were severe at first, but now at 2 yrs old, she's doing much better..

My gastro dr. did suggest we get the kids tested, I really hope they don't have it.

IrishHeart Veteran
IrishHeart
Posted

sorry for the gender confusion, I am the dad :)

I had milk allergy growing up and relatives with the egg allergy, but we all grew out of it. so while it's been a tough 2 years, we feel there was light at the end of the tunnel. she is starting to tolerate milk and items with small amounts of baked egg as the ingredients..

here reactions were severe at first, but now at 2 yrs old, she's doing much better..

My gastro dr. did suggest we get the kids tested, I really hope they don't have it.

whoops, my bad, Dad! :D I should not have assumed.

WOW a SMART GI doc!! (most of us did not have those!!) it won't hurt to have them tested and it is better to know NOW and spare them stunted growth and other diseases....this thing is not to be messed with or taken lightly. YOU DO NOT OUTGROW CELIAC.

I have to wonder about your milk "allergies"....many celiacs cannot tolerate dairy until the villi are healed.

You're a great Dad learning about this disease and taking care of yourself and your wee ones. :) The sooner you start, the better.

Best luck.

ravenwoodglass Mentor
ravenwoodglass
Posted

whoops, my bad, Dad! :D I should not have assumed.

WOW a SMART GI doc!! (most of us did not have those!!) it won't hurt to have them tested and it is better to know NOW and spare them stunted growth and other diseases....this thing is not to be messed with or taken lightly. YOU DO NOT OUTGROW CELIAC.

I have to wonder about your milk "allergies"....many celiacs cannot tolerate dairy until the villi are healed.

You're a great Dad learning about this disease and taking care of yourself and your wee ones. :) The sooner you start, the better.

Best luck.

Yes do get them tested now and retest if they develop problems down the line. Celiac can be triggered at any age. If there are already growth, behavior or digestive issues then a trial of the diet should be considered even if they test negative as children have an even higher rate of false negatives than adults.

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