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MitziG

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Everything posted by MitziG

  1. MitziG
    Hi all, haven't been on here in a few years, because all was well and celiac wasn't on my mind so much as when we were first diagnosed back in 2011. However, my son (13) is once again suffering, and I don't know what is up. About a year ago, he developed the same type of abdominal pains he initially had, along with concurrent depression and anxiety....
  2. MitziG
    I think it would be totally doable. They rely far less on processed foods over there- having fresh whole foods at meals would allow for a lot of options. Her hosts could just be advised of her needs and maybe allow her a spot specifically for her food prep.
  3. MitziG
    The hiatal hernia may very likely be responsible for your bad breath- basically it is letting all of those nasty gut chemicals be expelled through your mouth. Yummy. Depending on when and what you have eaten may affect why your doctor said it was not halitosis. Anyway, a few recommendations... #1 fix the hernia...easy peasy, you can find diagrams online...
  4. MitziG
    Oh SMH the idiocy of doctors never ceases to amaze me. With a first degree relative with celiac, your chances are 1 in 12. Throw in your symptoms, a questionable biopsy and a positive ANA and you might as well be waving a red flag at them. Sigh. Hope by now you have gotten some answers. I am so very sorry about losing your baby. How awful. Stories like yours...
  5. MitziG
    Have you found anything more out? I see your post is a couple months old. If not, was just going to ask if they did an EMA test at all? A positive EMA would definitely mean celiac. My only idea for the increase in ttg is that the disease is continuing to progress because he is getting cross contaminated by gluten. If you have gluten in the house, it is really...
  6. MitziG
    Also, constipation is a hallmark of celiac. My 11 year old was on laxatives from 2 months until he was five...because he was undiagnosed and I didn't know any better to ask about celiac. He was BREASTFED and constipated..that just doesn't happen unless something is really off. They just didn't bother to find out what it was. Gave him acid reflux pills for...
  7. MitziG
    No doubt about it, sorry. Your daughter most likely has it also. Low positive is like being "a little bit pregnant." You can actually have massive intestinal damage have completely negative blood work. She needs an endoscopy done pronto. If you want to put your son through it, keep in mind, celiac can be easily missed with an endoscopy. The intestinal area...
  8. MitziG
    Curious to see what you find out. He certainly can have a negative panel and still be celiac. I would push for an endoscopy.
  9. MitziG
    Your ttg is positive, dgp negative. Ttg is generally Celiac but can also elevate with other autoimmune disorders. If you get a positive EMA then you have celiac. Gene test is controversial at best- if you have the genes or makes it more likely you have celiac, that is all. Glad you are finding a more knowledgeable dr.
  10. MitziG
    SMH it is Drs like this that drive me bananas. Stupid GI and he doesn't know what to look for. #1 Positive EMA = celiac. Period. #2 Celiac can not be diagnosed with a colonoscopy. He is either dumb or just wanted to bill for an extra test. #3 Celiac is easy to miss in a biopsy. It is often patchy and many drs only take one or two samples...which I would...
  11. MitziG
    You have celiac. Your low IGA is causing false negatives most likely. Dgp test I specific only celiac. However, having a diagnosis is helpful because without having it, doctors wont take you seriously when you say you need to be gluten-free. If you are hospitalized, you may not get to order from a gluten-free menu without a diagnosis. Many times it will be...
  12. MitziG
    Alot of celiacs will react to dairy in the same way as gluten. The proteins look similar and our immune systems often think they are the same. Joint and body aches are really common with both.
  13. MitziG
    Alot of celiacs will react to dairy in the same way as gluten. The proteins look similar and our immune systems often think they are the same. Joint and body aches are really common with both.
  14. MitziG
    Word of advice when it comes to doctors...be prepared to tell, not ask. Most of them (even GIs) don't know diddly squat about celiac. Spend a few hours on this forum and you will know more than they learned in medical school. Be your daughters advocate. She almost definitely has celiac and don't let them convince you otherwise. Also, the biopsy, BEFORE she...
  15. MitziG
    Of course you can taste gluten! It is called DELICIOUSNESS. Gives it away every time for me. As in, "Wow, these enchiladas are soooo good I cant believe these are corn tortillas!" They weren't. Three days in the hospital, months of pain afterwards. Something being delicious makes me highly suspicious now.
  16. MitziG
    LOL,. I frequently have dreams where my celiac miraculously just "went away" and so I dig right into a delicious donut...I really miss real donuts. The gluten-free ones are just...meh. I always wake up so disappointed!
  17. MitziG
    Left side pain is fairly common...can be from trapped gas or stool, and that can cause major pain. Can also be something more serious like diverticulitis. But your dr probably would have caught the last one.
  18. MitziG
    I had undiagnosed celiac for 30+ years, was horribly ill. But all but one of my blood tests came up negative, and the only positive one was positive by ONE point. That is it. Had to beg for a biopsy. The damage was so visibly bad I was diagnosed on the spot, even before the biopsy came back. GI said it was obvious I had had it for many years. So, yes. You...
  19. MitziG
    Your sister not having stomach issues doesn't mean a thing. There are over 300 symptoms of celiac...and you can have all or none of them and still have it. As for you, even if you don't feel very sick after eating it, you are still doing as much damage as someone who ends up barfing for three days straight because they used the same toaster that is used for...
  20. MitziG
    YES! And it really makes me @$%^*$^&*#^$% angry too! If they must cheat, then I wish they would stop telling people they have celiac disease.
  21. MitziG
    So you not only cheat, but you do it in public? That is why the rest of us have waiters that don't take us seriously, friends that say, "So and So can eat a little and it doesn't hurt them'" and family members who roll their eyes at us when the restaurant choice for a family dinner is limited to ones that the four celiacs in my family can actually eat at...
  22. MitziG
    "The only reason I was dx was because my son was..." That is your reason. He has to go through the rest of his life not eating gluten, and you would never, ever put him at risk I am sure. But kids do what they see. If you swear, they swear. If you smoke, they smoke. And if you cheat, you can bet he will too. His life is very literally in your hands, cuz it...
  23. MitziG
    I have found a pretty close second to Pizza Hut pan pizza (because I hear ya! Thin crust isn't the same!) Chebe cheese bread mix (Which you can actually make yourself with tapioca flour and tapioca starch much cheaper and if you aren't lazy.) Anyway, two boxes makes a ROCKING large pan pizza with a delicious chewy crust that just gets better with re-heating...
  24. MitziG
    What you did, regardless of the situation and how you felt (Because believe me, we have ALL been there) makes life for the rest of us REALLY hard. One waiter that has seen you blow it off after he worked hard, means that same waiter probably wont try as hard, or at all, for the next celiac that comes in. Now, you know what you did was wrong, and you know...
  25. MitziG
    I fantasize...but no, I don't cheat. Here is why- right now, you feel unwell from eating gluten. The longer you are off it though, the immune response will become stronger. That doesn't mean the disease is worse, it means your immune system has healed enough to launch a full out WAR against gluten, as opposed to just throwing snowballs. For me, a few months...
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