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Hi guys,

1 month ago I found out about celiac and this site and I decided to make an account but didn't posting nothing because I was not sure. Long story short, I feel trully sick since 2008-2009 despite the fact all my test, blood, RMN, scanning each organ from body for cancers anything you name it, I did the test. All the god damn doctors said you are fine, is everything in your head and so on BUT nobody ask me what I eat. Here is the list with my symptoms:

Migraines.

Muscle spasms.

Memory loss.

Deteriorated vision for right eye over night just like that my view became blurred a little 2-3 years ago.

Less production of collagen, dry skin on face.

I can see blood vessels in mirror if I get very closer on my nose, tiny little blood vessels.

I'm looking tiered and feel tiered all the time no matter how much I sleep.

My skin around eyes was always red/bluish like a drug addicts look.

Stomach pains/cramps/bloating/gas

Intestinal pains.

Constipated since I live on this earth.(1 time at 3-4 days which is not normal since I was kid)

Fatigue/brain fog

Depression maybe? Not sure but for sure moments of anxiety because I always ask everyday what is wrong with me or with my body which makes me to feel depressed in my last 10 years.

Poor concentration.

Sleep problems occasionally.

Throat pain/lump in neck.

Heart is beating more than normal and sometimes has skips of beatings then start to beat fast then slow for no reason, no matter what I do, watching a movie, waiting to get asleep and so on.

**EDIT**

I forgot to say that I also use to have:

Panic attacks for no reason.

Vomit mood without vomiting almost everyday, I use to drink alot of water with lemon for this and after a while I was getting better but not always. The point is it was not normal to feel like I will vomit.

 

So with all these symptoms all the doctors said well the results are fine maybe you need more air and stuffs like that BUT nobody ask me what I eat. So I found out about celiac on google and all after I read the symptoms of this disease I said "OK, I never seen something so closer to this. I was looking/tried in the past for all kinds of disease but never so close as symptoms so I decided to go gluten free. 3 days later for the first time in my 10 years of my life I see improvments in my health. My memory got better, my migraines got better, my body stars to produce collagen on my face, my concentration got better, my heart beat slower, muslce spams better, more energy, more strength in my muscles everything got better, no more constipation for the first time in my life I'm going everyday to bathroom(Sorry about that but is true), my vision got better.

 

My old diet was, 30% diary, 10% procesed sweets, 10% raw food, 25% meat and 25% bread.

New diet, 50-60% vegetables half of them raw, 30% fruits and 10% meat only fish. I eat also alot of spinach.

 

So I do not make any test yet for celiac. I do not have any plan go to back to my gluten diet because I'm feel better now, I'm not healed no but I'm feel slighy better which is a thing for me. I will make a test maybe for gens to see if I have that celiac gens but I don't want to make that test which means to eat with gluten for 3 weeks, no way. I also think to go only spinach and fish as I diet for a few months and slowly introduce one by one to see for what I have allergies because now I see after going gluten free that even some non gluten things give me stomach pains like soy or garlic or sasame seeds, I suspect much more than this to be allergic and I don't know which one of them so I have to test myself. For example if I eat only spinach for one day I have nothing, next day if I eat something which I suspect cause me allergies like stomach pain and bloating/gases my energy goes down. I lose about 7-8 pounds in 1 month oh btw I'm male, 28 years old if this matter. I'm still feel sick I do not expect to heal overnight but is something for me because I see improvments in my health. 10 years of damaging my body without knowing, what's wrong with these doctors? I told to each one all my symptoms, nobody told me or ask me what I eat. No one.

 

 

Edited by John Ocean

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Hi and welcome :)

Firstly, none of us can diagnose you. I do recognise a lot of my symptoms in yours - the heart skipping beat for instance or the blurred vision. I also recognise a lot of the mental stages you've been through. The anger at the medical profession, the realisation as you see the different symptoms outlined and recognise yourself in them. Or the bitterness at the years wasted looking for other illnesses that weren't there. So if it helps any, you're not alone!

This:

1 hour ago, John Ocean said:

So I do not make any test yet for celiac. I do not have any plan go to back to my gluten diet because I'm feel better now, I'm not healed no but I'm feel slighy better which is a thing for me. I will make a test maybe for gens to see if I have that celiac gens but I don't want to make that test which means to eat with gluten for 3 weeks, no way

tells me you're aware that any diagnosis would require you to undergo a gluten challenge.  I understand how that may sound once you've finally started to get better, but don't discount it straight away. Yes it can be unpleasant, but a positive diagnosis could lead to better knowledge about your intestinal health or nutrient levels. It's easier if you can find a doctor that you trust than doing this all alone. I don't think the genetic test would tell you much. 30% of people have those genes in any case. 

If testing isn't for you then read this thread: https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ that will help get better at the diet.  You would need to be strict on the diet as if you are celiac you will get more sensitive as time goes on and smaller amounts can trigger a reaction. One reason some try and get testing sooner rather than later. 

You mention other food issues, dairy is the most common and a problem for me. Some celiacs can reintroduce it after they heal. Keeping a food diary can help you track those down. Lots of good advice available here, spend some time browsing or ask away! 

Best of luck

Matt

 

 

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26 minutes ago, Jmg said:

Hi and welcome :)

Firstly, none of us can diagnose you. I do recognise a lot of my symptoms in yours - the heart skipping beat for instance or the blurred vision. I also recognise a lot of the mental stages you've been through. The anger at the medical profession, the realisation as you see the different symptoms outlined and recognise yourself in them. Or the bitterness at the years wasted looking for other illnesses that weren't there. So if it helps any, you're not alone!

This:

tells me you're aware that any diagnosis would require you to undergo a gluten challenge.  I understand how that may sound once you've finally started to get better, but don't discount it straight away. Yes it can be unpleasant, but a positive diagnosis could lead to better knowledge about your intestinal health or nutrient levels. It's easier if you can find a doctor that you trust than doing this all alone. I don't think the genetic test would tell you much. 30% of people have those genes in any case. 

If testing isn't for you then read this thread: https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ that will help get better at the diet.  You would need to be strict on the diet as if you are celiac you will get more sensitive as time goes on and smaller amounts can trigger a reaction. One reason some try and get testing sooner rather than later. 

You mention other food issues, dairy is the most common and a problem for me. Some celiacs can reintroduce it after they heal. Keeping a food diary can help you track those down. Lots of good advice available here, spend some time browsing or ask away! 

Best of luck

Matt

 

 

Well Dr Osborne explained in one of his youtube videos that you can have intenstinal damage and while you do your endoscopy(I hope is correct) the extracted piece of your stomach can be that where is not damaged and the result will came back as "you are fine" while you are not fine. It's kind of tricky with the test but like I said finally after 10 years of feel like a zombie I start to see improvments. I always suspected the food but never the "gluten" thing which is grain, I tried everything including quit smoking, I quit 1 year ago and no improvments, maybe a little bit more energy but that was all. You have no ideea how many days, weeks googling online hoping to find an answer. We living in this society where nobody is telling you what is wrong and what is good, there is no treatment for celiac so nobody is intersted to cure you, no profit.

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Yes its true that testing is not infallible. Although even a negative test can still be helpful. My own test was negative, but because I kept a food diary during the challenge period I was able to tie the returning of various symptoms to eating gluten. My doctor told me to avoid it for life even though the endoscopy was negative. 

Ultimately it's your call and there's pros and cons to each position. The challenge can be unpleasant, the scope may miss damage etc. On the other hand some people need a diagnosis to keep themselves on the diet. Thats never been a problem with me as gluten makes me feel terrible!

1 hour ago, John Ocean said:

I always suspected the food but never the "gluten" thing which is grain, I tried everything including quit smoking, I quit 1 year ago and no improvments, maybe a little bit more energy but that was all. You have no ideea how many days, weeks googling online hoping to find an answer. We living in this society where nobody is telling you what is wrong and what is good, there is no treatment for celiac so nobody is intersted to cure you, no profit.

I was much the same. I'd realised food had a big impact on me, my depression improved after I did a diet change for instance and Id come to realise bread was something I had to go easy on. But realising it was gluten still came as a massive shock and it took me a long time to process it. 

One thing which is easy to say but not so easy to do. Try and focus on the positive, that now you have an answer and can start feeling better. You've done well to put these pieces together. 

 

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