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Not much improvement

HARRYE10

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HARRYE10 Rookie
HARRYE10
Posted

Hello. My symptoms started in April and I've had numerous blood tests and an MRI back in June and nothing has flagged up as abnormal. I also tested negative on the ttg blood test twice, ruling out coeliac disease. However I am still unconvinced, particularly as my grandmother had coeliac and so I went gluten free in late Septmeber. Whilst I have seen some improvements, I am still getting headaches but what I am more concerned about is wasting. I seem to be continuing to waste all over my body including my face. I am unsure if it is muscle, fat or both but I haven't lost any weight? Has anyone else suffered from this. I'm just hoping it will start to get better along with other symptoms. I have seen a gastroenterologist recently and he said it wouldn't be worth putting me on a gluten challenge to do an endoscopy now I am on the diet as the treatment is the same regardless and he isn't concerned as I haven't actually lost weight. Any advice would be appreciated. I'm 19 by the way.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry you are suffering so. have you read the Newbie 101 thread at the top of the Coping section? If not you should do so as you may not be doing all you need to do to keep yourself safe on the gluten-free diet.  You might also want to do a challenge and have a full celiac panel done. Your regular doctor can order the tests and we really need the full panel since some of us will only show up positive on one test out of the 5 or so in the full panel.

Jmg Mentor
Jmg
Posted
20 hours ago, HARRYE10 said:

 I seem to be continuing to waste all over my body including my face. I am unsure if it is muscle, fat or both but I haven't lost any weight?  

Harry when I went gluten free I think a lot of inflammation left my body, so it looked like I lost more weight than I actually did. Maybe thats the case for you? Especially as you mention your face. I'm kind of shocked now when I look back at photos of my face all swollen. 

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