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MitziG

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Everything posted by MitziG

  1. MitziG
    You are aware that lactose intolerance is different than dairy intolerance, right? If you are lactose intolerant, you can usually have all the delicious dairy goodies you want, you just need to take lactaid (or similar) tablets in order to digest it. Lactose is milk sugar, the enzyme needed to digest it is lacTASE, and that enzyme is produced on the tips...
  2. MitziG
    I think we all can relate. Sometimes it IS just so frustrating because it seems like life revolves around food! But you HAVE to change your attitude. And you HAVE to stop cheating! How can you expect others to take your diet seriously if you don't? If you are cheating, then you are treating it like a "fad" diet. Others see that. And it makes it difficult...
  3. MitziG
    For my son, he had full blown neuropathy by the age of 8.
  4. MitziG
    I shared some of your symptoms. The urinary issues- definitely. I was running to the bathroom 40-50 times a day- doctors kept treating for UTI but nothing helped. I also had the "fullness" in my rectum and a constant feeling of pressure in my pelvis. A urogynecologist dx me with a prolapsed bladder, uterus and rectocele, and I had surgery to repair it. After...
  5. MitziG
    My celiac son developed depression, panic attacks, and peripheral neuropathy by the age of 7. Your doctor is incorrect in his assumption.
  6. MitziG
    I think you have the right idea. Get the full panel done, then go gluten-free anyway. Much easier to do with a young child then a sneaky rebellious teenager!
  7. MitziG
    I would do the endoscopy to TRY to get a dx. It may help him stay committed down the line if he knows cheating is in no way an option. As soon as the endo is done, have him go gluten-free. Hopefully he will cooperate! I got a few cluster headaches shortly before my dx. Worst pain of my life. Haven't had any since going gluten-free. As I only had a few...
  8. MitziG
    Seconding what Irish Heart says. A career is important, but so is a marriage, and your life. Your husband should be doing some serious rethinking of HIS priorities in my opinion. If ones mate is suffering from a debilitating disease, surely the military will make some concessions as to assignment?
  9. MitziG
    Well you didn't get a full celiac panel if they only checked endomysial antibodies. They should also do ttg IGA,, ttg IGG, total IGA and Deamidated Gluten Peptides. I would go back to the doctor and insist on the full panel- one test, albeit a specific one, is not enough to rule out Celiac.
  10. MitziG
    No links, just going by what I have read here many times. Obviously, every person is going to be different, and the OP may show damaged villi still. Or they might do the full gluten challenge and still come up negative. I tend to error on the side of caution. If someone is going to have the procedure done, best to give it the best chance of showing up!
  11. MitziG
    I had undx celiac for 30+ years. My blood tests were a weak psotive. Endoscopy showed many years of damage, total villous atrophy. My daughter (12) had high blood tests, but not as much damage to villi (though still positive) My son (7) had very high antibodies, total villous atrophy. I have a THEORY that because my immune system was so wore out...
  12. MitziG
    Very common. The skinny celiac kid in the medical books is more of a rarity these days. Be very insistent on getting the full celiac panel- ttg IGA and ttg IGG, total IGA, deamidated gluten peptides and endomysial antibodies. Most docs don't even know which tests to order and only order 1 or 2 of the older ones. Beware there is a high rate of false negatives...
  13. MitziG
    Well, it seems clear that you can't do a gluten challenge. The above poster is correct, if you test NOW, there is a chance it can be positive. Depending on how high your antibodies were to begin with will make the difference. Some people will have elevated antibodies a year after going gluten free,m others may be at zero a few weeks after stopping gluten...
  14. MitziG
    Good for you for being your own dr! So many of us here can relate to your story- years and years of missed diagnosis and MISdiagnosis! It sounds like you are definitely on the right track, so don't give up!
  15. MitziG
    Ah yes. I too was a donut junkie. As in 3 every day! Occasionally I still fantasize about the cream filled long johns I used to so enjoy... What I can tell you is that the cravings do diminish. I seldom think of donuts now except when I smell them or see them. And gluten free donuts do nothing to fill the void. Tho I am sure there are good recipes- I just...
  16. MitziG
    Braggs apple cider vinegar. A tsp in a glass of water does wonders for the stomach pain- works within seconds! Take as often as needed. The rest, well..it will pass. Hang in there, we have all been there! It gets better!
  17. MitziG
    Yeah, you are likely to get a false negative now. It takes 3-4 months of heavy gluten consumption to show the damage- even then it is iffy. Did you have positive bloodwork already? Combined with your obvious symptoms, you really don't need a confirming biopsy, unless your dr insists and you feel you need his word for a diagnosis. This is why many people...
  18. MitziG
    You sure sound like a celiac tto me! Don't be surprised if your dr doesn't agree though- they just aren't that knowledgeable about it! I don't know how it works in Australia- but here in America, we can insist on what tests our drs perform (though drs don't always go along willingly, but if you are pushy enough, they will do it) since you have govt funded...
  19. MitziG
    You didn't post the normal ranges, but I am guessing what he saw is IGA deficiency. Most of the IGA labs I have seen have above 200 as normal- your reading of 124 would be low- IF THOSE ARE THE RANGES. IGA deficiency is a common "red flag" for celiac. It also would render your other IGA tests invalid.
  20. MitziG
    Also,m I didn't really clarify...if you DO go gluten free now, but later want the testing- you will have to go back to eating large quantities of gluten for 3-4 months before you can get tested. And it still may be negative. And you will have been miserably ill for the 3 or 4 months of your "gluten challenge" which is why most people give up before then and...
  21. MitziG
    9 months?!! Where do you live??!! I think it is pretty obvious that you need to be gluten free. Only testing can say for sure that you have celiac disease- but it can't tell you that you DON'T have it. It just isn't reliable enough to catch all of the cases yet. Gluten intolerance is very common, just as serious as celiac, and can not be tested...
  22. MitziG
    Well, I am 5' 10" (used to be 5' 11" but got squished by a horse and fused two vertebrae) so growth is not necessarily the big clue! (Tho I was short until high school, go figure) As for gluten intolerance, I think it some cases the symptoms are more pronounced than celiac. Celiac just gets the recognition of being a "disease" Oooo. Scary.... ...
  23. MitziG
    Oh, forgot to add, before dx, my son was peeing literally every 10 minutes. He also complained about numbness and tingling in his feet. I suspected diabetes and had him checked- he was borderline high, but dr blew it off. After going gluten-free, not only did the peeing stop, the numbness went away and his blood sugar dropped from 103 to 79!
  24. MitziG
    Eye opening it is! Your kids' symptoms are very typical of celiac kids! The whole "growing pains" garbage that doctors spout off- growing DOESN'T hurt! Get the kids tested pronto, and after testing, ditch the gluten! If you can get a dx for them, great. It will help with staying committed to the diet and not giving in to occasional "cheats." If you have celiac...
  25. MitziG
    You have it. It is like being "a little bit pregnant" There are different factors that can influence the outcome of the test, and some celiacs show no antibodies on the test but their biopsies show damage. I myself was a weak positive of 6, with levels below 4 being normal. This after 30 years of being sick with celiac and undiagnosed. When...
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