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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Have they done any stool testing? That would be one thing I would ask about. Whether you have something going on with your pancreas I can't answer that but I would ask the doctor about it. Hopefully others will be on soon with some more ideas for you.
  2. ravenwoodglass
    Have you checked the green's mix to be absolutely sure it is free of any form of wheat or barley? It is not unusual for some of these to have wheat grass or barley or perhaps even wheat germ oil for the source of Vitamin E and some companies considered the grasses and oils to be gluten-free.
  3. ravenwoodglass
    C-diff is not something I know a great deal about but I do know that it is hard to get rid of and sometimes needs repeat courses of treatment. Have you had another stool culture done to check if the antibiotic helped? Are you taking any probiotics or eating live culture yogurt or saurkraut on a regular basis. They can help repopulate the gut with the good...
  4. ravenwoodglass
    I am glad this has helped you as dramatically as it helped me. One thing I have learned in the last 6 years is that there are some amazingly good mixes and recipes available for us. We have a recipe section here that you should show her. I'll bet before long she'll making yummy chocolate chip cookies that you won't have to just walk by. The only problem...
  5. ravenwoodglass
    Have they rerun your celiac panels or done a repeat endoscopy to check if you are healing? It is also not uncommon for us to have other intolerances. Have you tried eliminating the most likely ones - dairy, soy and eggs? How much processed foods do you eat? Or foods processed in the same facility as wheat products? How gluten free is your home? If it...
  6. ravenwoodglass
    My best guess would be the cheese puffs. There are many here who don't touch Lay's products because of the strong risk of CC. Eating Lay's is like playing roulette, at least for me. Stomach growling is one of the first indications that I have been glutened.
  7. ravenwoodglass
    Thanks for posting this. I have been avoiding HFC now since I was told I was diabetic, which I am not. It is in almost everything. I understand it is cheaper than 'real' sugar but like wheat I see no reason why it has to be in so very much of our food. It really wrecks havoc with our systems and I agree completely with the article about it being one of...
  8. ravenwoodglass
    The blood tests will not pick up celiac if you have been gluten-free for that length of time. Did he do the panels before you started the diet? If so then the retest can show how much your numbers have gone down with the diet. Retests are often done to make sure that a person is dietarily compliant or to see if gluten is sneaking in somewhere. But for...
  9. ravenwoodglass
    Just because you don't have the celiac genes that are currently considered the only celiac genes in the US does not mean you can't have celiac. There have recently been 7 more genes associated with celiac that are recognized, at least in other countries. I was thankful I was diagnosed firmily before I did any gene tests. The doctors here would have just...
  10. ravenwoodglass
    What you do now is give the diet a good strict try. I relied on blood tests for years and no doctor ever told me anything about the diet. They just said the tests were negative and I should be happy. I wasn't, I was dieing slowly and painfully. They also never told me there was any possibility of a false negative. Try the diet you have nothing to lose...
  11. ravenwoodglass
    It does sound like it is gluten related which means that it should get better soon. Your right about her being to young to understand the time out yet. All she knows right now is that she doesn't feel good. Some might disagree but I would comfort her as much as you can.
  12. ravenwoodglass

    ARCHIVED Ugh!

    ravenwoodglass replied to Dasmith's topic in Coping with Celiac Disease

    We they ones you roasted yourself? There are companies that use gluten in the processing or flavoring mixes.
  13. ravenwoodglass
    Kinnickinik Italian bread, pizza shells and hamburger and hotdog buns as well as their doughnuts are real high on my list. Gluten free Pantry makes some good mixes, their French Bread mix makes great deep dish pizza dough. I refrigerate it and use a little less liquid than they call for to make it easier to spread. Bakery on Main makes some good granola...
  14. ravenwoodglass
    Your regular physician can do a test for lactose intolerance. I believe it's a breath test of some kind. If you drink a lot of milk and are lactose intolerant it would seem like it would happen on a regular basis not as sporatically as you are saying. I could be wrong about that though. Have you tried keeping a food diary? Some find that helpful. ...
  15. ravenwoodglass
    I'm willing to bet it's 'miracle'. I know I still feel my diagnosis and recovery was.
  16. ravenwoodglass
    Oh gosh yes. I wore my son in a front pack a lot during his first two and a half years of life. It was the only way to get anything done and keep him content. The movement seemed to soothe him also. I would find myself rocking while standing still even years later. When I think of how anxious, depressed and irritable I get when under the influence it...
  17. ravenwoodglass
    I think you were asking me and referring to my signature. So I'll answer. No one knows for sure why his liver was attacked. The doctor said after the autopsy that it was likely selfdestructing since birth. There is a correlation between liver issues and celiac but he passed long before he could be tested. He had a lot of the issues I had but didn't...
  18. ravenwoodglass
    If you give up gluten before you get tested for celiac you run the risk of a false negative. This is a possiblilty even if you are on a full gluten diet so you need to be sure you are consuming a full gluten diet before testing. If your blood panels show up positive, even a low positive, and you are going to agree to an intestinal biopsy then you need to...
  19. ravenwoodglass
    Questions: What is PF restaurant? This is PF Changs which is one of the only restaurants I will eat food from. If you have one in your area do give it a try. What lotions, shampoos, etc do you use on a regular basis that is gluten-free? Suave and Dove will label gluten ingredients for one example. My personal favorite is from NutriBiotic. It...
  20. ravenwoodglass
    The best way to determine whether this is DH or not is the biopsy. It is a simple procedure where they take a small amount of the tissue next to the lesions. They then look for the antibodies in that tissue. It is not a painful procedure and the doctor will numb the area. If you suspect that the rash is DH you really should at least consider the biopsy...
  21. ravenwoodglass
    Protecting the kids is the prime objective. If the tests are positive and she can not be easily brought on board by talking to the doctor then perhaps a mention of CPS might bring her around. If a child has a medical condition that a parent ignores that could be considered neglect or abuse.
  22. ravenwoodglass
    Gentleheart, Thanks so much for the update and the time and energy you have spent on this.
  23. ravenwoodglass
    The answer as to how to test them is simple, have Dad take them in to the doctors and tell them of his diagnosis and that he wants them tested. It might even be possible for him to simply call the peds office and the doctor could call in a lab slip. Now if they are positive then Mom would have to be gotten on board. Hopefully that wouldn't be too difficult...
  24. ravenwoodglass
    I often didn't even make it the end of my meal before I had to go. Did they do a celiac panel on you or a biopsy? What were the results if they did? It can take a while to get the hang of the gluten free lifestyle and all that goes with it. How long have you been gluten free?
  25. ravenwoodglass
    If you don't have medical insurance check with your local social services as soon as you can. You may qualify for medical assistance and you don't have to apply for total services in some cases you can just apply for Medicaid. there are also real low cost insurance plans available through some states so check it out. Have you checked all your scripts...
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