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I have been a little absent from the forum for a while but I thought I would let people know what has been going on. Maybe this will encourage someone. I was getting desperate there for a while. I lost so much weight that my family members started saying I looked frail. I could not eat any foods in the moderate salicylate content category. I was extremely dairy intolerant. I couldnt drink out of plastics or eat anything moist that had been in many plastics without my throat swelling and losing my voice. Nevertheless I hung in there and ate that bland diet and started forcing myself to drink plenty of water out of a stainless steel container bought that does not contain a plastic lining. Drinking two liters of filtered water a day I found that my salicylate and acid sensitivites were going away. I can now eat many spices and I tolerate it well. I am not as sensitive to plastics as I was and can even use regular toothpaste instead of baking soda now.

Not everything is perfect though. I find that if I go too much on the side of carbs and sugars I still bloat up. I do not eat red meat that often. Honestly I do not miss it as it is much harder to digest and I have become accustomed to not having a heavy abdomen anymore. I still do not tolerate corn syrup at all and my body does tolerates only occasional and small amounts of corn starch before my lips and tongue go numb and start burning. Corn Syrup gives me extreme brain fog still and I even stutter if I get fructose comatosed by something I ate because they changed the ingredients and put high fructose corn syrup in it. I am still considering getting a test done for potential candida as I have noticed that I seem to thrive on a mostly low carb diet with lean meats and veggies.

All in all, I cannot complain. I feel very blessed that the biggest diet restriction is behind me now and it did not take a year for that to happen. Hello flavor! It is good to be able to love food again.

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Thanks for the hope! I was wondering where Razzle Dazzle was.

Diana

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Lol just in time for Halloween: " I'mmm BAaack!"

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    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
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