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KBart

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Everything posted by KBart

  1. KBart
    Unforunately, we haven't had much luck with the SIBO stuff either. It's so frustrating. Our GI would only do one round of Flagyl. It helped...but I don't think it totally got rid of it. She even did a repeat Endoscopy (to confirm celiac disease because of inconclusive results before) and they did an intestinal aspirate (tested the fluid in the intestine...
  2. KBart
    I have low hopes the OP will see this, but did you ever get results back? My daughter is getting breath tested in 2 weeks and I highly suspect SIBO. Her symptoms are exactly the same.
  3. KBart
    My understanding is false positives are possible due to other autoimmune diseases and liver issues. I don't think most doctors will diagnose based solely on TTG levels unless it is really super elevated. Many still require a positive biopsy. I've read some will diagnose based on positive blood test, positive genetic test, reduction of symptoms on a gluten...
  4. KBart
    So our second doctor says she can't say it's celiac either. Not definitively. Interestingly enough, she is running additional tests. Thyroid, parasites, occult blood, another Lyme test (my daughter had a tick bite in March, tested negative but doctor still treated), and genetic for celiac. She also ran the TTG again. Initially her TTG was 47. After 5 weeks...
  5. KBart
    That makes sense. Her levels were obtained through biopsy analysis. So yeah, since her damage was patchy, maybe the levels can be too?
  6. KBart
    My daughger's biopsy had some inflammation and one sample of villi that was shortened, she also had a positive TTG blood test and clinical symptoms, but the damage was not severe enough for the GI to give her a celiac disease diagnosis. Just a little background there. We are getting a second opinion. My question is about the disaccharidase levels. Her...
  7. KBart
    Yes, doctor said to go gluten-free, but will NOT diagnose her with celiac disease. She says she doesn't have it now. Her doctor said to go gluten-free and see if her symtpoms resolve themselves. She will not give her a celiac disease diasnosis at this point. Not based on the blood work or the biopsy. That is why I'm looking for a second opinion. I DO think...
  8. KBart
    We have a second opinion appointment in 2 weeks. We've been gluten-free since the biopsy and she still has constant stomach pain but some of her other symptoms have lessened (or totally gone away). Her doctor said it could be early celiac before it caused more damage and said to go gluten-free but like I've heard on here before, you aren't a little bit...
  9. KBart
    I started a new thread on this since my old one went down a rabbit hole. My 4 year old tested positive with a TTG test and result was 47 on a range of <20 normal. She has clinical symptoms such as constant stomach pain, constipation, anger and frustration and eczema like rash. Her doctor says this pathology report doesn't support a full celiac diagnosis...
  10. KBart
    If I missed a sticky on this, I apologize. I had a few questions about specific items in terms of replacement. 1) Cast iron - I saw several threads but I'm just wondering if I should just repalce or try and clean. 2) Le Cruset Enameled cooking pot - the enamel isn't worn off but the bottom is black and I haven't been able to get it clean. 3) Food processor...
  11. KBart
    No worries on the derail. I just have to go back and read all these links now! Every little bit of info helps...
  12. KBart
    While her stomach pain hasn't subsided, she seems to have an increase in thirst at times. And she's barely eating. Are these possibly detox symptoms? I'm wondering if I should get her sugar and thyroid tested in case it is something else causing the increased TTG.
  13. KBart
    No worries!
  14. KBart
    Thank you. I only have the one daughter suspected of celiac disease. She is the one with the eczema and pain, so no son. I already called to make another appointment with another GI doctor. I'm praying I can get her in quickly. My FIL is also a pediatric infectious disease specialist so I'm going to see if he can show the pathology report to one of...
  15. KBart
    This is for my 4 year old just to clear it up. IEL's are the lymphocytes I believe. She said there was no increase in those but there was inflammation and damage to the villi in the duodenum. And yes, when I pressed her to characterize the marsh scale, she would not. She said this may be celiac disease early on. She suggested we contact a dietician and...
  16. KBart
    So I got results back for my daughter's biopsy (not in hand yet but a call from doctor) and she said there was damage to the villi in the dueodeum but not at the level necessary for a diagnosis. She would not characterize it on the scale because she said it isn't celiac. She she there are no increase in IEL's either. What else could cause damage to the villi...
  17. KBart
    I'm glad to say the heartburn and sore throat went away. Her stomach still hurts and were on day 5 of gluten-free diet. I'm hoping and praying for more relief soon.
  18. KBart
    My daughter had the endoscopy yesterday and complained of sore throat but also heartburn yesterday evening and this morning. I know the sore throat is common but how about heartburn? Is that typically a symptom after an endoscopy? I'll talk to her doctor today but thought I would ask. Also, how long should we expect a little bit lessening of symptoms from...
  19. KBart
    Thank you. Yes I will share here when I get results. I think what is bothering me more than a negative test is her doctor saying if it's negative it can't be celiac. If we get a negative biopsy I will probably switch doctors and try and find one who would be willing to give us a diagnosis with the blood test and alleviation of symptoms once on the diet...
  20. KBart
    My 4 year old had the scope and biopsy today. I'm so glad that's behind us. I'm terrified of a negative biopsy when I'm so sure she's reaction to gluten and has a positive blood test. It doesn't help that the doctor keeps saying things like, " If it isn't celiac disease we will keep searching for the cause" and "you can start cutting back on gluten if you...
  21. KBart
    Her cbc came back normal so she doesn't have anemia right now. Maybe it's just allergies.
  22. KBart
    My daughter has a positive test but no diagnosis yet (waiting for biopsy). Has anyone had children (or themselves) have frequent nosebleeds as a celiac disease symptom that went away once becoming gluten-free?
  23. KBart
    I spoke with the doctor a little more and she will take 6 biopsies. 4 from the intestine and 2 from the bulb. Is this standard practice? Is there really any way to convince a doctor to take more? Is more necessary?
  24. KBart
    Thank you all for your help. It is great to hear other experiences. As common as gluten intolerance or just people who feel better off gluten is, and I have 5 close friends who are gluten-free, no one has celiac disease. So finding real life experience is hard. We're leaning toward having the biopsy done. If she's celiac disease, I want to try and get...
  25. KBart
    Thank you all for your replies. I keep going back and forth on the decision. But I'm still gathering information at this point.
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