This year I lost control on my whole life

[GabrielReitano]

Hi! My name Is Gabriel. I am Argentinian AND new to the forum. Sorry for my rusty english in Advance! I want to share my case because I REALLY need other opinions to tell me if all I have been through this year can be due to gluten. It has been a nightmare AND doctors have given up on me.

Everything started around November 2020. I was REALLY training hard during 2020 AND by the end of the year I started feeling like I was losing strenght to do very familiar exercises. The next symphtom was fear during nights. Extreme fear. I was sleeping in fetal position most of the Time.

But the worst started in 2021. I began feeling like I was always thinking how to walk because my balance was off. Some days later, after a long drive, I arrived home with both legs AND low back burning really bad. I was on fire. I tried to exercise AND drive again a few times with the same result. Over the course of one month, i was totally bedridden, unable to do simple things at home. I could barely stand up for a minute. 

I went through five traumatologists AND mri scans of my legs, low back AND hips which were totally normal. So were my blood tests. Only my D vitamin was low. According to doctors, all was on my head.

Then a kidney Stone tortured me one morning. It finally passed AND my doctors said there was nothing to worry about.

I started physical therapy around july 2021 AND my progress was soooo slow. That began to change when I implemented a gluten free diet one month ago. I dont feel 100%, not near. But i can walk one hour a day AND do my housework again. At least I am not bedridden anymore.

Can all of this have been due to gluten? My doubts came when I realised that i changed my diet in 2020 introducing oats for breakfast AND mid afternoon snack AND having pizza to cheat every weekend. AND if It Is due to gluten, does nerve pain ever dissapear? Because although I am feeling better, i lose hope some days that weird feelings in my legs Will ever go away 😔

I want to thank you all in Advance for your opinions AND support. This forum has been an invaluable help for me!

[trents]

Welcome to the forum GarbrielReita!

We do know that celiac disease has neurological manifestations for some people. This is not at all uncommon.

The fact that when you began to eliminate gluten from your diet there was some improvement does point to a problem with gluten.

Your next step needs to be to get tested for celiac disease. The first stage of testing involves looking for antibodies in the blood. It involves a blood draw and having that blood draw sent off to a lab for testing. Here is an outline for the tests that can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ The most important single test to have run is the tTG-IGA but ask your doctor to run a "full" celiac panel in case your immune system is responding atypically. This is important so please note this: Leading up to the test you should be eating regular amounts of gluten for 6-8 weeks in order for the test to be valid. That is defined as the equivalent of 2 slices of wheat bread daily.

For future reference, be aware that regular oatmeal is typically cross contaminated with wheat. However, you can buy pure, "gluten-free" oats. If you have celiac disease (or even non celiac gluten sensitivity, "NCGS") you would need to totally eliminate gluten from your diet, not just reduce the amount.

Your doctors should be aware that not all people with celiac disease or NCGS have gastrointestinal symptoms. That is a common misconception.

There is a second stage of testing involving an endoscopy and biopsy of the small bowel lining to look for the damage to the small bowel lining typically caused by celiac disease. This is considered the diagnostic "gold standard." But it may not be necessary if you blood antibodies are strongly positive.

Edited November 20, 2021 by trents

[GabrielReitano]

2 hours ago, trents said:

Welcome to the forum GarbrielReita!

We do know that celiac disease has neurological manifestations for some people. This is not at all uncommon.

The fact that when you began to eliminate gluten from your diet there was some improvement does point to a problem with gluten.

Your next step needs to be to get tested for celiac disease. The first stage of testing involves looking for antibodies in the blood. It involves a blood draw and having that blood draw sent off to a lab for testing. Here is an outline for the tests that can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ The most important single test to have run is the tTG-IGA but ask your doctor to run a "full" celiac panel in case your immune system is responding atypically. This is important so please note this: Leading up to the test you should be eating regular amounts of gluten for 6-8 weeks in order for the test to be valid. That is defined as the equivalent of 2 slices of wheat bread daily.

For future reference, be aware that regular oatmeal is typically cross contaminated with wheat. However, you can buy pure, "gluten-free" oats. If you have celiac disease (or even non celiac gluten sensitivity, "NCGS") you would need to totally eliminate gluten from your diet, not just reduce the amount.

Your doctors should be aware that not all people with celiac disease or NCGS have gastrointestinal symptoms. That is a common misconception.

There is a second stage of testing involving an endoscopy and biopsy of the small bowel lining to look for the damage to the small bowel lining typically caused by celiac disease. This is considered the diagnostic "gold standard." But it may not be necessary if you blood antibodies are strongly positive.

Thanks too much for the información trents! Very clear! I understand which are the necessary steps to get a diagnosis. However, i am terrified about consuming gluten again. Thats why I have Made an appointment with an allergist to test for gluten sensitivity, with a blood exam that doesnt need me to be consuming gluten. Could that exam be useful? I REALLY dont mind giving up gluten forever. In fact, my diet only consists on meat, greens, pumpkin AND coconut flour. I eliminated all possible allergens because my pain Is worst Also with corn AND dairy.

[trents]

The first thing to realize is that neither celiac disease or NCGS (Non Celiac Gluten Sensitivity) are allergic reactions. Celiac Disease is an autoimmune condition. It engages an entirely different immune system pathway than do allergies. So, allergy testing will not be helpful. Likewise, NCGS is not an allergy. Currently, there are no tests to directly diagnose NCGS, even though many of the symptoms of NCGS are very similar to those of celiac disease. An NCGS diagnosis depends on eliminating celiac disease since there are tests for diagnosing celiac disease. If the blood antibody tests and/or the endoscopy/biopsy are negative but there are celiac like symptoms then it is assumed that the problem is NCGS. NCGS does not damage the lining of the small bowel as does celiac disease. But allergy testing would be of no benefit in either case.

If your symptoms have improved with cutting down on gluten, then it would be reasonable to conclude that gluten is in some way the problem - either celiac disease or NCGS. I can certainly understand why you do not want to go back to eating regular amounts of gluten in order to get an official diagnosis. Whether or not you have celiac disease or NCGS the antidote is the same: total avoidance of gluten for a lifetime. Not just cutting down on gluten but totally eliminating it. This can be a real challenge and requires great diligence. There is a real learning curve involved. It will also present challenges to your social life. It will mean you probably cannot eat at restaurants or fast food places. It will mean you may not be able to accept invitations to other people's houses for a meal unless you bring your own food. You will need to check medications and supplements for gluten.

This may be helpful in getting started on the gluten free lifestyle: 

 

Edited November 20, 2021 by trents