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Luvbeingamommy

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Latest Celiac Disease News & Research:

Everything posted by Luvbeingamommy

  1. Luvbeingamommy
    Wow I never thought of that....yikes we just had the last of them for lunch too. *sigh* this is tough I don't know what I can/should/be eating . How do I know if cross contamination can occur with other products. If it doesn't say made in a gluten free facility, sometimes it will say made in a facility with milk, egss, etc. What if it says nothing, then...
  2. Luvbeingamommy
    Oh man, well it was definitely a little wake up call for me, even though I tend to consider myself pretty careful. I just was feeling better after finally getting new cookware, and now this . Oh well, you live and learn.
  3. Luvbeingamommy
    We will be going to Kansas City in a couple weeks. I am not sure if Worlds of Fun and Oceans of Fun offers anything, but I plan to pack and bring our food there. I am just looking for some safe restraunts for dinner . We will be staying in Overland Park. Thanks!
  4. Luvbeingamommy
    I am SO mad at myself. We were at the grocery store and they had a ton of samples, we skipped most of them. I was at a stand that had brats and I was checking the package, it was safe. Well they served them on PRETZELS and I TOTALLY missed it, I can't believe it. How stupid asking about gluten free and then eating the pretzel and I ate my husbands and...
  5. Luvbeingamommy
    Hmm, in our diocease I can't remember then ever serving wine, maybe once or twice a year. I will just have to call our priest. I know a friend mentioned a priest in a town about 30 minutes from here who was diagnosed with Celiac. He might be a good person to talk to. We live in a small town and I am not sure our priest would know much, but you never know...
  6. Luvbeingamommy
    I have just been not going up for communion. I though maybe I'd be okay with a little once and boy did I pay for that. I am not sure what my options are though?? I did google a bit and kind of got confused. Anyone?? I know I need to talk to our pastor, but for some reason I've been nervous to??
  7. Luvbeingamommy
    Okay I am sorry to butt in, I just have a question about the genes. So if mine were this, "HLA-DQ 2,1 (Subtype 2,6)", would that be one that was hard to get a clear positive from a biopsy?? I know it's the gene linked to neruo issues and I had a stroke which my neuro thinks was from the gluten/Celiac. It's just kind of hard when you don't have a...
  8. Luvbeingamommy
    We are a shared household, I did buy our (my 2 yr old son also was dxn) own toaster and some new cooking utensils. I found a brand new baking stone at the thrift shop, never used in the box, that is ours. I have yet to buy all new pans, *just* for gluten free. I think I will do that, I didn't know if really that tiny amount might affect us, but I know...
  9. Luvbeingamommy
    Ohh I was just thinking, last night we had spagetti.....we don't have a lot of pans, so my husband used a cast iron big pot. Well I was just thinking we haven't made bread, well maybe, but I know we have made regular noodles. Would this be enough to make me sick the next day?? My husband doesn't think so.....I don't know, but I feel SO nauseous today....
  10. Luvbeingamommy
    I have been strictly gluten free since Feb. I did not get a positive biopsy, but I had inconclusive blood work, the main celiac gene as well as a gluten sensitivity gene linked to neurological problems, I had a stroke in Nov. My neuro thinks it was related to the gluten. My GI said he can't tell me I don't have Celiac and I am not going to risk staying...
  11. Luvbeingamommy
    I have been gluten-free about 3 months and feel A LOT better, but not 100%. I am still dealing with nausea, that just won't go away completely....its's very frustrating.
  12. Luvbeingamommy
    This is interesting, I've been gluten-free for 3 months and have had fatigue, but doctor thought it was depression. I am also nursing a baby and really about taking vitamins. You just had your vitamin levels checked??
  13. Luvbeingamommy
    So the second person was gluten free and still had the stroke?? I had a stroke in Nov. at 25 years old, had a WHOLE work up done. Nothing was found, but I pushed for Celiac testing and found that I most likely do indeed have Celiac and for sure a gluten intolerance. I also was found to have the gene linked with neurological side effects. My neurologist...
  14. Luvbeingamommy
    This is interesting. To pp, my GI doctor did the Celiac gene test and then I also did with Enterolab which tests for gluten sensitivity also. I am not familiar with the subtypes, I know I have the one related to neurological problems. I had a stroke in Nov. at 25 years old, nothing was found but celiac, that I pushed for testing. After the gene tests...
  15. Luvbeingamommy
    Actually 2 out of 3 in the panel were positive, but the endomysium was not. I think it was/is early celiac if anything, I had a stroke in Nov., but only started having symptoms in October. In fact, I had just nausea with no stool problem until just lately I started having diarrhea just 3 weeks ago, after the scope. My husband thought i should stay on gluten...
  16. Luvbeingamommy
    I am happy to hear you are feeling better! I am too, I just need to look at my good days and not my bad days too. Okay my best friend has a brother with Celiac and she told me I can't even drink Gatorade, because of the food startch I think not knowing if it's corn or not?? I want gatorade, and I know my electrolyes were off two weeks ago when I had...
  17. Luvbeingamommy
    I wish I could afford to do a full panel on myself and my two sons, one has pretty major bowel issues and the other has more minor constipation issues. We just afford the 900 some dollars it would cost right now. I am trying to come up with the best testing plan for myself and my 2 year old. I was trying to decide for myself who had a positive panel...
  18. Luvbeingamommy
    I may have some neurologic symptoms as well, I had a stroke don't know really why, could be gluten, maybe?? I also have dizziness, feel light headed, as well fatigue. I saw an improvement on day 3 and 4, but that last two days have been bad ....more the diarrhea and nausea department though. Hang in there I was hoping to see better signs, but I am not...
  19. Luvbeingamommy
    I sorry if I sound desperate, I am just plain tired of feeling miserable . I can only hope I start to feel better, I may have some other factors going on too, but I am hoping to feel better soon.
  20. Luvbeingamommy
    I am on day 5 or 6 of being gluten free. I have felt a little better, but still having some of the same issues. I imagine this varies from person to person?? Just wondering what the "average" was though.
  21. Luvbeingamommy
    Well, I am not sure what other testing they would do. I figured my only option would be to stay on it for another 6 months and then see if there was damage. I've decided though to go on it now, I just feel too terrible with stomach issues, TERRIBLE nausea, dizziness, tired, etc. I have 3 children 4 and under to take care of. I am going to look into getting...
  22. Luvbeingamommy
    Is dizziness a common symptom??
  23. Luvbeingamommy
    Your story sounds similiar to mine and I don't see my GI doc for another two weeks. I've also had high bilirubin, although usually around 1.2, not real high. I had some liver enzyme problems as well. My sypmtoms are stomach pain, nausea (bad sometimes), on and off diarrhea. Also had a stroke, and am a very healthy 25 year old. I just decided to give...
  24. Luvbeingamommy
    Okay that is helpful, it's hard to just have a yes or no answer sometimes?? I guess I could do the gene test and if I have the gene figure it will probably turn into it eventually. Like I had only had symptoms for 4 months and then had the scope. However, had I not had a stroke, it probably might have been longer before I pushed testing, which might...
  25. Luvbeingamommy
    I am not sure but a week ago I had full body hives, never did figure out the reason??
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