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Feeneyja

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Everything posted by Feeneyja

  1. Feeneyja
    Official diagnosis needs an intestinal biopsy. As for the blood work, it depends on what actual tests were run. If it was native anti gliadin antibodies, then it's not specific for celiac disease. It just means you have a immune response to gluten. If it was deamediated gliadin antibodies, that can indicate celiac even without elevated tTG. But an intestinal...
  2. Feeneyja
    You might want to try this resource: Open Original Shared Link
  3. Feeneyja
    As Ennis post confirmed, flavored coffees can contain gluten and many companies share the same line. The statements about shared lines are comepletely voluntary. It is entirely possible that there is cross contamination. Even gluten free foods get recalled periodically. The fact remains that, while many do not react to under 20ppm, there are some...
  4. Feeneyja
    And I believe the OP was just looking for confirmed gluten-free coffee from someone who might have experience. Judgement on the necessity of said request is really not necessary.
  5. Feeneyja
    "Out of the 7 companies I contacted about gluten in the flavored coffees, 3 got back to me saying not to use their products." I want to thank you Ennis for checking this out. It demonstrates a few very important points: - Check it out if you are wondering (I know, who has time??? You just want a recommendation so you can move on). - any time...
  6. Feeneyja

    ARCHIVED Deepak

    Feeneyja replied to Deepak's topic in Dermatitis Herpetiformis

    A terrific blog by fellow celiac and doctor speaks of sulfite intolerance. She found that her intolerance is related to Mast Cell Activation Syndrome. It is worth reading and checking out. Lots of good information that may or may not be relevant, but it's good to look at the whole picture. Post on Sulfite Intolerance: Open Original Shared Link ...
  7. Feeneyja
    Yikes, lots of frustrated folks here! This topic intrigues me because I have heard repeatedly to watch out for hidden gluten in meat. I also have raised chickens (layers and meat birds). So, I looked some things up and thought I would share the resources. I am not relying on blog warnings, but USDA documents. First of all, I glutened my daughter...
  8. Feeneyja
    Just so you know, the test for gliadin IgG and IgA are probably deamidated gliadin. This is important because those are considered very accurate celiac tests. By your IgG levels, it would indicate celiac disease, but would need to be confirmed by biopsy. See below... This is from Mayo Clinic: Positive test results for deamidated gliadin antibodies...
  9. Feeneyja
    Geesh! I am not trying to diagnos. I was just adding to the information. I know that some of the folks here posting on this thread have neurological symptoms. My only point is that this CAN be an issue and that small amounts of cc are a problem particularly in those who have neurological symptoms.
  10. Feeneyja
    I have posted this link elsewhere, but it's worth reading. The neurological affects of gluten are not the same process as involved in celiac disease. Cross reactivity of gliadin peptides with Purkinje epitopes in the cerebellum as well as cross reactivity of gliadin antibodies with sinapsin 1 are what is suspected. I have contacted Dr. Hadjivassilou personally...
  11. Feeneyja
    I can tell you that my daughter, while not diagnosed with celiac disease, also has a similar reaction: burning and tingling of arms and legs (usually right side), pain and heaviness across her back, even temporary loss of vision. Gluten, in addition to celiac disease, does have a neurological affect in some. It is thought that the peptides in gluten cross...
  12. Feeneyja
    This is a nice option for those who are trying to navigate gluten free/grain free and find it difficult to eat out. We have had a terrible time attempting to eat out, suffering from cc just about every time. My daughter is very sensitive and suffers from primarily neurological symptoms (can't use the right side of her body when glutened...can't walk, difficult...
  13. Feeneyja
    This is interesting. Open Original Shared Link
  14. Feeneyja
    Have you been tested for SIBO? Small Intestine Bacterial Overgrowth. Very common in folks with celiac disease, may be what most IBS patients actually suffer from. Associated with everything you have mentioned. My daughter's GI doc at University of Chicago diagnosed it with a hydrogen breath test.
  15. Feeneyja
    It's not just the paddle on the mixer. Ever notice how when you turn it on there is a big "poof" of flour up...into the nooks and crannies above, ready to drop down into anything you make. We had to get a new mixer. My daughter is very sensitive and has primarily neurological symptoms. She looses the use of her right side, nerve pain, numbness, even temporary...
  16. Feeneyja
    No. There is a huge difference between the ways in which someone goes gluten free. There are many diet choices and considerations that affect health. Simply going "gluten free" is not enough information. In the absence of any specific diet information, general "gluten free diet" studies don't really say much and should not be presented as such.
  17. Feeneyja
    I am wondering if the other moms posting here had success finding a doctor? My daughter had another accidental exposure (she made a mistake at a gathering with friends) and lost use of her foot again, had heaviness of her right arm, and minor uncontrollable tremors. Lasted two days. And that was it for me. I have been contacting doctors and sending...
  18. Feeneyja
    Ennis, that's a great response. I have heard it said that genetics loads the gun and environment pulls the trigger. Genetics is not everything and while genetic testing can be very helpful, it also can have adverse affects on our decision making processes. Never get too worked up about the results because there is a lot that goes into the hows and whys of...
  19. Feeneyja
    My daughter experiences primarily neurological symptoms when exposed to gluten. It's a long story, but she had an accidental substantial gluten exposure recently and is now VERY sensitive. We are working out our safety system when going places where there is gluten to mitigate the hazard. But one of the things I have noticed is the change in her pallor/color...
  20. Feeneyja
    I think this site may be useful in finding ataxia specialists for diagnosis and monitoring. Open Original Shared Link
  21. Feeneyja
    Mermaid's Mom, I know, WHY, just why? I have 6 kids. Most of them have absolutely no problems with any food. Not my one daughter. She lost a year of school because of this until we figured it out. It's amazing how well her brain works now! And she has no pain walking anymore. She was 8 and seemed doomed to no longer run and play because of chronic pain...
  22. Feeneyja
    Just a note about grain free - we ended up going grain free for my daughter this year to treat SIBO. Absolutely necessary. I have also wondered/been concerned about how gluten free all of these gluten free foods and grains are. 20 ppm several times a day adds up. Cross contamination is a problem. Even Bob's Red Mill recalls their gluten-free flours periodically...
  23. Feeneyja
    Thank you everyone for the responses. Yes, it is definitely gluten related. We noticed the symptoms also came and went when we undwent a gluten challenge for celiac testing. We cut out gluten to see if it would help her bloating and we're amazed when mystery neurological symptoms disappeared then were shocked with the violent reaction with reintroduction...
  24. Feeneyja
    I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence...
  25. Feeneyja
    Her GI doctor ordered the test. It's a hydrogen breath test. We do not produce hydrogen, but bacteria do. And bacteria do not belong in your small intestines. At least, not many of them. The test is simple. You eat a diet devoid of fruits, veggies and most grains for a day, then fast. You drink a special sugar drink then breath into collection tubes every...
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