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jenny_ann

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  1. Pac, We did a stool culture. I don't know the answer to the IgE/IgG allergy question. I will review the labs myself next time we see the doctor. She did have a course of antibiotics in December. It made her poop pure water. Blech! She has been on a couple of different probiotics since then. We have eliminated wheat. We are now eliminating milk. We've never had any preservatives/dyes/etc. to worry about. Thanks for the input. If you have any more please let me know! Brainstorming from others is what I am here for...
  2. Concerned, Right now she is wheat free. Her improvements are not as drastic as last time. I sat down and reviewed her food/poop journal from a few weeks ago. Perhaps milk is the culprit. I am going to keep her off milk and see what results we get. Regardless, I am going to go see her primary care doctor and consider a GI or nutritionist for our next step. I lean more toward the latter as I am not inclined to have any invasive procedures done unless we are fairly certain there is a good reason for it. Getting the 'not celiac' news was frustrating at first. It is now a relief. If it is something along the lines of a milk intolerance at least we'll know that she isn't destroying her gut when someone sneaks something into her diet that we wouldn't normally feed her. I will continue to update here when I get answers so that others in search of answers can use it as a reference.
  3. I am so glad the biopsy is soon!
  4. My sweet little girl always has diarrhea. Allergy tests negative. Celiac tests (DNA included) negative. I think our next step is to see a nutritionist with her food/poop journal. Can you suggest anything else I could be overlooking? TIA, Jenn
  5. Results are in. It is NOT celiac. I am going to digest this and then decide what to do next.
  6. I think the antibody testing will be inconclusive for multiple reasons - he doesn't get enough gluten and he is so young. With his reactions (eczema included!) I would choose to do the DNA testing. If he has the genetic coding and such obvious reactions to gluten I would label him celiac and keep him gluten free. HTH, Jenn
  7. Stephanie, Is it possible the Vitamin D problem is a result of celiac? I don't know enough about celiac to know WHICH vitamins are affected. I do know that vitamin deficiency is one of the major problems. Concerned, I am 100% with you on the I want it to be celiac/I don't want it to be celiac. What I really want is a solid answer, NOW. Hopefully one with a solution. I will keep you all posted regarding the test results. Jenn
  8. Good luck either way. Not having an answer is the worst part!
  9. Stephanie, What is the reason the doctor won't order the DNA test? Though expensive it seems like such a non-invasive way to check... I hope your son is feeling 100% and you have some answers very quickly. Concerned, Our posts all take a while to show up. The moderators glance over them before releasing them. That may no longer be the case when we have a minimum number of posts. I haven't looked into it. Your other note is on here and other than age our kiddos seem to have similar situations. My daughter seems mostly healthy. She is on the high side of the growth/weight chart. She has awful bags under her eyes. She has diarrhea almost all the time though she does surprise me with an occassional 'normal' one. I don't know enough about the tests to comment on your son's test results. I hope you have answers quickly. Both, please keep posting. It is nice knowing there are others out there going through the same thing. Jenn
  10. My daughter is 2 and had her panel (DNA included) drawn last Thursday. It was sent from our lab to their parent lab to Prometheus. I am so anxious to get the results. These past 8 or 9 days I haven't been sleeping as well as I usually do. I spend too many moments of the day and night wondering what the results will be. I even dreamt about it a few nights ago. (I was watching the lab tech perform part of the test and it seemed to be negative.) I called Prometheus diresctly to find out when I will see the results myself. They were sooooooooooooooooooooooooooo nice! The gentleman I spoke to told me when they received the sample, that the samples were adequate and that they expect to have them completed on Tuesday. He invited me to call back Tuesday and check on the status of the results. I don't know how long it will take the results to make it from Prometheus to the parent lab to our lab to our doctor.... Long story short. The wait is torture. I know there are others out there waiting! Please, vent here.
  11. Did you ask if her celiac panel included the DNA testing? We're in a similar situation and have decided to do the genetic testing even if we end up paying for it. As far as I've read (someone PLEASE correct me if you have better information)not having the genes leaves them with a less than 5% possibilty of having celiac. In our case if she doesn't have the genes we will be at peace without a diagnosis, keep her gluten free and continue to research other causes for her wheat 'intolerance'. Because she has the symptoms, if she does have the gene(s) we will ask for the diagnosis without the biopsy. If they refuse to diagnose it we will label her ourselves and no one except her doctor, my husband and I will know. Sorry to go on about me/us/my daughter. I felt it was the best way to expressed my opinion without seeming to tell you what to do... I hope you get solid answers, quickly!
  12. It will likely be easier for the new people you meet at university to accept your gluten free diet than the friends you have been around since before your gluten free days. Though it isn't an accurate statement you can just tell them that you have a severe allergy to gluten. You can share the long, more accurate story with those who become good friends and who you find yourself spending the most time with. Gluten free can be done on a budget especially if your body tolerates foods that are processed in factories where wheat is also processed. Rice flakes and corn flakes cereal (READ the labels to be sure there isn't gluten filler in them), oatmeal, polenta or corn grits and eggs are great for breakfast. Peanut butter on celery, tuna salad without the bread and cheese for lunch or snacks. Rice, beans (all kinds), ground meat and frozen veggies for dinner. Eggs are cheap and can be eaten any time of the day. I'm just mentioning cheap foods and assuming that you will have at least a refrigerator and maybe a full kitchen where ever you live. Making your own meals is always cheaper than eating out. If you will be in a dorm you may want to call and find out if they have gluten free choices at every meal. You could also google (or ask someone currently at the school) the restaurants/fast food joints near there where you will most likely go with friends and check out their menus and websites to see what gluten free options they serve. You'll have it all figured out within a month of starting classes. Good luck!
  13. Has she had the DNA testing done? Will they do it through your doctor's office? I know our doctor sends it off to Prometheus and bills insurance for us.
  14. Thank you for the many responses! I think because our diet consists of so few packaged foods I will start off not worrying about shared equipment and see how my daughter does. I can always adjust from there. I am so appreciative of everyone who takes the time to share their stories and words of wisdom... Jenn
  15. We are just getting started here and I am looking for products that fit our lifestyle and are celiac safe. Our diet consists primarily of organic single ingredient products - fruits, veggies, meats, grains... I am in search of organic oats, corn meal, etc. that aren't processed in a facility handling wheat products. I did find some things in GlutenFreeMall labeled OK for celiacs with packages clearly marked 'packaged on equipment that also packages wheat products'.
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