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Everything posted by JenC

  1. We are planning a cruise in September and cannot decide between Royal Caribbean (for its onboard activities) and Carnival (cheaper therefore would book balcony rooms). I'm wondering which is easier for gluten-free travel? Both DD and myself are gluten-free, and I especially want her to have fun!
  2. JenC

    Royal Caribbean Or Carnival?

    Thanks! We ended up in a boardwalk balcony room on Royal Caribbean.
  3. So, we took my daughter (age 3) off gluten in December and saw a positive response. Of course, since all of her tests showed no problem with gluten we were kind of wondering if that's really what it was that had helped her. Fast forward to a couple weeks ago: she did a head dive into the coffee table, sustained deep cut on her face and ended up with 8 stitches right near her mouth. The only food she was willing to eat after was Kraft mac n cheese, so it kind of turned into a gluten trial of sorts. Within a couple days it seemed her stool was different, but nothing more than that until about two weeks in. We were questioning her intolerance at all. Gradually things like dark rings around her eyes, crappy appetite, and even crazier stool started happening, so we realized we needed to get her back off gluten. Then her tummy was hurting a lot, and we took her right off. Within two days of that she was complaining every time she ate that she felt like she was going to puke, or that her tummy hurt. Is it possible that her stomach is so irritated from the gluten that now not only does she have a low grade tummy ache constantly, but eating makes her feel nauseous? She was only back on gluten for two weeks. Guess my husband (the one slow to come around to this gluten thing) is convinced now. I just want to make sure we aren't attributing these things to gluten erroneously.
  4. She is definitely casein sensitive, so she is off gluten, dairy and soy, and has been for six days. She is still complaining of tummy aches and occasionally of feeling like she needs to vomit after she eats. My guess is that we did a number on her stomach.
  5. My husband took our daughter to the park. Afterward he stopped to get her a treat. Rather than get her something from the several options I listed, he got her a McDonald's strawberry sundae with nuts. Though their site says they're gluten-free, what are the chances of cross-contamination in this case?
  6. Well, no apparent CC this time.
  7. So, went to GI today with DD's list of concerns. crappy sleep (wakes every 20 min-2 hrs all night long) stomach pain extremely irregular stool in frequency, consistency, color, smell, sometimes floats a bit lots of undigested food in stool gassy tooth decay to the extent she had four removed drop in percentiles (from high 90's to BMI being so low it's touching danger zone) soy and dairy intolerant says hungry won't eat bags under eyes frequent congestion pain when having BM - shivers, cries, totally freaks His response: an ultrasound to rule out colon blockage. Give her Benefiber to make her regular. That's it! He said that she may have IBS like me. That anyone who removes gluten from their diet will have pain when they start eating it again, even someone without celiac or NCGI. All the other symptoms mean nothing to him, just the alternating between C and D. Her total IGA was 18 (range 20-100). He says it's too high for her to be IGA deficient, therefore her Celiac results are valid (all negative). I am so, so frustrated. Please help. Does anyone have experience or can point me in direction of research contradicting this doctor? He also said if I am negative for both genes, then he thinks I couldn't possibly have Celiac, and it's pointless to do any more testing with her. What the heck.
  8. I can see wanting to rule out everything else before jumping to gluten. I went to him hoping he'd want to cover all the bases. It seems like he isn't concerned enough to think there is even a problem. Great point about bringing respected studies with us next time to reference! I'm concerned that aside from the misinformation he spouted off, he discounted the huge drop in percentiles on the growth charts, the undigested food and sometimes floaty stool, and the fact that I AM gluten intolerant with Hashimoto's. He just completely ignored those things. He didn't even take the stool sample we brought in.
  9. Why didn't I think to ask for citations and studies? Oh well, I'm not going back to him. I knew within a few minutes he was useless. He kept hearing my comments/questions, then turning away from me and speaking only to my husband. Nice.
  10. Ah, but you are forgetting that this "doctor" doesn't believe we should remove gluten from her diet. Excellent point, though.
  11. Yeah, that makes sense to me. Why would someone who tolerates gluten fine feel ill after going back on it? Seems like someone who has no issues could eat it or not, with no change in body.
  12. Here are some of the gems I heard from my daughter's GI today. True or False? Links to current research (for my husband) are much appreciated! ANYONE who removes gluten from their diet and then later reintroduces it will feel ill and react to it. This does not mean they are Celiac or NCGI. If someone tests negative for the two main Celiac genes, no further testing is needed. Celiac has been ruled out. IBS is its own valid thing, and not often a misdiagnosis of NCGI. A Total IGA of 18 (range 20-100) is not enough to be IGA deficient. Irregularity is most likely cause of foul smelling stools, alternating between regular/C/D, strange colors, undigested food, and lots of gas and stomach cramps. What do you guys think? Does this doc know his stuff, or should I fire him?
  13. I would have sworn I have Celiac Disease based on my symptoms, but my genetic testing and antibodies come back negative. To be honest, I was hoping that I did have it, because it would be easier for me to stay gluten-free if I had a disease. (I know, I'm really messed up.) I do have Hashimoto's, I am now insulin resistant and my adrenal system is really fatigued. My MD and ND both recommended I avoid gluten, but I'm having a hard time sticking with it. The few times I've stayed off for a week or so, I started to see improvements that make me definitely believe they're right about me being at least gluten intolerant. I guess my question is, I know the technical difference between celiac disease and GI (the villi), but are all of the other symptoms and ramifications of consuming gluten the same? If I continue to eat gluten am I putting myself at risk for the same health problems someone with Celiac faces if they don't quit? Thank you!
  14. Thanks for this. I've decided I need to just suck it up and be gluten-free, as regardless of whether it is celiac, I have to be diligent. I would be elated if my emotional eating issues eased as a result of being gluten-free!
  15. Thanks. I have serious anxiety issues, but if I can convince a doctor to order one I'll just force myself to do it. I really want to know.
  16. Thanks. I guess I just thought since I don't have either of the two genes most commonly associated, I was unlikely to have it. Maybe I need the biopsy. I'm terrified of it.
  17. I think I was really hoping that the long term consequences are the same for the two, because it'd be easier for me (an emotional eater) to stick with gluten-free if the consequences for not doing so were so obviously dire. Lol.
  18. No endoscopy. I'm a wuss. My MD didn't think I had Celiac, but he does think gluten is poison and I should avoid it. Genes... I can't find where I put my paperwork, but it was the two on the typical celiac gene panel.
  19. I recently had the genetic celiac test and the blood panel done, both of which came back negative. I'm fairly certain I'm at least gluten intolerant, though, and because of that and my autoimmune disease (Hashimoto's) I'm going to do a 3 month trial. My question is, I have so many of the symptoms I have seen associated with celiac. Brain fog, depression, anxiety, adhd-type symptoms, digestive issues, restless legs plague me. I'd almost hoped it was celiac, because then I had hope that going off gluten may alleviate these things for me. So are these things also associated with gluten intolerance? Is there hope here?
  20. Thanks for the replies, everyone. My daughter and I start our gluten-free trial Friday. I'm hopeful that my health will improve, as well as hers. Considering my Hashimoto's and the fact that I need to be gluten-free for that alone, it would be fantastic if some of my other issues are remedied, too, just for extra motivation.
  21. Daughter's new ped said he'd ordered full celiac panel including the genetic testing. Not so much. Here are the results. Can anyone help? Tissue Transglutaminase Antibody, IGA Less than 3 Less than 5 = Negative 5-8 = Equivocal Greater than 8 = Positive Immunoglobulin A 17 (out of range) 24-121 is the range Gliadin Antibody, IGA Less than 3 Less than 11 = Negative 11-17 = Equivocal Greater than 17 = Positive Her Hemoglobin is 14.1 (range 11.3-14.1), her Hematocrit is 43.5 (31-41 range), MCV is 90.1 (70-86 range). Do these numbers mean anything? I'm so frustrated. I don't want to remove gluten if we don't have to, but I sure don't want to leave it in if we shouldn't.
  22. Is the IgG testing accurate for kids under 5? The more I look the more I think our chances weren't that great of getting a diagnosis in the first place. I think I've got my husband on board to do 3 month trial.
  23. That's what I thought about the IGA deficiency. So there is no other labwork or even stool testing that would tell us anything? We aren't interested in doing a biopsy at this point, as she already went under general anesthesia earlier this year for dental work (due to the gluten problems, we suspect). Yes, she shows many signs of celiac, but my husband is hesitant to do a 3 month trial without some lab results showing we should. Maybe the genetic testing is in order. Thanks for your replies.
  24. I just realized that DD hasn't grown in the past four months at least, maybe longer. She was born in over the 80th % for height and weight, but is below 15% now. She is allergic to soy and dairy. She has had terrible dental decay, resulting in having to have the top four front teeth pulled. She has always slept terribly. Worse when she consumes dairy or soy, but in general, awful. As in, will not sleep without me there, wakes up every 20 minutes to 2 hours (ONE time slept 8 hours straight, ever). Her stool frequently has undigested food, is extremely foul smelling and irregular in frequency and consistency. She always has bags under her eyes and is frequently congested. Does this sound like celiac or gluten intolerance? I have Hashimoto's disease and am going in to be tested for food allergies and celiac next week. We have an appointment with a new ped next week. Should I be pushing for testing for her as well? Thank you so much for any responses you could provide. I'm so worried.