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Jherm21

6 month mark gluten free

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So it has been 6 months since my gi diagnosed me with celiac disease. And it has been a learning experience and quite a lifestyle change. I still have symptoms, panic attacks, foggy (not half as foggy as I was before diagnosis) some lose stools not bulky like they were.  I also noticed when I was eating gluten when I would use the bathroom the stool on the toilet paper was yellow. That Doesnt happen anymore. But my stool is not 100percent firm and formed like how it is suppose to be. I also still get lightheaded and dizzy alot which was always a symptom and a major one. I didn't start having joint pain until after I went gluten-free which is strange both my elbows and wrist hurt on a daily basis and I also didn't have tingly hands until after going gluten-free which worries me. My thyroid before dx  was slightly off but the endo said not off enough to stay on thyroid hormone so about 4 months on diet we checked and it seems to have normalized for the most part t3 nd t4 are low but just above lab range. I get depressed alot especially when I continue to have symptoms. My hair seems to still be falling out and I still have an enlarged lymph node on my neck. Still deal with fatigue but not as bad as it was. My dx process has been strange and annoying. I first saw the gi in January and he did blood test which were negative but did an endoscopy anyway and his pathologist came up with increased intraepithelial cells and mild villous focal blunting. I went to see a celiac specialist by month 4 and her pathologist looked at my slides and just saw increased intraepithelial cells so the differentials have been a numerous amount of possibilities. But they just left me high and dry to figure it all out on my own. They weren't too concerned about giving me a definitive dx. I did the gene test which we know just excludes the possibilities of you could or could not have it so I did test positive for hla dq8 gene but that doesn't necessarily tell me I have it. So far I'm not sure if I have it. Some things have improved but some things I am not seeing much light. I will say I was so fatigue to the point I felt like I had the flu all winter now I'm able to exercise for a little amount at a time but not like I use to so it's frustrating. Will I ever be able to exercise like I use to? The specialist said the only way to confirm the dx is to do the gluten challenge she said 2 to 4 weeks on gluten but from what I've read it's longer for positive antibodies. Prior to dx I was not eating breads muffins things like that. But I was eating gluten since It is in everything. I guess I am just venting because doctors don't seem to want to listen to everything. They don't have enough time.

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Have you had your vitamin levels checked? Something's way off for you, and you should check them.post them if you have them.

post your latest thyroid numbers for us too. Sounds like that's off. I just got diagnosed with hypo so I'm a bit sensitive to the thought!

some people don't get better for a year or a bit more, on the gluten-free diet...... if that is your only issue.

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I'm sorry you are feeling so bad.  Many people take 1-2 years to feel better on a strict gluten free diet so that fact that you are better but not 100% could just be a normal recovery period.

Also, you could still be consuming little bits of gluten so you are not getting complete recovery - the learning curve for a gluten free diet as it relates to celiac is quite steep.

Finally, they could have the diagnosis wrong. Which antibodies did you have tested at the beginning? If they only did a TTG- IgA and didn't do the rest of the panel, they could have missed something.  

Of course, you have lots of options to figure it out. 1. Do a gluten challenge. Get a full blood panel after 8-12 weeks. 2. Live a strict gluten-free lifestyle for another 6-12 months and see how you do. 3. Get a second opinion (although it sounds like you did this already with a celiac specialist.)

I agree with doing the malnutrition workup (Zinc, magnesium, B12, folic acid, ferritin, Vitamin D etc ) and seeing if you haven evidence of malnutrition. If you do, it further supports the diagnosis of a malnutrition syndrome and gives you further explanation as to why you still feel bad.

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