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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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    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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