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cait

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cait Apprentice
cait
Posted

My doctor finally called back today. Biopsy and bloodwork are negative for celiac. However, I do have one of the genes for it, and my dad has celiac. I have been gluten-free since the biopsy, and while waiting for the results had an accidental glutening resulting in days of fuzzy head, headache, joint pain, fatigue, and general ick. Obviously I need to stay gluten-free. But do I act as if I have gotten a celiac diagnosis and avoid every trace since I'll never be able to tell if i have developed celiac? Or do I have some flexibility to just figure out what works for my body since I don't have the big bad diagnosis? I'm inclined to say I need to avoid every speck, but don't want to be making too big a deal out of things if I don't need to. Opinions?

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adab8ca Enthusiast
adab8ca
Posted

Run, don't walk away from it. If you have a dietary response, then you have some intolerance and best avoid it...My humble $0.02 :)...

Sweetea888 Newbie
Sweetea888
Posted

My doctor finally called back today. Biopsy and bloodwork are negative for celiac. However, I do have one of the genes for it, and my dad has celiac. I have been gluten-free since the biopsy, and while waiting for the results had an accidental glutening resulting in days of fuzzy head, headache, joint pain, fatigue, and general ick. Obviously I need to stay gluten-free. But do I act as if I have gotten a celiac diagnosis and avoid every trace since I'll never be able to tell if i have developed celiac? Or do I have some flexibility to just figure out what works for my body since I don't have the big bad diagnosis? I'm inclined to say I need to avoid every speck, but don't want to be making too big a deal out of things if I don't need to. Opinions?

It is possible that you actually do have celiac disease. Six years ago, my doctor (internal medicine) was SURE I had celiac disease. The gastro doctor she sent me to (who is reportedly one of the better ones in Memphis) told me he was convinced I didn't have it. The blood test was negative. My doctor told the gastro doc to do exhaustive biopsies everywhere. He told her and me that he would bet both of us fifty bucks I didn't have evidence of celiac disease. Once the results came back, he said that I did have it, but that the damage was only in one small part of colon near the ileocecal valve and that he could easily have missed it if he hadn't done so many biopsies. I have been gluten free ever since and my health has improved two hundred percent. Every time I get glutened accidentally, I get sick and feel terrible....and end up having the old non-colon-related symptoms come back..aches, pains, tiredness, fuzziness, etc.

cait Apprentice
cait
Posted
  • Author

So then I should probably get rid of everything, right? I discovered when I started looking at cutting gluten out of my diet that my antidepressant is not gluten-free. I don't really want to change it because it works well and doesn't have a lot of side effects. But if I need to get rid of it, then that's what I need to do. Ugh. The food part has been OK, and worth it because I feel so much better. But changing meds sucks. Would be nice if being gluten-free made me better enough to just be off the stuff, but I'm not sure I'm quite there. And I'm afraid of messing up this odd new phenomenon of not feeling awful all the time.

ravenwoodglass Mentor
ravenwoodglass
Posted

So then I should probably get rid of everything, right? I discovered when I started looking at cutting gluten out of my diet that my antidepressant is not gluten-free. I don't really want to change it because it works well and doesn't have a lot of side effects. But if I need to get rid of it, then that's what I need to do. Ugh. The food part has been OK, and worth it because I feel so much better. But changing meds sucks. Would be nice if being gluten-free made me better enough to just be off the stuff, but I'm not sure I'm quite there. And I'm afraid of messing up this odd new phenomenon of not feeling awful all the time.

Yes you should get rid of it in everything including your antidepressant. You may find after you have been gluten-free for a bit that you don't need the antidepressant anyway as depression and anxiety can be part of the celiac or intolerance symptoms. Do not suddenly stop taking the med though as some psychotropic drugs can have serious withdrawl problems if stopped suddenly. You may be able to get the same med but made by a different company so check with your pharmacist. I take an antianxiety med to deal with PTSD and found that although the name brand is not gluten free the generic is.

cait Apprentice
cait
Posted
  • Author

Yeah, I'm hoping I won't need it anymore, but am not sure if I'm ready for that yet. Probably need a little longer gluten-free. But there is definitely hope. My emotional state was very different when I had my accidental gluten this week. I don't know if I fully realized how much that had already changed until it was gone.

I'm quite familiar with the WD symptoms of the meds. I get pretty loopy if I miss a single day. There's no way I'd just drop it. Unfortunately, it's a newer drug, so I don't know that a generic is available. It's related to effexor though, so I can just go back to that, if nothing else. I just get more side effects that way.

I'm still fighting the part of my brain that says I must be making all of this up, so i'm caught between wanting to take it seriously and feeling like I must be making too big a deal out of it.

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