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Ginger7

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Ginger7

  1. Ginger7
    Oh yes, we discussed the pros/cons of gluten-free B4 scope and he is back on gluten until scope. So, I'm looking forward to more information from scopes, which I hope r soon. I sure hope his colonoscopy prep is not as bad as mine was...
  2. Ginger7
    Hi, I've posted b4 about my 8 year son who has persistent stomach aches and diarrhea with occasional constipation. His labs came back mostly normal, although a few notable things: Low ferritin Low vitamin D CBC normal ESR 9 (cutoff less than 10) Celiac panel negative serology, one positive gene DQ2 Fecal calprotectin 222 Way down in growth charts...
  3. Ginger7
    Also note that b12 is absorbed in the latter part of intestine, the terminal ileum so one possible idea to throw out there is that celiac has caused damage in the duodenum or first part of intestine causing the low iron. The latter part of the intestine, terminal ileum may not be damaged and hence b12 is not low. What is the range of b12 given? Seems like...
  4. Ginger7
    Assuming your doctor has ruled out obstructions and/or inflammatory bowel diseases such as ulcerative colitis and crohn's disease? Though you say CT scan normal which might be helpful, have you retrieved all your reports and maybe go for second opinion? What about labs? Slight fever suggests some sort of inflammatory process ongoing. Were samples taken for...
  5. Ginger7
    As I'm sure others will note, if you want to know how your intestines look, you need an endoscopy and your GI will take 6-8 samples to detect and confirm celiac. You have to be eating gluten, as your intestines can begin the healing process quickly and therefore make any biopsies falsely negative. I don't know how long a few days or weeks gluten free would...
  6. Ginger7
    I would be concerned with the suggestion to stay on miralax indefinitely? That seems strange to me, could be slow transit?? But could also be masking underlying disorder. Agree with previous post, suggest tests for celiac and inflammatory bowel diseases.
  7. Ginger7
    Went to John's Hopkins, good news is don't have to do anything but monitor. So I will get an MRI in six months. Bad news-no fight club for me
  8. Ginger7
    Well, here is an update. CBC pretty normal, lots of low normals but within range. A few interesting results, B12 high normal Ferritin 17 with low end of range 10 Vitamin d low 34 with low end of range 31 I've read that both iron and vitamin d are absorbed in duodenum vs b12 in the terminal ileum, early celiac disease often presents with low iron and...
  9. Ginger7
    Someone already mentioned it but thought it was worth repeating, what about homemade shakes? You could make something free of foods she cannot eat but also sneak in some protein and other good stuff. My kids are the same way and sometimes they will drink a healthy tasty shake.
  10. Ginger7
    Just wondering, are you certain it was poison Ivy and not DH which can c Be extremely itchy with some clear fluid. Need a biopsy of area next to rash to test. DH is demirtitis herpertiformis.
  11. Ginger7
    Why is it that my ped dr has no idea what I'm talking about regarding Prometheus testing??? They said first they do bloodwork, then celiac testing then referral to GI. Why on Earth would you subject an 8 yo to multiple lab sticks when a parent has Celiac? I ordered the test kit myself, it will be overnighted to my house and I'm bringing the requisition slip...
  12. Ginger7
    Thanks everyone, I feel alittle better. At least for my son, regardless of testing outcome, I will be going gluten free for him since I know my tests weren't 100%, but I feel tremendously better gluten free. All my vitamins were very very low due to malabsorption and seeing him in the bathroom sealed the deal for me as it reminded me of me!! Having trouble...
  13. Ginger7
    And I want to say I had no idea he had loose large volume stools until I finally "caught" him in the bathroom today, looked at it and yes I took a picture with my phone. I don't care if people think that's gross, actually I don't think this community would...he is 8, it's hard to get him to tell me what his poop looks like!! The other symptoms are very sketchy...
  14. Ginger7
    I've made a few posts since December 2011, all about myself. I have gluten intolerance/Celiac. Call it what you like though I do not have a positive biopsy. My genetic testing was a category 7 from Prometheus, very high risk, w/ only 8 as highest risk number. I have three kids, 8 yo boy, 2 yo girl and six month old girl. My son has always been small but...
  15. Ginger7
    Keep it simple, rice and plain meat are great options. By just keeping foods simple, you can avoid gluten without spending a ton of money. I found that by starting out simple, I could adjust and slowly explore other foods without getting overwhelmed.
  16. Ginger7
    Oh, I didn't think of that, thanks!
  17. Ginger7
    Anyone know the difference btw links above and the iPhone app?
  18. Ginger7
    I know at times my WBC is below normal. My hematologist said that it is autoimmune and related to my celiac. If WBC are low, then yes, one could be more susceptible to illnesses. Not sure about the duration but it sounds possible, especially if your body is still healing from having gluten, then it might take longer to heal.
  19. Ginger7
    I'm sorry to hear this and you must be overwhelmed. You might also start tracking your food, symptoms and bowels. There is a neat app called GIMonitor, it's free. It tracks and graphs your symptoms, plus it has a social button. They refer to it as ButtBook, instead of FB. You might find great support from here and there. It's nice to find a forum where you...
  20. Ginger7
    Yep, I'm with you, over 20+ years of symptoms though only aggressively pursuing reason for last 5 years. I think I just accepted it as normal or normal for me since I had IBS. But when it impacted my second and third pregnancies with complications, I knew something was wrong. Thankfully, my kids are healthy, and I'm slowly getting better now that I'm gluten...
  21. Ginger7
    Should have said melanosis coli above, not colo. Anyway, there are a lot of us "IBS" patients and I like what I read on one of these boards that says IBS stands for I Be Stumped!
  22. Ginger7
    Well, Madiva, I had a similar experience with my scope in December. It revealed "melanosis colo" which is a pigmentation of the intestines and supposedly related to laxative abuse. I was told the same thing, and I know my GI thought it was all in my head even though I had malabsorption, low WBC and many other symptoms I won't go into here. I had diarrhea...
  23. Ginger7
    Btw, had hematologist appt today and he said low WBC was autoimmune, related to celiac. Not concerned at all. Will see him again in three months just to keep an eye on everything.
  24. Ginger7
    Guidelines in Europe treat B12 deficiency if less than 500. US guidelines generally do not treat until levels fall below 200 unless you have a good dr who reads and understands this. As someone else said, it is a measure of storage which takes years to deplete so if one is already on low "normal" end, it could be that the stores are declining. I agree, if...
  25. Ginger7
    Ask for your results and look at your overall results. Was anything else out of range on your complete blood count? If you use Quest Labs, there is an awesome app called Gazelle. I have it on my iPhone and you can request your labs and then always have the results on your phone. A few weeks ago, my WBC was 2.9. I also had some other abnormalities like low...
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