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About Bookgirl32

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  1. Bookgirl32

    Small fiber neuropathy

    I just experienced this the past two days in my face, on my cheek. It was numb, it just felt like it was sunburnt. I knew it had to be nerve related. We did just travel and I can't figure out if I was glutened (I was very careful, but did have to eat out), or if it was because I had to eat some dairy/grain in the last few days as it was my only option and prior to that I had been paleo for two months. It's slowly fading this morning. Really freaked me out though. I have a doctor appointment next week with my GP and was going to ask him to test for vitamin deficiencies. Does anyone know if low vitamin D can also cause this? I was low vitamin D a few years ago but no one figured out why.
  2. Bookgirl32

    Des Moines Iowa

    Just came from the area after driving through from Indiana. The bakery is Sweet Rewards Gluten Free Bakery. It was good! Not far off of I80 in a suburb called Waukee. We didn't need to stop anywhere else at that point but Find Me app had some options.
  3. Does anyone know of gluten free insect repellants? I know many of the natural brands don't have gluten but we are going to Colorado and I like to have the heavy duty stuff for that.
  4. Bookgirl32

    Symptoms questions about being glutened

    I can cut out the RX bars. But the eating out, we are leaving for vacation in a month, and we have days in the summer where between work and kids activities we aren't home until 9/10pm at night. Are you suggesting staying home because of the possible intolerances or because of cross contamination? I can plan and prep for those nights, but some nights it's impossible and it's either get a salmon filet and some steamed veggies from a restaurant takeout with a good reputation for celiac, or don't eat at all. I get bad migraines from not eating, which last days, so that's not an option. I've been doing sooooooo much cooking, and my son and husband are being very understanding (they've gone gluten free -- my husband has gone paleo with me-- our house is gluten free) but I can only upend their lives so much before the emotional toll on all of us is worse than the physical toll on me trying to figure out my food intolerances. I think it's trying to find whatever balance I can while still being very strict on the gluten and not giving in on grain, dairy, and sugar for sure.
  5. Bookgirl32

    Symptoms questions about being glutened

    Also, I'm taking Enzymedica GlutenEase (not to "make it safe" for me to eat gluten, I've researched it and realized it doesn't work like that, I just figured there would be a pretty good chance of there being no gluten in those). I'm on the extra strength dose bc that's all they had. I'm not taking a probiotic right now bc I've read that if you do have SIBO certain probiotics can make it worse. This is all so confusing. Doing a little more research today I'm realizing that starting the digestive enzymes extra strength could have really bothered my stomach too? I ordered Klaire Labs Pro 5 probiotics but haven't received them yet. Plus my homeopathic practitioner (who just got back from a conference in Sweden and works closely with an American rheumatologist who moved there to be able to practice both kinds of treatment) wants me to start taking something called Regulat Pro. It's a cascade fermentation product that supplies your body with enzymes in a different kind of way. But I keep reading that fermented foods are not good for IBS/SIBO/Fructose issues? The website says it's a different kind of fermentation and is not the same thing as taking those. All I know is I DO NOT want to take large amounts of antibiotics, period. Which is why the whole SIBO thing is scaring me. Also we go on vacation in a month and I need help in that regard, but I'll start another thread on that.
  6. Bookgirl32

    Symptoms questions about being glutened

    Do you just eat more meat than a normal diet? If I just eat the amount of meat I'm used to eating it would only be about 800-900 calories a day. Or does that tend to be enough?
  7. Bookgirl32

    Symptoms questions about being glutened

    I'm confused at this point. I think because I've looked up SIBO and what to eat on that diet, I've got Paleo in my head, and low Fodmap/fructose. I feel like I can eat boiled chicken LOL. What should I do first? Tackle cutting out fructose foods and see how I feel? I guess she did tell me to wait, bc she said I could still be bloating from gluten withdrawal and healing, plus eating more veggies. I'm just impatient. Not to be less bloated necessarily, just to know what's going on. I'll stick to the paleo, go heavy on the meat and eggs, keep up the green veggies, go low on the apples and watermelon? And see what happens. She did say to eat a lot of potatoes, told me it's a good way to fill up and not irritate my gut. So I've been having a serving or so of those a day. What if it's fructose intolerance and I cut out the starches and it doesn't help? Should I do these things one at a time?
  8. Have been gluten free for a month tomorrow, but also all grain, dairy, legumes and sugar free as well. I didn't have pronounced symptoms before. What I've been noticing this past month is the bloating. After eating anything. I know I'm not getting constantly glutened because we went gluten free in the house and have limited eating out to once or twice a week (all restaurants with good celiac reputations, and really basic items at that). I saw a dietician yesterday and she said it was too early to consider things like fructose intolerance or SIBO (and she also said with SIBO I would probably have more severe symptoms?). She tried to talk me into going back to some gentle non-gluten grains because her thought was my intestines are too damaged to handle all the whole foods. She said give it a few more weeks - months and see how things play out. The only other symptom I've had twice, one of which was today, was a bit of constipation followed by strong cramping for a short period of time (half hour or so) and then a loose BM, not diarrhea though. I just started taking a digestive enzyme in the past 24 hours, could that have caused that? Things I've been eating that I didn't used to: cassava flour and RX bars.
  9. That’s a good idea too. It’s hard to rethink the way you prepare food for kids.
  10. Those are great idea for summer lunches! I just have to figure out how to translate some of that into a lunch box. I did read about baking flatbreads with green banana flour, have you ever tried that? The Julian Bakery bread was not a hit at our house. I did order it straight from them, all three kinds. It had to be seriously toasted before hubby or son would eat it and that won't work well for school lunches. I think I'll try the Katz bread in case he really likes it, and otherwise save the rice flower products for if he goes to Culvers, or someplace else for a gluten free bun, and the occasional sweet treat from our gluten free bakery here in town. They don't do bread, just sweet stuff. I read that about apple juice! Thankfully I broke him of that habit a few years ago and he is mainly a water kid now unless we are at a restaurant. We also have a good homeopathic practitioner that we see that does some metal chelation on both of us, but I don't know if that addresses arsenic or not.
  11. My son has been diagnosed with celiac as well and while my husband and I have gone grain free, it's not nearly as easy to do that with an 11 year old boy. I have to use bread for him, at least at this point. I've found one Katz brand sandwich bread with no rice flower but I have to order it online. And I'm not sure he will like it. He really likes the Udi's sandwich bread. I realize I don't have to keep him from eating gluten-free products made from rice flour at all costs, but I'd like to limit it. And summer is much easier to feed him lunch. School lunches are going to be a challenge if I can't send him a sandwich. Is it unsafe for him to eat a serving of gluten-free bread made with rice flour a day?
  12. Bookgirl32

    Biopsy Results

    41. But I love it when people think I’m younger, even online lol! Thank you for the pep talk. I am really prepared to do this right, I think it just felt like it was another surprise.
  13. Second post this week, sorry. I got called with biopsy results. She didn't say the stage, just said that the villi are completely blunted every sample they took. She said it's one of the more severe ones she has seen in a while. She also had never heard of the "cracked mud" appearance (she's a nurse practitioner calling for the doctor), or she had heard of it but never seen it. She also said don't panic, go on the diet, and they'll watch for my levels to start falling. Should I be asking my GP to test other levels? Vitamin D, etc? Does this mean that the damage is so bad it won't heal? Or do I have as good a chance as any of healing? Three years ago I was gluten free for one month, and two years ago I was gluten free for two months, would that have started to heal and then gotten much worse again that fast? Or does that already mean I just don't respond to the gluten free diet? I'm scared now. Just so overwhelmed. I wasn't prepared for bad damage, etc. The doctor told my husband it probably isn't that bad all the way down into the small intestine because I would have much more severe symptoms if it was. Is that true? Or was he just trying to make us feel better? Or does he not know what he's doing? I'm afraid of so many things. Cancer, other auto-immune, refractory disease. How did you all make it through this?
  14. I also get migraines from red wine. Are white cooking wines ok with paleo? Also does cooking seem to remove the effects of the red wine? I don’t know if it’s sulfites that give me the headache or something else.
  15. That's a great idea! I also haven't completely restocked utensils and stuff, so for example tonight cooked gluten free but had to use my old pots and pans. But I got into my endoscopy on a cancellation, and it hadn't happened I'd be waiting till June 15th anyway and still eating gluten. It's amazing what it does for your motivation when you realize every inch of your small intestine that the dr looked at had visible evidence. I read that once it's visible that means it's really bad. But he also said that he didn't think it was that bad all the way throughout my small intestine or I would be having much worse symptoms. Hope he's right.