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MitziG

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Everything posted by MitziG

  1. MitziG
    Please be prepared that you still may have negative blood tests. It doesn't mean you don't have a problem with gluten, and it doesn't mean you aren't celiac. But blood tests miss 30% of celiacs...they just aren't that good yet. Please don't let your doctor tell you that gluten can't be your problem. As for endoscopy...positive bloodwork is just that.....
  2. MitziG
    Sick vs dead....is there really a debate here? Get some antibiotic now, pronto.
  3. MitziG
    bingo. Baseline crappiness hit it on the head for me. In the beginning (as a child, I reacted fairly quickly..but doctors said it was just wheat and to remove wheat from my diet. Never mentioned gluten. As an adult, the immediate reactions were gone and I just randomly puked, had diarrhea and felt majorly fatigued all the time. Having been gluten-free for...
  4. MitziG
    Yes it makes perfect sense to us. Most of us spent a large portion of our lives feeling like that, and having doctors either ignore us, tell us we were depressed, or act like we were hypochondriacs. Don't expect to find a doctor who will listen. Could happen...but they are few and far between. You do however, need to find a doctor who will do what you...
  5. MitziG
    Your daughter is either celiac or gluten intolerant. The weight gain during the month you took wheat out of her diet makes it obvious. Celiac is hard to detect in young children. Your GI seems the type who wants to wait until she has obvious damage before diagnosing. Try to persuade him to dx based on a positive response to diet. If he won't, find another...
  6. MitziG
    A day or two off gluten won't hurt anything. Generally bloating will diminish in that time frame. Just make sure you don't go gluten-free any more than that!
  7. MitziG
    I don't think vomiting will mess up the tests since gluten is absorbed through the mucous membranes...which is why people with celiacs will get sick from toothpaste that they don't swallow.
  8. MitziG
    Right now, get a complete copy of your labs, post them here. It is difficult to advise you without knowing for sure what they say. If the labs are negative for celiac...the allergist might be worthwhile. Commonly, celiac and gluten intolerance will trigger other food intolerances. Once you remove gluten from your diet, many food sensitivities will likely...
  9. MitziG
    Your new GI is ignorant. Constipation is extremely common in celiacs. And EMA is very specific...she has celiac disease. Now...is that ALL that is going on? I can't say. I would recommend you return to your more knowledgeable GI and request an endoscopy.
  10. MitziG
    Ok, first of all... TTG and DGP are both celiac blood tests. You need to ask your doctor for the actual results, along with normal ranges, and post them on here. There is no reliable testing method for gluten sensitivity or intolerance currently. It is trial and error. Now, if you have positive TTG and DGP then you have celiac disease. The DGP in particular...
  11. MitziG
    I think we may have gotten a clue. Daughter has been eating a TON of applesauce lately- her new favorite food. This morning I made some paleo pancakes with applesauce in them- and she goes running to the bathroom. I am wondering if we are dealing with fructose malabsorption?! I was just reading about it, and it kind of fits. At least there is a reliable test...
  12. MitziG
    That is good news. Just a thought...really a theory I have...my DS was hypothyroid as well, but not on meds as it was minimal and I wanted to wait a bit to see if being gluten-free helped. 1 year gluten-free and it actually was a little worse. And his ttg remained elevated. Then we went casein free as well, and 3 mos later his ttg was normal and thyroid had...
  13. MitziG
    Not sure where this topic should go, but wanted to share. Our whole house has been gluten-free for 18 mos due to kids and I being celiac. Hubs came along by default. he is a slim guy, no weight problems, active. But he has had moderate to severe sleep apnea for a good 10 years. He finally got a CPAP last year. Being gluten-free didn't make a difference,...
  14. MitziG
    I like Takalas idea! Ignorant doctors abound! Honey, you have a problem with gluten. Maybe you aren't celiac, but who cares? Gluten is messing you up bad, and you don't need a drs permission to feel better. So, two options here. You can start eating gluten again, hunt down a more knowledgeable doctor (good luck, they are few and far between) and get thorough...
  15. MitziG
    Yeah, its not safe. If they are continuing to use it for gluten, sanding won't help because it will just keep getting contaminated. I think the plastic tablecloth when you use it is the only way to go.
  16. MitziG
    And also, the celiac panel is a blood test- a complete panel of all 6 tests should be done. Most docs only run one or two and call it good, and likely that is all that was done on you before as well.
  17. MitziG
    As the above poster mentioned, when you have an immediate family member with celiac, the recommendation is to be re-tested every 3-5 years. It is not elective and your insurance should cover it without batting an eye. Chronic constipation is a big celiac flag as well, and you should be tested again because of that. Then, by all means, do the diet! As someone...
  18. MitziG
    Another option is to buy your own water distiller. We had a countertop one for about 10 years before it broke- was around $150 I think? Disttill your tap water.
  19. MitziG
    Definitely get thorough testing asap. With celiacs in your family tree, your chances of having it are higher than normal. Do NOT go gluten free until all tests, including endoscopy, are done. Going gluten-free now will cause a false negative test result. After the tests, regardless of the results, try the diet for several months, strictly. You will...
  20. MitziG
    I correct myself, his total IGA was a bit high. I re-read the ranges. That may or may not be a red flag, but isn't necessarily a marker of celiac.
  21. MitziG
    All of his test were within normal range, nothing to indicate celiac there. A full celiac panel was not done however, and it is possible for the other tests to be positive still. Colonoscopy biopsies can NOT show celiac. It is a common misconception among doctors that they can for some reason. The opposite end of intestine needs to be biopsies, the duodenum...
  22. MitziG
    Before the whole house was gluten-free, yes, that is exactly what happened, all the time. Hubs is the only non-celiac, and I tried just keeping a few gluteny goodies and bread for him, but inevitably, cross contamination would happen. The kids were always sick and puking and so it just became the only reasonable thing to do. Now, have you and your husband...
  23. MitziG
    Neither of them have any reflux issues, or heartburn type symptoms (though DS DID have for years prior to celiac DX, hence the PPIs. From what I just googled about EoE that would seem to rule that out then, wouldn't it? Last night, DD had hamburger, lettuce and tomato on a corn taco shell (Ortega) She had stomach ache and diarrhea until 6 am this morning...
  24. MitziG
    Hmmm, no I hadn't heard about Chex. She eats gluten-free rice Krispies too- but Chex is the usual so I may have to rethink that.
  25. MitziG
    I have been battling acne for 20 + years. I have done tetracycline, erithromyacin, RetinA, Aczone....multiple birth control pills. The only thing that helped was Yaz birth control, but I had to off it a year ago. Being gluten free didn't help, much to my disappointment. When I ditched casein as well...what a difference! Inflammation is at the root of acne...
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