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Next Step After Positive Enterolab Test

cbu2424

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cbu2424 Newbie
cbu2424
Posted

Hi everyone.I went gluten free back in May after noticing on the days that I ate very few carbs I felt better.I was being plagued for years with sinus headaches and was dx a few years ago after birth of my third child with GERD. At time of GERD diagnosis i was in bad shape .I couldnt even drink water without feeling acid immediately after having her. I was getting very bad anxiety attacks and extreme fatigue. A few months after she was born many of the extreme symptoms went down to a more lower end level, the last symptom before they became tolerable was a swelling of all my fingers that would start every night and continue into the morning. I had to have my wedding ring resized and could not even bend my fingers to hold shampoo in the shower. Mysteriously at month 4 that went away and i was left feeling not great but not exteme case of sickness. So life went on ,busy with three kids. Back in the spring I decided as part of my eating habits to cut some carbs and eat more protein. So I began skpping bread at lunch and replacing it was lettuce,etc. All sudden I had more energy and better mood.  Initially i thought it was the carbs but then started reading that the type of carbs I was eating may have been more important. So I cut all the gluten as a test. Within one week I started feeling a lot better and after a couple weeks noticed huge difference. Before I cut the gluten I was getting very very tired after meals, I could not stop yawning and by mid afternoon almost felt like I would actually fall asleep at any moment, almost a drugged type feeling, not just tired but felt like I would talk kind of slurry, and felt sick. So I was drinking a lot of coffee to try and help. In reading about gluten some other symptoms I have had which may tie in are the gerd, as well as dental enamel issues, I had fillings done and they come off, dentist commented if I am chewing on battery acid or something,.,I also get bloated stomach but not since cutting gluten. I am in a 100 percent better mood, I dont think I realized how down I was feeling til the gluten was removed. 
Anyway bc I dropped the gluten allergist said  bloodtest wouldn't work so I did the entero lab testing. 

Results showed positive for two genes, one gene they said "is associated with celiacs" , other gene associated with "gluten sensitive" . Because I have both,report said I am in high risk catagory for more extreme gluten reacction?

Stool sample was positive at a number of 25 (over 10 is positive) ,this is despite me pulling gluten from my diet for three months. I have three kids. Two are very tiny, 5th percentile for weight, 20th percentile for height. I am wondering if I have celiacs (I am small too, 100lbs, 5'3" and that they do (my son is 90percentile and huge , as is my husband), or if the girls are small just bc I am petite.

What would my next step be? Thanks.Cheryl

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kareng Grand Master
kareng
Posted

If you think you need to test your kids for Celiac, don't take them off of gluten until a medical doctor has blood tested and maybe endoscoped them. Enterolabs " stool tests" are not medically accepted. You might have a hard time getting doctor's notes for school, camps, etc for the kids with those tests.

As an adult, if you feel better off gluten, you can eat gluten free in most circumstances without an actual diagnosis.

nvsmom Community Regular
nvsmom
Posted

i agree with Karen, I would try to get blood tests for the kids before going gluten-free. try to have both the tTG tests and the DGP tests done (DGP tests are better for detecting celiac disease in kids).

 

welcome to the board.

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