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About megsybeth

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  1. Kareng, Thanks for that info.! I hadn't realized they were labeled gluten free. I will stock up at Costco =). I have good luck with so much luck at Trader Joe's (waffles, bread, etc.) that I was worried it might be corn in general. Cyclinglady, that was always my thinking. That if you buy the exclusively Mexican brands they wouldn't have much reason to CC. Hopefully we don't have to cut this one. We love tortillas.
  2. I do a lot of shopping at Trader Joes and have found I have celiac like pain after eating their corn products. I don't think this has happened with Mission brand chips and I don't have issues at Chipotle or Mexican restaurants that don't share fryers. So I don't think I have an allergy to corn. But I'd like to try eating corn that I know is gluten free in production. Where can I find some? Can I get gluten-free corn tortillas and chips online somewhere? I don't seem to find them in WF, my regular grocery seems only to have Mission. I don't believe Mission claims to be gluten free, though I've had good luck with them. Also, if anyone does have dietary allergies, not to ask TMI, but is there diarrhea, gas, etc.? I don't get that with gluten, just intense pain, like an alien is trying to claw out. When I have corn from unreliable sources, I get a similar upper abdomen scratching feeling. Would allergies feel like this? Thanks, Megan
  3. According to my bloodwork, I seem to be taking quite a while to heal though I've been strictly gluten free and am aware and vigilent about cross contamination (eg I don't do fries in most restaurants, don't do most restaurants actually, don't do generic oats, etc.). I think I've had celiac since I had mono at six and was 35 when diagnosed. It's now two years later and two years of the diet. The malabsorption issues such as fatigue have dramatically improved and GI isn't bad, but never really was. I've relocated and new GI wants to do a repeat endoscopy because my TTG IGA is still elevated. She wants to rule out refractory celiac and has told me and I've been reading about the risks of untreated refractory celiac. But even though I'm elevated, I'm trending decidedly down. My first labs were through primary and I was positive across the panel but the range of TTG isn't accurate or useful since from Quest (and I don't remember it =)) -second, a few months into diagnosis, was TTGI IGA of about 95 (university lab); -a year later about 45 (university lab) -and now about 23 at a new hospital lab where positive is above 15 (nurse thought it was same range as my university lab tests) My thinking is since my symptoms aren't troublesome and I just switched plans, I'd rather not use my deductible to pay for an endoscopy if it's not absolutely necessary. I would think she'll see blunting...but she hinted that she wouldn't jump to steroids, would just try to make my diet stricter. I'd rather just follow repeat labs and then, if not continuing down to negative, do an endo next Jan or later when I can pay my deductible for the year. Any advice? I think I will also just stop restaurants or eating anywhere I don't trust 100% but my gut tells me (pardon the pun) that it just takes a while when active celiac is ignored for so long.
  4. I appreciate this and I am scared but trying to get in to see my doctor and do the follow-ups. The DGP did come down. I can see how I might seem defensive about the cc aspect but probably you get that when your health is uncertain and you are in the process of testing, it isn't really helpful to be told to listen to your body. I mean I'll probably listen to my celiac specialist and her evidence. My body is telling me every ache and pain is a sign that I'm going to be sick and not be able to take care of my children. Becaus nothing is known yet. If I thought the problem was a pair of gloves at chipotle I probably wouldn't be here and wouldn't be so scared. I'm just hoping to get healthy and be able to take care of my little boys.
  5. I scored the coveted dessert spot on 5yo DS's Thanksgiving party at school. I want to make some fun gluten free Turkey topped cupcakes because it's his rare chance to eat the "real" treat. Dont' have time for experiments so I was wondering what the best, moistest yellow cake mix is. Was thinking of going with Barbara's since I use other products and like them. They're four so probably will care more about the candy and frosting on top but I'd love to avoid a sandpaper texture. Thanks! Megan
  6. megsybeth

    Ridiculous Conversations

    I live in California so there are a lot of lifestyle gluten free people, which is mostly great but I get a lot of: -"So I hear you're going gluten free?".."Actually I done GONE. I don't really have a choice" -"You know if you have nice sour dough bread it cancels out the gluten" -"It's only the GMO wheat that you have to worry about" -"I'm trying to eat gluten free but last night I was bad and had rice" -"Have you lost so much weight?" "Actually it kind of sucks because I gained, I was naturally skinny my whole life" (and then I watch the wheels turning...on a diet but gains weight,...cannot compute)
  7. ...this is actually what I'm most worried about. I know celiac is serious but if it's "just" from gluten exposure I wouldn't be worried. It's that combined with the low blood cells. My levels were low last time she did a cbc as well. I just realized I wrote elevated white blood cells (my son had elevated platelets and I got mixed up), it was low that flagged.
  8. I've never cheated, I think I'm pretty knowledgeable about what I eat. I'm not super strict about possible CC outside the home, for example at chipotle I don't usually ask them to change gloves, because I've found my son (more sensitive) and I both are symptom free. But I limit how often I eat out and only have a certain list of places, I kind of go with my gut about if they really know what they're doing (pun intended =)). My first bloodwork was done at a quest but I had a strong positive on all markers. I've since done follow-ups at UCSD which has good labs and I see a celiac specialist there. My TTG IGA results have been: Sept., 2012, strong positive but don't have numbers, went gluten free immediately because I was breast feeding dard Range 1/28/13 5/1/13 9/20/13 Endomysial Ab, IGA Titer <1:10 1:20 H <1:10 <1:10 TTG IgA Ab 0 - 19 Units 94 H 49 H 45 H I also have consistently had elevated white blood cells. Have to see GI for follow-up, she thinks it might be another AI disease. Also mentioned maybe needing to go back in for another endoscopy. I'm worried about what else might be. Any btdt? -Megan
  9. It sounds tough for all of you. I totally agree that it's normal to be sooo picky at that age, but to actually refuse food all day is a bit more intense and suggests he cares about this a lot. There are feeding therapists and group programs. It could be a combination of things, where he associates some food with pain or has motor issues from the celiac. But they can be tough habits. I'd try the suggestions above but if you have insurance that covers it or the funds, I don't think it would hurt to consider feeding therapy. My DS has OT for motor issues and has needed help just eating "hard" foods. I think without his OT honestly telling me that if he spits out meat to have him pop it back in , I would NEVER have done that, but you know it worked and he needed more than the avg. kid who just needs to be exposed.
  10. I'm about ten months post-dx and gluten free and lately I keep getting sooooo bloated. It looks and feels like I gained fifteen pounds but I barely eat. Right now I'm so bloated my back hurts. I'm going to eliminate dairy to see if it helps but I thought lactose intolerance was usually early in the recovery, not later. Levels in blood work being tested tomorrow but they've been going down. I know I should do a really restricted, mild diet and add in foods one at a time but honestly don't know if I have the time or discipline to do it right now becuse life is so crazy. Any advice for a way to get on top of this?
  11. Last year we used the Discount School Supply play dough at home and at DS's school. I don't belive we've had any reactions. But I noticed when I needed to reorder that they don't list gluten free on their website. So to be safe I tried another officially gluten free brand. I'm not happy and am sending it back (Scented "wonder Dough", sticky, sticky, stains). Do you know if Discount School Supply changed anything or is it the same dough? Thanks, Megan
  12. Something keeps giving me stomach cramps and DS diarrhea. His babysitter swears it's the M&Ms because she thinks he has diarrhea every time he gets them. I give them every day as a reward for going #2 on the toilet. But I don't notice that he gets D directly after. Mars lists them as gluten free. In general I would say we're not extraordinarily sensitive to cc but I thought I'd check if M&Ms were a trigger for others.
  13. I think you could suggest to them that they label them "wheat free". For me, this is clearer that they are going for health-conscious people. Peet's Coffee carries a wheat free muffin and when you ask them about it, same thing, shared facility, bumping all around with gluten products. But there is a market that just wants to avoid wheat, so I get that it's not for me. I think the label "gluten free", should be reserved for products made by people who know what it is and why it's important.
  14. I feel like I'm really careful but lately a couple times a week I'm getting pain and brain fog and he's getting D and grumpiness. I know I need to go back to basics but a couple things that I thought might be causing issues, though it's hard to say when we get triggered: -Think Think Bars, I have one a day and try not to let ds have them but he always nags for bites -quinoa? possible? -Sukhi's sauce mixes (Indian). I think these are the likely culprit and will eliminate but they are dedicated gluten-free and vetted by Sprouts, which checks pretty well before putting their store gluten-free label on and much of the Indian diet is naturally gluten-free, so cc seems less likely... I don't think these are other food sensitivities because for me, it's an intestinal burn and fogginess that can only come from one thing. I also get plain old disgustingly sick from oats, watching out for those more vigilantly too. Any tips on above brands appreciated. Any other bars to try? I have a very hard time finding things I can eat in the morning. Even before diagnosis, I needed to have something that I could make myself eat first thing. I make my own lara bars for the boys but want something less sugary for me.
  15. I promised my 4yo I'd finally crack open my deep fat fryer to make donuts this weekend. Any advice for someone who's never used a fryer before? Also, any good recipes?I don't like the cake style (krispy kreme), prefer old fashioned or cruellers. Would also appreciate freezing tips. Thanks! Megan