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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    What she said but there are false negatives with blood testing even with a normal total IGA. When you are done with all testing give the diet a shot.
  2. ravenwoodglass
    Did they say your brain was insignificant or that the findings were insignificant? The reason I ask is because I have gluten ataxia and other brain impact. On the MRI they found what the doctor called UBOs. Unidentified bright objects. These were something the neuro said were meaningless but in reality through my research years later I found out they are...
  3. ravenwoodglass
    Many of us become more sensitive to CC after we have been gluten free for a short while. You may have hit the nail of the head with that thought. What are you eating? Have you made your home gluten free? Are you baking gluten items for your family even though you are not eating them? Have you checked all supplements and any OTC or script drugs for gluten...
  4. ravenwoodglass
    I hope things work out for you this time. One thing you may want to pick up is a book that deals with the glycemic index of foods. That may help him with his food choices for meals and may help the diabetes. A consultation with a diabetic educator and dietian may help with that also. Be forwarned that some know nothing about the gluten-free diet. Going gluten...
  5. ravenwoodglass
    I saw that today in a article about the 5 unhealthiest new restaurant offerings. It has more calories in that one sandwich than I eat in a whole day!!!! Another in that same article was a huge hamburger with 2!!!! grilled cheese sandwiches instead of a bun. Pity to think there may be people seeing that article and rushing to the restaurants to actually order...
  6. ravenwoodglass
    Enterolab does not technically diagnose celiac. But they can tell you if he is producing antibodies to gluten. We don't produce antibodies to stuff our body want to have in it.
  7. ravenwoodglass
    Glad you both got definate diagnosis. If the doctor could see the damage even without a biopsy you are certainly in the right place. You do not have to be chip, cereal, candy, pizza and bread free forever you just have to find ones you like that are gluten free. For at least the first month or two do follow the doctors advice and go with fresh unprocessed...
  8. ravenwoodglass
    Can you get pans for your own use only? Also if the family bakes with wheat flour that remains airborne for up to 24 hours and can cause issues for us.
  9. ravenwoodglass
    Welcome to the board. Please make sure you keep eating gluten during your testing. If you go gluten free or gluten light before the testing is done you will have a false negative. There is up to a 20 to 30% chance of a false negative even on a full gluten diet. I hope you get accurate test results as it does sound like you are in the right place. Do be aware...
  10. ravenwoodglass
    Check with their website. You can order just the stool panel for gluten, I think. I had a full workup but without the gluten test, I had been diagnosed for 5 years at that point but the tests including gene panels were around $300. Just the stool test would be a lot less. I would also consider calling them and explaining your financial situation and the...
  11. ravenwoodglass
    What you are describing is likely gluten ataxia. What are you eating and drinking? I suspect gluten is slipping in somewhere. I have ataxia and I have to be superstrict. I avoid gluten ingredients in toiletries and have to avoid it in distilled gluten products also like vodka, whiskey and gluten grain vinegars. If you really like pickles and live near a Wegmans...
  12. ravenwoodglass
    Is your ped one who thinks that celiac can be outgrown? Some do still think so although we now know that isn't the case. We do not 'outgrow' celiac although it can take awhile for the symptoms to become a factor again. Meanwhile the antibodies can attact pretty much any organ they choose including the brain. IMHO putting him back on gluten was a big mistake...
  13. ravenwoodglass
    Iodine only cause flares while the antibodies are still present in the skin layers. Once you have been breakout free for a time it can and should be added back in as iodine is an important nutrient.
  14. ravenwoodglass
    Yea mine were clueless also. I had it misdiagnosed as 'poison ivy in my bloodstream' as a child and as an adult was told it was either 'pickers acne' or atopic dermatitis. Atopic dermatitis is basically the same sort of diagnosis as IBS. I think they are just not taught about it in school and also medicine has gotten so 'specialized' that doctors fail to...
  15. ravenwoodglass
    Have you considered having him tested with Enterolab? I know they don't diagnose celiac but they can tell you if he is making antibodies and you could take him off gluten for up to year and the antibodies can still be found.
  16. ravenwoodglass
    As long as they test for more than just DQ2 or DQ8. Many doctors only test for those 2 celiac associated genes and research is showing many, many more are associated. The last article I read stated they had now found 27. Gene testing can be part of the diagnostic process but it is not definative for diagnosis. If you do gene testing it would be a good idea...
  17. ravenwoodglass
    You are doing the right things. You have only been gluten free for a month and it can take some time to heal. We can also have withdrawls from gluten so you may have a bit of that going on also. I don't see any protein in your diet, what are you eating for protein? If you are a vegetarian beans and nut butters added to your rice would be a good idea. If not...
  18. ravenwoodglass
    The problem with this research is that the same area that produces the intrinsic factor is the area that is damaged in us before we have healed. I do agree that once we have healed a regular supplement is fine but while we still have villi damage the regular pills are not going to be absorbed. I also agree and have read research that our levels can be too...
  19. ravenwoodglass
    I don't know if it is the same stuff but at my local grocery store in the Imported food section that has food made in England they have a Heinz tomato soup that is gluten free. I haven't had it in a while though. Is there a phone number or website on the can? If there is I would call and check it.
  20. ravenwoodglass
    All I can refer to is my own experience but after I went gluten free I started to have bleeding for about 3 days after my GI reaction hits if I get a good amount of gluten. It usually takes a couple of days for the GI reaction to hit me and others also can have a delay in those symptoms. I also will pee pink for a week or so. Oddly enough before I went gluten...
  21. ravenwoodglass
    Yea I really liked Progresso soups until I couldn't have soy any longer. Now if they would just make some without soy..... Grandma Brown make a couple gluten-free/SF soups. Now if I really crave soup I get their Split Pea or Bean.
  22. ravenwoodglass
    There are some companies that just don't use gluten ingredients. Call the companies whose names you got and make sure that they have that policy. If not then if you take generics have the pharmacey call at each refill as binders can change.
  23. ravenwoodglass
    Do you take a vitamin with folate? That can cause the B12 levels to read higher than what they really are.
  24. ravenwoodglass
    What are you guys eating? You should be going with whole unprocessed foods as much as you can. It is also not unusual for us to have other intolerances. The most common are soy and dairy. Also make sure you are doing all you need to in your home to prevent cross contamination. It can take a while to heal but after a year you should be well on your way. Make...
  25. ravenwoodglass
    Did your doctor test your total IGA? If that is low that would cause a false negative on the IGA testing. With a firmly diagnosed first degree relative I would forgo the biopsy and just get on the diet. The biopsy does have a chance of a false negative also so it may not give you a correct answer. If you are going to want to biopsy then keep eating gluten...
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