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Really Frustrated

amberlink09

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amberlink09 Apprentice
amberlink09
Posted

Hey guys,

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?

Thanks!

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MitziG Enthusiast
MitziG
Posted

You mentioned you eat cheese- a lot of celiacs are dairy sensitive, and you may not be having a noticeable "reaction" but it could be causing the malapsorption. Recently discovered this is my situation. Also, you could have refractory sprue- but that isn't super likely. Has your dr checked your antibodies? That is a good thing to make sure you aren't getting hidden gluten from somewhere. Even tho you are paleo, there is the possibility of contamination from beauty products or pet food, etc. Your dr should maybe do a biopsy to see if you still have villous damage as well. Those would be my suggestions.

amberlink09 Apprentice
amberlink09
Posted
  • Author

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.

MitziG Enthusiast
MitziG
Posted

Definitelt see your GI for a follow up to make sure it isn't still gluten messing you up! I have heard a lot on this forum about digestive enzymes- recently started researching them as well. Might be something to look into. Even if you aren't assaulting your gut with foods it doesn't like, your digestive flora can be so messed up from when you WERE eating gluten that things just aren't working right still. I feel so much better than I did, but am still not absorbing properly and have discovered dairy gives me cystic acne, so recently went 100% casein free. NOW I am having intestinal issues again! So, ordered some enzymes and shall see what happens!

mushroom Proficient
mushroom
Posted

Were your nutrient levels tested right after your diagnosis. Because celiac is a disease of malabsorption, \ most of us are deficient in essential nutrients at time of diagnosis and this can delay healing if not addressed. B12 and D are two very common deficiencies. I think a full nutritional panel is a very good idea if it has not been done before - ferritin, folate are two common ones along with thyroid. I have been gluten free for four years and still supplement with B12, D, and most everything else. I cannot seem to absorb any potassium or magnesium and supplement these twice a day for proper heart function. There are times when I feel like I need the digestive enzymes and will take them for two or three months until the need seems to abate, but I know my pancreas does not work as well as before. Some of us heal up as good as new, some of us don't -- that's just the way it is :rolleyes:

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.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

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.

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?

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.

amberlink09 Apprentice
amberlink09
Posted
  • Author

I've tried digestive enzymes and probiotics, a few different brands, but nothing worked. I was working with my local pharmacy to try different enzymes and things to restore my gut, but still no improvement. I haven't been tested for SIBO, I was treated for it and thought it was the solution to my problems but I didn't see any results.

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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