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researchmomma

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Everything posted by researchmomma

  1. researchmomma
    Thank you. There have been many of you that have been so helpful. I think I would be certifiably insane without the help, support and advice. Good idea on the testing. It will be interesting to see how J turns out on Enterolab. She will probably be double DQ4 with my luck!
  2. researchmomma
    Your picture is too cute! I talked to hubs a little bit about it. If my daughter comes back with some of the genes that show sensitivity for gluten I think he will be more than willing. He agreed that we should have the initial testing done. I don't think my daughter had any of the AGA testing. That would have been helpful. She also didn't have the...
  3. researchmomma
    I would like to have both of my children evaluated for gluten ataxia. One has seizures and numb pinky and is clumsy along with several other gastro issues, asthma and eczema. The other was hypotonic at birth. He was screened for all types of disorders but none were identified. We figured that during the course of his life we would find something that would...
  4. researchmomma
    Dr. Zelnik concludes that the therapeutic benefit of the gluten-free diet was demonstrated only in patients with transient infantile hypotonia and migraine headache. That is what my son has! OMG this is going to be hard to convince my hubs but I may need to try! I think I will get his blood work ordered first. And mine this week.
  5. researchmomma
    Absolutely amazing. I can't wait to get back to eating gluten free. I am excited about it. Glad you are all on the road to recovery! Happy New Year and so glad you celebrated the new year and your new life!
  6. researchmomma
    next I am going to have to focus on my son. He has been hypotonic since birth. Didn't walk until age 2 (didn't stand either) and he is still floppy and uncoordinated. My husband isn't going to buy this one so easily and my son will not want to go gluten free either. Maybe if I explained that it would help him run like his friends but I can't promise that...
  7. researchmomma
    Oh and yes, I have list on my computer and I just added it.
  8. researchmomma
    I am amazed you are still alive. Seriously. We have an agreement that she will tell me stuff that is happening to her even if unrelated. So she told me about her pinky again. It has been numb for about a month and I told her that I doubt that was related and we laughed. I just read about gluten ataxia and I am once again floored. When will I not be...
  9. researchmomma
    I find the genetics so interesting. I am a research geek though so that is no surpise. Nora your siggy is interesting. So you had DH and you are double DQ5 not the classic DQ2 or 8. So very interesting. I am so curious to see what my DDs HLA DQ sequencing is. I will need help interpreting I bet. Since she has seizures I wonder if she will be a DQ...
  10. researchmomma
    Leftover potato wedges with cheese on top with a fried egg on top.
  11. researchmomma
    They have to show you the ingredients! I asked about their hot chocolate recently and the woman handed me the huge bag and said she didn't know but I was free to look. I think you ran into an A$$.
  12. researchmomma
    your my kind of girl! Last night: Bonesless prok chops in crockpot with gluten free green enchilada sauce and diced green chilies. After several hours, shred meet and serve on warmed corn tortillas, salsa, cheddar cheese, sour cream, etc. Serve with refried or black beans. It's yummy!
  13. researchmomma
    I am new here too but I want to tell you that you came to the right place. There are some wonderful people on this board that will help you decide the best course of action for you. Sorry you have been so sick but I have a good feeling that you will be feeling better very soon! Welcome and Happy New Year!
  14. researchmomma
    I love to cook and I am working to make my favs gluten free. Here is one of our all time favorites that is a crowd pleaser. AND it is so easy. Open Original Shared Link Depending on your part of the country, you may not be able to get flank steak. You can use this marinade with chicken or pork loin too. It is so good. I use Tamari instead of soy...
  15. researchmomma
    Now that is interesting! And most GIs do not believe this. If you know one, please let me know because I will fly my daughter there for a consult. I run clinical trials and I plan to offer a wager to my GI at our next appt that there will be new data to show that all those biopsied confirmed celiacs without the genes ARE Celiacs even though so many GIs have...
  16. researchmomma
    Wow, your story just stuns me. I guess it shouldn't. Every Celiac I meet (or gluten intolerant as well, they have some horrific stories too) has a story. Rarely is it as simple as, I was diagnosed after one month. I know they are out there but they are the lucky ones. Two of my friends almost lost their babies. I spoke to one of those friends last...
  17. researchmomma
    I was a bit shocked when I read his statement. I am new to this as you know, but I am a scientist and that is a BOLD statement. My GI follows his advice I guess because in her mind you cannot have Celiac if you don't have the two genes. In addition, i don't think she believes in NCGI (I will be discussing this with her in Feb). I just read another...
  18. researchmomma
    This is on Dr. Fasano's website. interesting. What is the meaning of HLA DQ2/DQ8? As an autoimmune disease, celiac disease is the consequence of the interplay between genes and the environment (gluten). We don
  19. researchmomma
    Thanks for the nice comment! Now I need to stop focusing on all of this so I can focus on work. I am obsessed but I know I will be fine once she is back on the GFD and feeling better. Whatever the outcome. I just read the article by Dr. Fasano on Gluten Intolerance and how everyone is coming out of the woodwork to say they have it so the GIs are . I...
  20. researchmomma
    LOVE THAT: SID
  21. researchmomma
    I forgot to come back and see your answers. So 9 days late should reveal a very positive pregnancy test. In other words, you should have tested positive at the docs office. My guess (and I am sorry to say this but I want to be honest) is that you are experiencing a chemical pregnancy or a blighted ovum. I had several of these while trying for five years...
  22. researchmomma
    Her Dad has it. She also asked me what they would be looking for in a scope if not for Celiac. I mentioned hernias and erosion. She also is worried that there might be something more scary wrong with her so she would like the scope for those reasons. She is a smart girl and she knows it is best to get this out of the way now. She liked how she felt...
  23. researchmomma
    Well first off, thanks to all of you for listening to me ramble. I come here and spill all the thoughts that are flowing through my brain. If did this with my friends (more than I already do) they would think I was nuts. They have all been wonderful though in making sure J has gluten free foods or snacks when she is with them. They have watched her suffer...
  24. researchmomma
    Just to be clear, the endocrinologist wants her scoped in hopes that they will find a histological reason to put her on prilosec, not to check for celiac (odds very very low since she doesn't have the gene, as you know). However, the endo did say, she will biopsy because it is standard protocol to do so during an endoscopy here at Children's. So I don't...
  25. researchmomma
    Well not exactly. She is staying glutened until they tell her scope or no scope. If they say no, she goes gluten-free. If they tell her yes to the scope, she will go gluten-free after the scope. She knows she needs to be gluten-free. I did let her decide if she wanted to be scoped or not. I told her that they would probably find nothing which...
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