21 years old, diagnosed with non celiac gluten sensitivity

[Morsicato Francese]

Hi! I am 21 years old male. 

My story is, in late 2018 I started having issues with anxiety and depression. This remained stable till in late 2020 I started having gut problems. In early 2021, January 3rd to be exact I suddenly started noticing SEVERE fatigue and feeling not myself at all. This progressed to intense anxiety and depression and eventually obvious neurological symptoms. Including VERY mild ataxia, and general numbness. I have lived with this for only 2 years. I now have realized gluten as the culprit thanks to s functional.medicine doctor. I have avoided gluten for a month and seen some mild improvement. But I now I suspect I am still affected by foods that mimic gluten like corn. So I plan to do a full elimination diet to avoid all grains. I will bring this up with my doctor tomorrow. He constantly assures me of a good prognosis but I am crippled with doubt and fear because I don't want to live the rest of my life like this.

My question is, after just 2 years of symptoms and a my age....should I end up OK? I am really, really scared, I love sports and want to regain my full strength and athleticism. I am also very scared by the brain fog and slight memory problems. I want to clarify my ataxia never got to a point where I couldn't walk or perform motor functions. Just makes it more difficult than it should be. And I have already had some slight improvement in proprioception and strength. Should I be scared? Or should I recover fine given I only have had this 2 years. I have seen encouraging testimonials on here of people who had it far longer and still recovered. 

[Voltage]

5 hours ago, Morsicato Francese said:

Hi! I am 21 years old male. 

My story is, in late 2018 I started having issues with anxiety and depression. This remained stable till in late 2020 I started having gut problems. In early 2021, January 3rd to be exact I suddenly started noticing SEVERE fatigue and feeling not myself at all. This progressed to intense anxiety and depression and eventually obvious neurological symptoms. Including VERY mild ataxia, and general numbness. I have lived with this for only 2 years. I now have realized gluten as the culprit thanks to s functional.medicine doctor. I have avoided gluten for a month and seen some mild improvement. But I now I suspect I am still affected by foods that mimic gluten like corn. So I plan to do a full elimination diet to avoid all grains. I will bring this up with my doctor tomorrow. He constantly assures me of a good prognosis but I am crippled with doubt and fear because I don't want to live the rest of my life like this.

My question is, after just 2 years of symptoms and a my age....should I end up OK? I am really, really scared, I love sports and want to regain my full strength and athleticism. I am also very scared by the brain fog and slight memory problems. I want to clarify my ataxia never got to a point where I couldn't walk or perform motor functions. Just makes it more difficult than it should be. And I have already had some slight improvement in proprioception and strength. Should I be scared? Or should I recover fine given I only have had this 2 years. I have seen encouraging testimonials on here of people who had it far longer and still recovered. 

Hello. I was in a similar boat i lost my life to this disease and went mentally insane because of it with accelerated heart rate depression and anxiety and found gluten to be the culprit. This was in 2019 lost my job because of it. Been 3 years later on a gluten free diet and feel much more like myself can sleep get on with things going for interviews. I am still absolutely scared of getting glutened but these things take time.

[Wheatwacked]

5 hours ago, Morsicato Francese said:

Should I be scared?

No.

It will take alertness to what you eat.  You'll run into peer pressure and as you start to feel better, you'll begin to doubt its reality.

Find out your blood plasma vitamin D. 70 to 90 ng/ml is what a lifeguard in August has. 

Quote

 

Bruce W. Hollis, PhD, director of pediatric nutritional sciences at the Medical University of South Carolina, Charleston, has conducted vitamin D research for more than 30 years. Fear of vitamin D overdose should not be an area of concern for physicians because in all his years of experience he has yet to see one, he said.

https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s

 

 

[trents]

7 hours ago, Morsicato Francese said:

Hi! I am 21 years old male. 

My story is, in late 2018 I started having issues with anxiety and depression. This remained stable till in late 2020 I started having gut problems. In early 2021, January 3rd to be exact I suddenly started noticing SEVERE fatigue and feeling not myself at all. This progressed to intense anxiety and depression and eventually obvious neurological symptoms. Including VERY mild ataxia, and general numbness. I have lived with this for only 2 years. I now have realized gluten as the culprit thanks to s functional.medicine doctor. I have avoided gluten for a month and seen some mild improvement. But I now I suspect I am still affected by foods that mimic gluten like corn. So I plan to do a full elimination diet to avoid all grains. I will bring this up with my doctor tomorrow. He constantly assures me of a good prognosis but I am crippled with doubt and fear because I don't want to live the rest of my life like this.

My question is, after just 2 years of symptoms and a my age....should I end up OK? I am really, really scared, I love sports and want to regain my full strength and athleticism. I am also very scared by the brain fog and slight memory problems. I want to clarify my ataxia never got to a point where I couldn't walk or perform motor functions. Just makes it more difficult than it should be. And I have already had some slight improvement in proprioception and strength. Should I be scared? Or should I recover fine given I only have had this 2 years. I have seen encouraging testimonials on here of people who had it far longer and still recovered. 

You probably need vitamin supplementation with B-complex, B12, D3 and magnesium (mag glycinate or citrate, not mag oxide). Make sure they are gluten free. This might help as well. Most people who believe they are eating gluten free are missing some sources of gluten through CC (cross contamination) or just ignorance of the myriad of places it is hidden in processed food:

 

 

[Morsicato Francese]

8 hours ago, trents said:

You probably need vitamin supplementation with B-complex, B12, D3 and magnesium (mag glycinate or citrate, not mag oxide). Make sure they are gluten free. This might help as well. Most people who believe they are eating gluten free are missing some sources of gluten through CC (cross contamination) or just ignorance of the myriad of places it is hidden in processed food:

 

 

I get intravenous shots of Methylated B12, Thiamin, and other B vitamins as well as taking sublingual methylfolate tablets. Magnesium is a good suggestion, thank you

 

I just learned about Cross contamination and cross reactivity yesterday and that's what has me so paranoid and probably what has prolonged my recovery...I will bring this up with my naturopath. He's the one who actually diagnosed me and he's super receptive to patients' feedback thankfully thank God 

[Morsicato Francese]

10 hours ago, Wheatwacked said:

No.

It will take alertness to what you eat.  You'll run into peer pressure and as you start to feel better, you'll begin to doubt its reality.

Find out your blood plasma vitamin D. 70 to 90 ng/ml is what a lifeguard in August has. 

 

Good to know. My age and speed of diagnosis is on my side then. Interestingly enough since writing this post I actually got an almost normal sleep and now suddenly am craving gluten like CRAZY...I really wonder if the panic of the last few days has been part of the detox/withdrawal. Not worth eating it but, wow, I'm already craving it intensely 

 

 

[Wheatwacked]

My first nights gluten free I had vivid dreams of Dunkin' Donuts.

How did you manage to get the shots? That's great. It should help put you ahead of the curve. You should also make sure you are getting enough choline in your diet. It forms 95% of the mitochondrial membranes, shares duty with folate and B6 in methylating homocysteine, the toxic sludge created from protein metabolism; and is made into acetylcholine, the molecule needed for nerve transmission. Think Brain Fog.

The DV for potassium in healthy people is about 5 grams a day (4700 mg).  

Quote

In adults aged 20 and over, the average daily potassium intake from foods is 3,016 mg for men and 2,320 mg for women. Insufficient potassium intakes can increase blood pressure, kidney stone risk, bone turnover, urinary calcium excretion, and salt sensitivity.  Mild hypokalemia is characterized by constipation, fatigue, muscle weakness, and malaise. NIH: Potassium Fact Sheet for Health Professionals

 

[trents]

Go easy on the magnesium at first and titrate up until you start to get a laxative effect (think, "milk of magnesia"). Then cut back a little. Mag citrate and mag glycinate are better absorbed than mag oxide but any of them will have a laxative effect if the dosage is too high.

[Scott Adams]

Be sure your diet is 100% gluten-free, and eating in restaurants, even food from a gluten-free menu, is a common source of contamination. In general if your ataxia and other symptoms are caused by gluten, they should improve over the next few months, if your diet is strict enough. 

 

[Morsicato Francese]

7 hours ago, Scott Adams said:

Be sure your diet is 100% gluten-free, and eating in restaurants, even food from a gluten-free menu, is a common source of contamination. In general if your ataxia and other symptoms are caused by gluten, they should improve over the next few months, if your diet is strict enough. 

 

Definitely the plan. I thankfully see a naturopath who knows all of the hidden gluten sources, and he is currently helping me optimize my diet. I'm very thankful to see people saying I should be fine and seeing all the sucesses stories with this 

[trents]

6 minutes ago, Morsicato Francese said:

Definitely the plan. I thankfully see a naturopath who knows all of the hidden gluten sources, and he is currently helping me optimize my diet. I'm very thankful to see people saying I should be fine and seeing all the sucesses stories with this 

That's fine but it will be no substitute for you taking responsibility yourself to learn how gluten is hidden in the food supply, reading labels, etc. Your naturopath cannot be with you everytime you buy groceries or eat out. And you need to be aware that food companies can and often do change their forumulations such that what was gluten free at one time no longer is. Eating truly gluten free as opposed just eating lower gluten requires education and constant diligence.

Edited March 2, 2023 by trents

[Morsicato Francese]

On 3/1/2023 at 7:12 AM, Wheatwacked said:

No.

It will take alertness to what you eat.  You'll run into peer pressure and as you start to feel better, you'll begin to doubt its reality.

Find out your blood plasma vitamin D. 70 to 90 ng/ml is what a lifeguard in August has. 

 

So after this recent flare up I cut out the corn. My doctor said my intuition was right. Yesterday and today, I feel a calm I haven't felt in 2 years, my appetite is stronger already, and I'm not forgetting what I'm doing every 5 minutes. And this is only after 2 days. Extremely encouraging 

[bechari]

Hi,

Just writing that I have got quite a similar situation. Young age, gradual onset of neurological symptoms, not being celiac. I can eat corn though, but not rice as it gives me similar symptoms.

Only thing I have found to help with symptoms (except for elimination diet) is vitamin B and exercise. Stress, alcohol, coffee, bad sleep makes the symptoms worse if I have been glutened.

 

 

[Wheatwacked]

 

@bechari Welcome to the forum. Don't forget potassium, choline and vitamin D with your B vitamins.

"Potassium (K+) is the major intracellular cation, with 98% of the total pool being located in the cells at a concentration of 140-150 mmol/l, and only 2% in the extracellular fluid, where it ranges between 3.5 and 5 mmol/l. A fine regulation of the intracellular-extracellular gradient is crucial for life, as it is the main determinant of membrane voltage; in fact, acute changes of K+ plasma levels may have fatal consequences."   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4947686/#:~:text=Potassium (K%2B) is the,3.5 and 5 mmol%2Fl.

"Moreover, recent studies indicate that vitamin D can regulate the adaptive immune response in various inflammatory and autoimmune diseases. These results suggest the beneficial effects of vitamin D supplementation in decreasing the risk and adverse outcomes of inflammatory diseases, although the precise effect remains to be elucidated in large clinical trials."   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4070857/#:~:text=Beyond its critical function in,which are crucial for the

Symptoms of vitamin D deficiency may include:

• Fatigue
• Not sleeping well
• Bone pain or achiness
• Depression or feelings of sadness
• Hair loss
• Muscle weakness
• Loss of appetite
• Getting sick more easily
• Pale skin

Choline is the only single nutrient for which dietary deficiency is associated with the development of cancer (Newberne and Rogers, 1986).

" based on the NHANES datasets showed that only around 11% of American adults achieve the IOM AI for choline. In Europe it has also been found that average choline intakes are below AI thresholds set by the IOM.23 In Alberta, Canada one study28 showed that only 23% of pregnant women and 10% of lactating mothers (n=600) met the choline AI recommendation and that the main dietary sources of choline were eggs, dairy products and meat. Women consuming at least one egg daily were eight times more likely to meet choline intake recommendations compared with pregnant non-consumers."   https://nutrition.bmj.com/content/early/2019/07/16/bmjnph-2019-000037