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Score Of 63

formerglutenglutton

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formerglutenglutton Newbie
formerglutenglutton
Posted

Hey all. New kid on the block here. You're my last hope!

I have been suffering for many years with gi distress, but in 2005 when my 38 year old sister died of breast cancer, my gi problems hit an all time high (chronic stomach pain, constipation, explosive belching, 24/7 heartburn, bloating/stomach distension). I have had colonoscopy, upper endoscopy, celiac blood work, cat scan, ultrasound. My endoscopy showed duodenitis and gastritis, but all other tests were normal. Until now.

My new doc had me do a stool test for gluten antibodies with Enterolab. The score was 63. Is this high?

Does anyone know what this means. Can I have celiac when all other tests are normal?

I'm very confused. I'm 5'6", 115 lbs. If I give up bread (and other gluten foods) I'll dry up and fly away.

PLEASE HELP!

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TracyB Apprentice
TracyB
Posted
Hey all. New kid on the block here. You're my last hope!

I have been suffering for many years with gi distress, but in 2005 when my 38 year old sister died of breast cancer, my gi problems hit an all time high (chronic stomach pain, constipation, explosive belching, 24/7 heartburn, bloating/stomach distension). I have had colonoscopy, upper endoscopy, celiac blood work, cat scan, ultrasound. My endoscopy showed duodenitis and gastritis, but all other tests were normal. Until now.

My new doc had me do a stool test for gluten antibodies with Enterolab. The score was 63. Is this high?

Does anyone know what this means. Can I have celiac when all other tests are normal?

I'm very confused. I'm 5'6", 115 lbs. If I give up bread (and other gluten foods) I'll dry up and fly away.

PLEASE HELP!

Sorry I can't help with your Enterolab results (although I think it was good that the doctor is open and did suggest them). However, I just wanted to comment on the gluten free diet. If you are celiac or gluten intolerant the likelihood is that you will gain weight once you are rid of something that is irritating to your system. Also, I just yesterday read some medical documentation somewhere where they did a study and found that those that were overweight or obese even and were found to be celiac, actually gained even more weight on a gluten-free diet. So it can swing both ways.

Have you opted for the biopsy yet?

TracyB

formerglutenglutton Newbie
formerglutenglutton
Posted
  • Author
Sorry I can't help with your Enterolab results (although I think it was good that the doctor is open and did suggest them). However, I just wanted to comment on the gluten free diet. If you are celiac or gluten intolerant the likelihood is that you will gain weight once you are rid of something that is irritating to your system. Also, I just yesterday read some medical documentation somewhere where they did a study and found that those that were overweight or obese even and were found to be celiac, actually gained even more weight on a gluten-free diet. So it can swing both ways.

Have you opted for the biopsy yet?

TracyB

Thanks for your fast response TracyB. Biopsy is under consideration. I am so overwhelmed right now it's difficult to know what to do. I just want to be well. It seems like all of the traditional western medicine tests have given me nothing to work with. I'm thinking because the blood work was negative, the biopsy would also be negative. Do you know if one can be negative and the other positive?

ShayFL Enthusiast
ShayFL
Posted

We would need to see the reference range for the Enterolab result.

Trauma and grief can certainly trigger all sorts of GI issues including Celiac and/or gluten sensitivity.

The proof is in the diet. So you can adopt a gluten-free diet and see if your symptoms go away.

I hope you feel better soon.

***YES. One can be POS and the other NEG.

formerglutenglutton Newbie
formerglutenglutton
Posted
  • Author

A negative response for Enterolab is <10.

frec Contributor
frec
Posted

Some researchers are starting to think there are stages of celiac. You could be an early stage with antibodies but minimal intestinal damage. The positive antibodies sounds pretty definite, especially given your digestive problems.

You might have trouble finding enough starchy foods at first but you'll catch on fast. There are lots of breads, cookies, crackers, pasta... Keep reading this forum for brand names, recipes, etc. And you can still eat healthy fats--avocados, nuts, nut butters, etc. If you have celiac you'll absorb nutrients better once you are on the diet. You're not going to gain weight with chronic stomach pain and heartburn. Good luck.

ravenwoodglass Mentor
ravenwoodglass
Posted

It definately sounds like you are one of us and the stool testing result bears that out. As others have said you may find that it is a lot easier to maintain your weight once you are gluten-free. If you plan on having a biopsy then please don't stop eating gluten until that is done or your chances of having a false negative will be very high. There are folks who have had a positive biopsy but negative blood work, we have a few on the board here. You can also be celiac even with a neg biopsy, you have 22 ft of small intestine and damage is often patchy and if the correct area is not biopsied or the slides are not read by someone familiar with the different stages of celiac damage they will be a false negative. After you are done with testing then you can and should begin the diet no matter what the results of biopsy and blood. The high rate of false negatives on blood almost killed me. They tested me repeatedly at one of the best hospitials in my state but never told me about the diet or even celiac just to be happy it was negative. If just one of those doctors had said to try the diet anyway when they first started to look for celiac my life now would be very different. Doctors often consider the diet a fate worse than death, so to speak, but in my personal experience the aftereffects of being misdiagnosed and the permanent damage done is far worse than the dietary restrictions. The diet is very doable although it does take some getting used to.

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formerglutenglutton Newbie
formerglutenglutton
Posted
  • Author

Thank you SO MUCH for your responses. I'm very touched and really want to cry.

The more I learn about celiac the more I wonder if this has not been my problem for a very long time. I have been diagnosed with fibromyalgia and osteopenia at age 48. I am also wondering if celiac disease doesn't help explain my two daughters--one was born with a several anomalies including heart defect (she lived four months); my other daughter was born anancephalic (a condition where the skull never develops). Could celiac disease be the reason? I suppose it's useless to ask except to improve my health here and now.

I have implemented the gluten-free diet since last Friday and already feel a little better. Ravenwoodglass, you are right. I'm having trouble finding enough carbs. I thought I could eat oatmeal, but think I'm having trouble with that as well. Hopefully, as you say, I will catch on soon enough.

As for the biopsy, I can hardly stand the thought of a gluten binge in order to increase the chances of a positive test. So I'm still thinking about that. Any thoughts you can offer are much appreciated.

Thank you again everyone.

ShayFL Enthusiast
ShayFL
Posted

Make sure that oatmeal is gluten-free....Bob's Red Mill....it must say certified gluten-free. Most oatmeals have gluten.

Gemini Experienced
Gemini
Posted
Hey all. New kid on the block here. You're my last hope!

I have been suffering for many years with gi distress, but in 2005 when my 38 year old sister died of breast cancer, my gi problems hit an all time high (chronic stomach pain, constipation, explosive belching, 24/7 heartburn, bloating/stomach distension). I have had colonoscopy, upper endoscopy, celiac blood work, cat scan, ultrasound. My endoscopy showed duodenitis and gastritis, but all other tests were normal. Until now.

My new doc had me do a stool test for gluten antibodies with Enterolab. The score was 63. Is this high?

Does anyone know what this means. Can I have celiac when all other tests are normal?

I'm very confused. I'm 5'6", 115 lbs. If I give up bread (and other gluten foods) I'll dry up and fly away.

PLEASE HELP!

If you are Celiac and go on the gluten-free diet, you will start to absorb nutrients again and will gain weight. I never, ever got above 105 lbs and I am 5' 4". That was eating about 3-4,000 calories per day too. Once I went gluten-free, within a year and a half I was at my present weight of 112 pounds. I now have to watch my intake, like everyone else, but it is SOOOOOO worth it. I have never felt better in my life and have zero stomach issues now. You don't have to pig out on gluten-free bread, either, to gain weight....all you have to do is be able to absorb calories! Try the diet if Western medicine does not help you.

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