PA Painter
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Yes, excessive neuropathy and a debilitating headache, spasms, cramps, tremors. Very much what you would expect from Parkinson or MS, only it coincides with the food and resolves 100% with a whole food AND gluten free diet. The gluten free diet was not enough on it's own I had to eliminate all processed food as well. They did the biopsy a year ago.
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I've had the testing up to the biopsy. Once they confirm the intestine is not affected they cease pursuing further diagnosis, regardless of extra intestinal symptoms. They refuse to pursue anything non celiac. I react to: banana, avacado, fresh cabbage, yogurt, pecans, walnuts, xantham gum, and obviously wheat, barley, etc. Even so called "gluten...
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These were certified gluten free. I have a list of about 12 or so foods that do this.
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I have non celiac sensitivity. I used to eat oatmeal with no problem. It causes a three day nightmare just as if it were wheat now. I seem to be an extremely sensitive case though.
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NCGS Diagnosis
PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
That somes it up. It is worth mentioning GliadinX does not reduce symptoms for me at all. I also react to banana, avacado, cabbage, Oatmeal, and pecans among other things. If anyone else out there is like me, I had to eliminate gluten and all processed food before I could start to heal. I wish I had know this a long time ago. Thanks for the acknowledgement... -
Hi Celiac has been ruled out with a biopsy. I am so sensitive that I cannot eat most processed food. One bite sends me into three to five days of a disabling shoulder, neck, headache, stabbing & burning toes, ankles, knuckles, and wrists. I finally discovered that a whole food and gluten free approach has given much needed relief after years of agony...
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Trying to be patient
PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Thank you for being so informative. Hopefully we get some good research soon. The NIH should be all over this, among other things. -
Scott Adams reacted to a post in a topic:
Trying to be patient
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Trying to be patient
PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Right now the only symptom I have is peripheral neuropathy and extreme fatigue. I am on an extra vigilant no bs chicken and veggies diet and feel fantastic except I can get enough sleep have stabbing/burning pains in my feet/toes. My doctor said it's impossible to have neuropathy from NCGS. He is an intern. -
Trying to be patient
PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
They said no celiac. I still can't eat gluten it messes me up. I am having severe neuropathy. I tried whey protein isolate again after the results and got a nasty neuropathy flare that is now on day 5 from a fourth of a serving. My doctor refuses to acknowledge gluten sensitivity or it's symptoms. He asserts that I am healthy. I don't understand why whey... -
Scott Adams reacted to a post in a topic:
Trying to be patient
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Trying to be patient
PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
The endoscopy was due to the GERD. They said my esophagus is eroded, my stomach is fine, no polyps, and 6 sample were taken from my colon for celiac biopsy. I had reached a plateau and would not get batter despite being gluten free. I had to give up dairy and begrudgingly coffee. The coffee was messing my nerves up seriously bad. It has been quite an adjustment... -
Hello everyone! Reading some experiences here has been so helpful I feel responsible to share my own so far. I am pretty sure I have been having mild gluten and food related reactions my whole life. I could never figure out what was happening, didn't know what they were, didn't know what caused them, didn't know why I sporadically felt like poop for 3-5 days...
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Blue Roan reacted to a post in a topic:
Weird Limb Sensations
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Weird Limb Sensations
PA Painter replied to Blue Roan's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I was continuing to get a reaction from processed food. I had to change to nothing but one ingredient foods like chicken and vegetables. I am still working it out. I glutened myself with instant coffee believe it or not. After going to the elimination diet all weird sensations have eased off, until I glutened myself. The idea is to slow introduce foods to... -
Weird Limb Sensations
PA Painter replied to Blue Roan's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I get ill feelings from pretty much all of the processed "gluten free" food. The frozen diners are a big no go. The cookies are good but they get me sick too. -
Weird Limb Sensations
PA Painter replied to Blue Roan's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I'm on some what of an elimination diet right now. Yesterday I introduced a new instant coffee to my morning smoothie that lit me up. I am still hurting now but it's ebbing off. The brain fog, stiff shoulders, etc. All from 2 scoops of instant coffee in my smoothie. I switched back to Cafe Bostello this morning and no issues. This thing is hard to nail down... -
Weird Limb Sensations
PA Painter replied to Blue Roan's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Yes, I just glutened myself yesterday. My two middle toes and two pinky fingers are always burning with neuropathy. It is a horrible pain. I feel red hot spikes right now. NSAIDs don't hold a flame to nerve damage pain. It just started for me. I have upcoming procedures.