Posted 06 May 2012 - 06:54 PM
I have been gluten free for nearly 3 years now and I'm pretty sure I'm only getting sicker. I have changed to a Paleo diet, which helps, but my stomach still isn't working like normal. I have tried eliminating every food group and don't think I'm allergic to anything else so I don't think that is the cause.
Last Wednesday I went to the doctor because my leg felt like it had fallen asleep for 3 days, it's still that way and my foot, hand, and forearm are affected too. I was incredibly worried that it was MS, but the doctor tested me for B12 deficiency, Vitamin D deficiency, and did a thyroid panel. I got an email from her today that my B12 and Vitamin D are low. The vitamin D may be from only eating cheese and no other dairy products, but it still doesn't seem right. I'm probably going to get a full nutritional panel because I suspect I'm not absorbing any nutrients from my food. This is strange to me, because after I was diagnosed Celiac my gastroenterologist did a full nutritional panel and I was only lacking in iron. Like I said, I'm paleo now and I rarely eat processed food at all. It's all fresh meat and produce, so I know I'm not eating gluten from anywhere. So why am I getting sicker? I'm only 20 and when I was diagnosed my villi were only slightly blunted, so the doctor said I should return to normal soon. I'm beginning to wonder if I was actually misdiagnosed. Anyone have any ideas?
Posted 06 May 2012 - 06:59 PM
Posted 06 May 2012 - 07:11 PM
Posted 06 May 2012 - 08:45 PM
Posted 06 May 2012 - 08:58 PM
No, I doubt that you were misdiagnosed; it is just that, despite what the clothing catalogs say, one size does not fit all. Our recoveries are extremely variable and cannot be pigeon-holed.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
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Posted 07 May 2012 - 06:40 AM
Ask for SIBO testing. A bacterial overgrowth can give Celiac-like symptoms. The bacteria emit toxins as they eat what's in your system. I see you were given anti-biotics in the past. Being treated once may not be enough?
Thanks for the reply, I did cut out cheese for about 6 months but noticed no difference, so decided to add it back in. I am getting an allergy panel done soon though so hopefully that will tell me if I actually am. I completely forgot about refractory sprue, I think it's time to go back to the gastroenterologist and get my blood levels rechecked and another endoscopy. I saw my gastroenterologist last year and he put me on a course of antibiotics for possible bacterial overgrowth in my intestines and did a barium X-ray, but he found nothing and dismissed it as IBS. I was so mad after that that I just decided to take matters into my own hands and change my diet until I was able to find something that worked well enough for me to go off daily miralax. I'm only 21 so I thought I would heal fast, which makes the fact that I'm getting worse even harder for me.
If you need miralax, that's more evidence that there may be a SIBO problem. Are you taking antacids/PPIs? That contributes as well.
Many of us need digestive enzymes. They help digest our foods and help to keep bacteria at bay.
Posted 07 May 2012 - 06:58 AM
I did have my nutritional levels checked right after diagnosis, along with an osteoperosis panel, and I was fine except for anemia which I corrected with iron supplements. When I got diagnosed, my doctor said I was a "weak positive," so I don't know why I feel worse now. I'm going back to the doctor today and I'm going to get a full nutritional panel done, I'm also going to meet with an allergist to get tested for that, and hopefully I can meet with my gastroenterologist and get another endoscopy done. Thanks everyone for your help!
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