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dilettantesteph

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Everything posted by dilettantesteph

  1. dilettantesteph
    Same thing happened to me.
  2. dilettantesteph
    It took me awhile. My problems seem to be best solved with diet. I was extremely sensitive to gluten cross contamination from the start. It took me a long while to figure out what was going on and what to avoid. I kept getting told that 20 ppm was safe for everyone and I just needed to heal. I found out that some of us are sensitive to lower levels than...
  3. dilettantesteph
    What are you eating? Maybe something will jump out at someone.
  4. dilettantesteph
    It can be difficult to get people to take this seriously. Some will believe that it isn't real no matter what you do. I find the best doctors that I can to stand behind my children and I. It helps to find out what medical documentation can be provided, and have the doctor do that. It helps to find peer reviewed published research and to provide that to...
  5. dilettantesteph
    You should see your gynocologist. It might be something unrelated and serious.
  6. dilettantesteph
    You have my profound sympathy. I know all too well what this is like. There have been many times when I can't make it the 12 steps from this computer to the toilet. I don't get enough warning to know it is coming. It is so liquidy that when it comes out as I am hurrying to get there in time that it runs down my legs through my pants and I leave messes...
  7. dilettantesteph
    Good question. Do you have any reason to suspect celiac disease despite the negative tests? Does it run in the family? Is there any correlation between symptoms and gluten ingestion?
  8. dilettantesteph
    It is. My mind was shot when I got my diagnosis. I was a research chemist (PhD level) and I was able to go back to work as a synthetic chemist developing new procedures. I was able to read and understand research journal articles again. When I was sick I wasn't even able to read the newspaper. The change is unbelieveable and wonderful.
  9. dilettantesteph
    Cuddling up in bed with a hot water bottle on the stomach helps me. The behavioural issues are difficult. It helps to understand their origin. You can then tell yourself that so and so isn't really trying to be so irritating, it just seems that way because of the glutening. This is hard for a 6 year old. For now, there will be much need for patience...
  10. dilettantesteph
    From what I understand, celiac testing is not very accurate with young children. The test was negative so the doctor looked for other causes. The changes you made seem to have resolved the problem. That is really all you can do for now. If problems return, you can take him back to the doctor and he may decide to run another celiac panel. Do you have...
  11. dilettantesteph
    I agree that trial and error is a hard way to try to find out if you can drink something. Super sensitivity is a pain. I guess that's why I don't have a wine that I can drink. I am currently drinking an apple vodka. Not right now though, it's 10 a.m. LOL
  12. dilettantesteph
    Congratulations on feeling better and being able to figure it out while suffering from such brain fog. I have a suggestion for nuts. Both my son and I have problems with most nuts but we can eat macadamia nuts purchased in the shell. You have to buy a special nut cracker so trying them would cost a bit, but may be worth it. Also for eggs. We can't eat...
  13. dilettantesteph
    I think that when there are a whole bunch of food intolerances, there is likely something else going on. Have you been working with a doctor? Do you keep a food diary? There are many possibilities. In my case, I found that I could eat certain foods from my garden but not from certain other sources. I'm not sure what the common thread is, but I'm working...
  14. dilettantesteph
    I've read about tests being developed which don't require a gluten challenge. One day we will be able to get a diagnosis without having to suffer a complete relapse.
  15. dilettantesteph
    You can make some restaurant type meals at home. Every once in awhile, buy some special items to cook with and make an event out of it. You can invite special people etc. If you can trust someone to cook for you at home, have them do a restaurant type event for you. With all the money you are saving on restaurants, you should be able to get lots of special...
  16. dilettantesteph
    In your shoes I would travel to the closest celiac center and get an expert opinion. I also suggest trying the diet in the Hollon Fasano study. Open Original Shared Link Some react to lower contamination levels than others. Do you still eat a lot of boxed items? I have no idea if that would cause a B12 problem. It is produced by bacteria. Could...
  17. dilettantesteph
    Yes, this burping can be relieved by the gluten-free diet. My son and I both get this symptom. Before diagnosis, I remember lying in bed having problems with this burping. I'd try elevating my head, not eating spices etc. My husband would tell me that it was because I was swallowing air. I'd be miserable with all the burping and he'd be yelling at me...
  18. dilettantesteph
    I think that this is a common scenario. You find out about celiac disease and realize, that is probably why you have been having uncontrollable diarrhea for the past 15 years that you doctor said was IBS. You go to the doctor with this information and he won't test you for celiac disease. Your health insurance won't pay for you to go to another doctor...
  19. dilettantesteph
    Vomiting was one of my son's most common symptoms of glutening upon diagnosis. It still happens with accidental exposure 12-48 hours afterwards.
  20. dilettantesteph
    When I tried to look at the meeting transcript I was told that I didn't have permission.
  21. dilettantesteph
    My undiagnosed at that time celiac son's poo was very loose such that the diaper couldn't contain it. We had to stop leaving him with the baby sitter because she wouldn't clean it up enough. She said that we would need to give him a bath and left him dirty. It was normal for us, but clearly not for her other clients. At that point I had never heard of...
  22. dilettantesteph
    I had the magic one and it broke so I got this one. I hope it is more sturdy. They are very convenient.
  23. dilettantesteph
    You are right Gemini. Correlation does not equal causation.
  24. dilettantesteph
    I am having a hard time understanding what a possible sensible reason for doing a parasite cleanse could be. Open Original Shared Link Open Original Shared Link Open Original Shared Link I think that unregulated materials involved in such a cleanse could pose a problem for a super sensitive celiac.
  25. dilettantesteph
    Learning to deal with condition can be like getting a master's degree. Do you eat gluten-free foods? They can contain no more than 20 ppm gluten to be labelled gluten free. This study was used to determine that was safe: Open Original Shared Link Reading it, you see that one study participant out of the 26 celiacs tested, suffered a clinical relapse...
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