PA Painter

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. 

8 hours ago, knitty kitty said:

 

Which foods do you react to?  How do you react?

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 free" food cause a violent reaction. Believe it or not. I can eat 3 Tostitos any more than that ruins my next three days.

I did have one of the genes for potential autoimmune problems but they said it could mean anything. The most I get in the stomach is acid reflux and hot snakes. My intestinal symptoms are minimal. I think the pathology is different in way yet similar in others.

These were certified gluten free. I have a list of about 12 or so foods that do this.

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.

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. My nerves can finally repair  without the threat of inflaming over and over any more. The cognitive symptoms I have experienced are frightening to say the least. This is totally reproducible with food that has residual wheat on it much less actually eat wheat directly. They don't even know if this is caused by gluten. My reaction is innate only. I get barely any stomach problems, only hot snakes and acid reflux. I think this may be a direct cause of long term GMO sheet IDK. I can't touch it and am not celiac. I wish I had a forum.😞

Thank you for being so informative. Hopefully we get some good research soon. The NIH should be all over this, among other things.

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.

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 protien set off neuropathy so bad. He referred me to some nerve test. I am so sensitive that "gluten free" frozen diners give me tension headaches. I have been 100% vigilant on this ridiculous diet because of the incredible headaches, joint aches, brain fog etc. I love spaghetti. This is crazy my doc doesn't care that 20% of my life has been literal misery. If I go have a slice of pizza I will have to take off work, yet nothing is wrong with me accordi g to this guy what the heck?

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 but I am feeling better and better each day again. Giving up coffee is so difficult. 

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, and I didn't know how to make it stop. It was/is a miserable existence. The main symptom was always mind bending migraines. There is not an opiate on Earth that can touch this headache. The pain can be dulled slightly with heavy pain meds but proves pointless ultimately. The only relief I could find was in a hot shower. I lived in the shower many days. This is after tired of being told by doctors to take Sudafed to alleviate my "sinus headaches". lol...

This progressed until I started getting GERD which was manageable with prilosec but continued having random reactions with headaches and the eventually extreme arthritis. 

The GERD progressed to the point of breaking through the prilosec treatment. I continued on like this for some time and now have problems swallowing due to waiting so long to address it. Everything I ate gave me violent acid reflux. Out of desperation I gave up gluten. I did not expect the gluten to be my problem. I noticed major relief on day two. I continued to refine my diet and found many things that directly affected my arthritis and headaches. I have eliminated a lot of food that does bad things to me. I have not been fully diagnosed because I had gluten eliminated before going to the doctor and; therefore, do not have gluten antibodies. I do have one of the genes that indicates celiac. I am having a clonoscopy/endoscopy Friday. In a way I am upset for not being able to ID this issue sooner. I feel like damage has been done. In another way, I am so relieved because now I can finally start to recover from whatever IT is.

Coffee zaps the CRAP out of me, At times it directly caused major neuropathy pain in both middle toes on both feet and both pinky fingers. It doesn't take long to kick in. I know it is the coffee. This never happened until 8-10 weeks after eliminating gluten. It was an excruciating burning and stabbing pain in the middle of the knuckle joints. IDK if it's the coffee or caffeine. This effect seems to be waning the longer I stay gluten free. I regrettably continued to drink coffee factoring other possibilities out first. Ultimately after eliminating coffee the neuropathy pain stopped almost completely in one day with very mild discomfort since.

With all of this, it is difficult not to speculate. I have a endoscopy/clonoscopy tomorrow. 

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 monitor whether it creates a reaction

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.

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. I have been confused quite a bit along the way. This site helps.

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. 

That's worth looking into.  Thanks! I hope that's not it. I go through a lot of oat milk. The only thing new was my instant coffee. I switched to NesCafe's "Iced" version. It's supposed to dissolve easier so I would assume that it has been processed more than the regular instant coffee.

6 minutes ago, Jackie.C said:

From the problems I’ve had, I am now eating what was suggested by the 2 prior replies.  Try eating items, if only a small amount (since it’s hard for you now) that have good fat, nutrients vitamins etc. I was relying on packaged gluten-free foods. Good luck.

 I have an endoscopy coming up. I discovered that I had celiac after sustaining some pretty nasty damage from GERD. I only ever got GERD and neurological symptoms. The prepackaged meals trigger me too unfortunately. 

I am getting the rollar coaster ride too! I don't eat anything that should have gluten but I still get, neuropathy, joint pain, headaches, cramps and twitches. It has gotten to the point where all I eat it is grilled chicken and mixed veggies every day for diner. This morning all I had was an oat milk/ isolate whey/ instant coffee/ smoothie and I could hardly get through the day. I have yet to eat anything else so I know it is from the smoothie. Nothing in the ingredients indicates I should be feeling like this. I keep getting what seem to be reactions without ingesting gluten. I had to completely eliminate the "gluten free" junk food. It was messing me up almost as bad.

I wish. I can hardly eat.

Thank you!

Thank you for the reply. In a way I am relieved to finally know what is going on with the arthritis etc, but am a little freaked about all of the potential problems that could spawn from this. I have had family tell me I'm crazy which is BS. I appreciate the heads up on gene testing. I'd rather not eat gluten ever again

I'm new too. I'm still only 6 weeks into my first gluten free attempt. My Mother just feed me cornbread and insisted it was gluten free. After I ate I checked and sure enough it was made with wheat flower. I'm not taking it personal but I will be preparing my own meals from here on out because I already feel better than I have in 20 years.

I have been experiencing extreme , GERD, lactose intolerance, arthritis, weird rashes, constant itchy skin for well over 10 years. I thought it was post traumatic arthritis. 3 months ago the GERD had gotten to where I could not swallow properly and was in constant burning agnony. None of the over the counter treatments worked. Out of desperation I tried a gluten free diet and now have almost zero arthritis pain and I feel SO SO much better. It is unbelievable! I will gladly never eat gluten again. I am afraid to find out how much damage has been done. I just recently started an insurance plan with Capital Blue Cross and will be seeing a doctor asap. I hope I am not asked to eat gluten again to test. I am deathly afraid of it now.