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MitziG

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Everything posted by MitziG

  1. MitziG
    Um, I am sorry, but since when does a 15 yr old get to make decisions regarding his medical care? He gets tested, and take no guff from him. There are over 300 symptoms of celiac, and if he didn't have at least one of them, he would be the healthiest boy alive. As for you- if you are already gluten-free then it is too late for a biopsy. False negatives...
  2. MitziG
    Ok, first of all, you have celiac disease. Your biopsy may or may not show it, but it doesn't matter. Positive bloodwork and a positive response to the gluten-free diet is sufficient to dx yourself. Biopsies are always hit and miss. Sometimes they hit the right spot, sometimes they don't. Unless your GI took multiple (as in 6+ samples) from the duodenal bulb...
  3. MitziG
    Who would rather just keep swallowing pills and suffering than even consider changing their diet! My dear friend, with her own slew of health issues just can't fathom putting her kids on Gluten-free Casein-free diet to see if it helps their ADHD, depression, eczema, bedwetting and constant overwhelming fatigue. Because "that is all they eat is gluten and...
  4. MitziG
    Would son rather have a healthy, living mom, or wheat filled goodies? I am guessing the former. And football or not, if he is celiac too, (which is likely) he needs to stop eating it. Unless you wish to explain to him down the road as to why his football career meant more than intestinal cancer. Once you commit, and get over the hump, it isn't really a...
  5. MitziG
    The ttg isn't specific for celiac, but it is still pretty reliable (above 90%) with your mom having it, I would say you can almost bet on it. You need a full celiac panel done for TTG IGG and DGP and EMA as well.
  6. MitziG
    Actually, the stats you quoted for the DGP were for the older test. The new ones have something like 99% specificity. For your sake, I hope you are right, and this all goes away. But I wouldn't count on it.
  7. MitziG
    Also wanted to add...in regard to blood tests. The only tests my doc ran were the TTG IGG and TTG IGA. The IGG test was 6, a weak positive (less than 4 was normal) the IGA test was negative. Yet when I had my endoscopy the damage was so severe it was visible to the naked eye- dr dx me on the spot and said it was clear I had celiac for many years. Biopsy showed...
  8. MitziG
    I know you don't want this- none of us did either. The reason everyone is being so insistent is because we have all "been there, done that." Yes, you would think a GI who specializes in diseases of the gut would know what he is talking about- but the truth is, few do. There is a lot of relatively new research on Celiac Disease that the vast majority of docs...
  9. MitziG
    Indeed it does! I shall Google it. The problem with vacations is that you spend so much time trying to do cool stuff and you come home exhausted. I want to be forced to zone out!
  10. MitziG
    And colonoscopies are big money makers for docs and not that much value. Do some research- it soured me on them!
  11. MitziG
    It is unfortunate he didn't do a full panel to begin with. Too late now. 4 mos isn't very long. It took me a good 7-8mos gluten-free to notice any real difference. Took dairy free to really feel better. If I were you I would just reschedule the appt for min of 6 months, and stay dairy (and all casein! Free) for that time. I expect by then you will have...
  12. MitziG
    And blue water. I forgot blue water. Very important....
  13. MitziG
    For our 20th anniversary, this is what I want. A week at the beach with NOTHING else to do but nap in the sand. I don't want tourist attractions. I don't want to spend a lot of $. I want solitude and no cell reception. Any ideas?
  14. MitziG
    Also, the missing blood tests we're DGP and EMA..since it has only been a few weeks, you may still test positive if you get them done asap. My sons stayed positive almost a year after going gluten-free. Mine and my daughters were negative within 3 mos though.
  15. MitziG
    You can get a dx without bloodwork...but it depends on the doctor. A few other things can cause villous atrophy: giardia, casein intolerance...seems like one more. But if your symptoms resolve on a gluten-free diet, and if damage heals on the diet, a celiac dx would be in order. As for fevers...yep. sure did. Intermittent low grade fevers, particularly...
  16. MitziG
    The ttg is pretty reliable- even a weak positive is a good indicator of celiac. What your ped should do is run a full celiac panel. Aside from the ttg this should include Deamidated Gluten Peptides and Endomysial Antibodies. Another positive would be indisputable for celiac. But....it doesn't end there. Unfortuantely the majority of the medical commmunity...
  17. MitziG
    Ditto the above. If the damage heals on a gluten-free diet, you have your answer. Silly to go thru a miserable gluten challenge and damage yourself all over again! Personally, if you feel better on the gluten-free diet, I would not even do the follow up endoscopy.
  18. MitziG
    Stupid phone cut off my post. Anyway- enzymes and if she is not better in 3 mos to come back for another endoscopy.
  19. MitziG
    My 13 yo daughter had her visit with ped GI at Celiac Center at University of Iowa last week. Very thorough doc and seemed to turn over every stone. Sadly...no answers. Did rule out porphyria, Lupus, SIBO and fructose intolerance...which was odd cuz she got sick as soon as she drank the fructose solution. Bananas, apples, oranges, grapes, tomatoes and...
  20. MitziG
    I have gotten sick from Ghiradelli before. I believe they process on shared equipment with wheat if I recall.
  21. MitziG
    You have celiac now. You always have. Get in for a full celiac blood test panel, today if possible. That biocard showed anything at all when you are largely gluten-free means you had a heck of an antibody load to begin with. And yes, the little bits of gluten you are getting are enough to make you feel like total crap. Get the bloods and biopsy asap and...
  22. MitziG
    If it were me, I would refuse the colonoscopy. If they schedule an endoscopy, then let them do colonoscopy at the same time. The endoscopy is where they wud find celiac, a colonoscopy may reveal other issues but if you have celiac, that is probably what is causing the other issues! And it has been my experience that once they find a problem during colonoscopy...
  23. MitziG
    I would personally just consider him celiac and start him on the diet. Perhaps the doc will agree to dx him based on resolution of the growth issue on a gluten free diet. The bloodwork isn't going to show it as long as he is deficient in iga and igg. It sounds like they didn't even biopsy the duodenal bulb so of course they missed it. I would say...
  24. MitziG
    Your doctor is wrong. You in fact DO have celiac disease. You have TWO positive celiac tests, one of which, the deamidated gliadin, is VERY specific for celiac. What you will find is that few doctors are aware of the prevalence of celiac,m of how to properly test for it, and that the symptoms are many and varied...and in some cases, non-existent. Most...
  25. MitziG
    Its a pretty awesome pill. I was on it for about 5 yrs before and it completely eliminated periods. 100%. And PMS. And acne. Sadly, it has a much higher risk of stroke and blood clots, and being as I am almost 40, it isn't a good long term solution for me. FYI- if you do ever switch, transitioning to this pill is hard. The first 3-4 months are constant...
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