Trying to be patient

[PA Painter]

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. 

[Scott Adams]

How did your tests go? It seems you've been gluten-free for a while now, so hopefully you understand that, just like the blood tests, your endoscopy (if for celiac disease), will likely be negative for celiac disease, because you've been gluten-free for so long. To be screened for celiac disease you would need to be eating gluten daily for weeks, which, given your symptoms, it sounds like you might not want to endure.

[PA Painter]

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. 

[PA Painter]

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?

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

I had gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

[PA Painter]

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.

[Scott Adams]

It is not impossible to get neuropathy as a symptom from having non-celiac gluten sensitivity (NCGS). While celiac disease is more commonly associated with neurological complications such as neuropathy, there is evidence that non-celiac gluten sensitivity can also be linked to similar neurological symptoms.

Studies have reported that some individuals with non-celiac gluten sensitivity experience neurological symptoms, including neuropathy. These symptoms can occur even in the absence of the typical gastrointestinal manifestations of gluten sensitivity. The exact mechanisms are not fully understood, but it is believed that immune-mediated responses to gluten may play a role. Research has shown that patients with NCGS can have elevated levels of certain antibodies and inflammatory markers that might contribute to neurological symptoms.

In clinical practice, some patients with NCGS have reported symptoms such as tingling, numbness, and pain in the extremities, which are indicative of neuropathy. These symptoms often improve when the patients adhere to a gluten-free diet. 

The real issue is that not enough research has been done on NCGS, but here is an example of a study on NCGS which found "In addition, a high prevalence of neuropsychiatric symptoms including headache (54%), anxiety (39%), 'foggy mind' (38%), and arm/leg numbness (32%) were recorded."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053283/

 

 

 

 

 

[PA Painter]

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