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Scarletgrrrl

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Everything posted by Scarletgrrrl

  1. Scarletgrrrl
    From my understanding, it is the ends of the villi that produce the lactase that helps digest the lactose in milk. When the villi are damaged and inflamed, they don't produce the lactase which leads to lactose intolerance. Some individuals however may have a preexisting intolerance unrelated to the small intestinal damage. NCGI does not damage the small intestine...
  2. Scarletgrrrl
    My blood tests were negative. I had the biopsy and I have stage 1 lesions which would explain why the blood tests were negative. (It wasn't the full panel though). I have had a lot of symptoms though and since the biopsy have been diagnosed with iron deficiency anemia.
  3. Scarletgrrrl
    I will be getting the results next friday when we go for the follow up appt. I thought it would be a good idea to be prepared first. Thanks for the suggestion about contacting the celiac support group for a good GI. We definitely won't be going to the GI I saw. He had a locum at my initial appt who said "I probably had IBS" then said to just have 2 slices...
  4. Scarletgrrrl
    After recently being diagnosed with gluten intolerance (marsh 1 lesions), I got my 4 yr old son blood-tested. I am not sure which tests they did (they didn't do the full panel with me) but the nurse told me over the phone his gliadin is elevated and his iron levels are low. I have to wait a week until my appointment, but I thought I would post to see what...
  5. Scarletgrrrl
    Have you had your iron levels checked? Shortness of breath and wounds that take a while to heal are signs of iron deficiency. Also, have a look into FODMAPS diet. Cutting out certain foods may help with your GI isues.
  6. Scarletgrrrl
    My partner baked a packet mix cake (with gluten in it) and I couldn't stop sneezing smelling it cooking.
  7. Scarletgrrrl
    Thanks for your post Peter. I suspect this is celiac disease too. A friend was diagnosed in her 50s and her villi will never fully recover. I don't want that to happen to me and am taking this very seriously. I also suspect my dad and my son have it too. My dad is now in a nursing home with dementia and we are awaiting the blood results for my 4 yr old son...
  8. Scarletgrrrl
    Yes I am planning on remaining strictly gluten free. I am now so sensitive to gluten and have had my share of horrible symptoms: abdominal pain, breast and back pain, hair loss, tingling in the hands and feet, the list goes on...
  9. Scarletgrrrl
    I got my results from my endoscopy a month ago now and I am still trying to work things out. I have duodenitis (inflamed duodenum) with increased intraepithelial lymphocytes. My villous crypt ratio is 2:1. (I have read the normal ratio is 4-5:1). From my research this is called mild enteropathy celiac disease (one article even calls it a wolf in sheep's...
  10. Scarletgrrrl
    We have a similar result from the biopsies. I recently had an endoscopy and the results were that I had increased intraepithelial lymphocytes. This is a biomarker for celiac disease but you also have to have the villous atrophy. I was diagnosed with mild duodenitis (inflammation of the small intestine consistent with gluten sensitivity). My villous/crypt...
  11. Scarletgrrrl
    Thanks Lisa I am going to book my son in to see the doctor. I will also check out the newbie thread. I see my doctor tomorrow about my iron levels. I will ask her for a copy of the celiac blood tests (I had it done on 2 occasions). S
  12. Scarletgrrrl
    Thanks D
  13. Scarletgrrrl
    I just called the doctor's surgery and my iron levels are very low.
  14. Scarletgrrrl
    Hi Lisa thanks for your post. I suspected I had a wheat allergy as a 14 year old and tried my best to limit my consumption. I never even thought to get tested back then. In my 20s I got blood results back as borderline anaemic. The doctor didn't do any other tests putting it down to me being a vegetarian at the time. When I was about 25 I would get liver...
  15. Scarletgrrrl
    Thanks for your reply Cycling Lady I was very sick for the whole 7 weeks of the gluten challenge. I was so sensitive that I am not sure if I had enough gluten for the challenge. The gastro. seemed to think if I had celiac I would have to avoid soy sauce but with gluten intolerance I don't have to be so vigilant. I tested his theory yesterday. I was at a...
  16. Scarletgrrrl
    Hi I finally had my follow up appt with the gastro. on thursday. The results were that I had mild duodenitis consistent with gluten intolerance. I have an increase in intraepithelial lymphocytes and the villous/crypt ratio was 2:1. They unfortunately only did 3 biopsies. They said it was gluten intolerance and not celiac disease but I just don't know how...
  17. Scarletgrrrl
    So glad I have found this post. I am going to Melbourne this weekend. i am newly gluten free (still awaiting the results from my endoscopy). I was a little daunted by the thought of trying to find gluten free food but you have put my mind at ease.
  18. Scarletgrrrl
    When I realised it was gluten that was responsible for my health issues I stopped it immediately. I then went to a gastro. who suggested I reintroduce it 2 weeks prior to my endoscopy. A friend who is diagnosed with celiac introduced it 6 weeks prior to her endo. and after reading the uni of chicago celiac centre's website, they suggest 6-8 weeks. I made...
  19. Scarletgrrrl
    Look up the university of chicago celiac centre's website. They have lots of FAQ about the whole testing procedure. If your son has been gluten free for 2 years nothing will show up on the blood test or biopsy. It is recommended to be consuming gluten for 12 weeks prior to the blood test and 6-8 weeks prior to the endoscopy (though different doctors will...
  20. Scarletgrrrl
    I am now gluten free. I would love my son to be gluten free too (in fact the whole family as I agree gluten isn't good for anyone IMO) My son gets eczema which seems to flare up more after he has eaten gluten. Occasionally he has complained of tummy pains which haven't been related to gastro. He has really stinky farts and poos. The doctor wanted to wait...
  21. Scarletgrrrl
    Hi I had my endoscopy on the 11th july and my follow up appointment is not until the 8th August. It is doing my head in having to wait! I called up the secretary to see if I could be on the wait list if an earlier appointment comes up but the gastro. is filling in for another doctor and is fully booked. I first thought I may have celiac after my doctor...
  22. Scarletgrrrl
    When I went to the gastroenterologist, he thought maybe my symptoms might be IBS. (I know they are from gluten). Anyway, he suggested I look up the FODMAP diet. This may be of use to you. There are suggestions of certain foods to avoid: gluten, dairy, honey, some fruits, etc.
  23. Scarletgrrrl
    I recently did the gluten challenge and I know how tough it can be. I was sick for the whole 7 weeks. I persevered however to get a proper diagnosis (still waiting for my results). For me it is important to know whether this is celiac or gluten sensitivity. I suspect my 3 year old son has issues with gluten and my dad is in a nursing home with dementia and...
  24. Scarletgrrrl
    If you want to get properly diagnosed for gluten sensitivity/celiac you actually need to continue eating gluten. When you do give up gluten, it will take a while for your body to recover. If you are highly sensitive to gluten you will have to be careful of cross-contamination. I have replaced my old toaster, but haven't had a chance to buy new wooden spoons...
  25. Scarletgrrrl
    The endoscopy and colonoscopy procedure was a breeze. I had it doen on thursday and now have to play the waiting game for the results. Like the previous poster, the preparation the day before was pretty tough (and the gluten challenge!) I don't think they check the liver with this procedure. You may need an ultrasound or get specific blood tests for the liver...
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