My Story (So Far)

[Vanir]

Hello Dear Community!

My name is Peter, and I'm nearly 20 years old. Here's my celiac story (please forgive me for the grammar mistakes, my mind isn't that clear at the moment and English is not my main language).

 

First of all I would like to state that I'm not a heavy alcohol drinker (drinking once a month maybe), I don't do drugs, don't drink energy drinks (maybe really rarely). I avoid junk food. I don't even drink fizzy soft drinks. I drink a lot of water, and I eat healthy. At least that's what I thought.

At the end of December 2014 I had some light diarrhea. Nothing too serious for real. Then it was lasting for more than a week and I instantly went to see a doctor. I had taken some antibiotics which didn't work obviously. I took blood, urine and stool tests, everything came back negative to any viruses / bacterial infections. My problem was still there, and some others came with it. The first new symptom was that my stomach would hurt all day. The second one was the most scary symptom I have ever crossed in my entire life: brain fog. My brain fog, fatigue, lack of concentration actually showed up under one day. Poof, it's there. It didn't take days to come up, it just appeared. It's like I'm being drunk. Can't focus on anything properly, and it's really bad.

All my problems still persist until this very day (except for the stomach ache, it's got better a bit).

Yesterday my doctor sent me to take an appointment to the gastroenterologist, I'll try to take one as soon as possible. Also I have an appointment next week friday to an ultrasound examination in the stomach area.

 

My grandma has celiac as well and she got really deeply into this topic so she really knows a lot about it. She said that all my symptoms led to celiacs even though I didn't take any tests for it so far. 

She also brought me some gluten-free bread, gluten-free flour, amaranth, buckwheat, rice-flour and vitamins, etc. 

 

I'm gluten and lactose free for 2 days now. I'm on a lactose-gluten-meat free diet. All my symptoms are still here. There's one I want to get rid the most, which is the brain fog. I would literally do anything to feel normal in the head again.

I have started taking vitamin complexes, antioxidants and some eastern mushroom extract capsule (more info below). Here are my daily intakes of them:

Vitamin Complex

Mushroom Complex

Liposomal Vitamin C - 600 mg

E-complex - no idea, not much, it's in a form of oil

Vitamin D3 (liquid extract) - 25 mcg

Pineapple and Papaya enzymes

I am planning to take some more B12 (currently I'm taking 2.25 mcg). 

 

Should I change something in that? Should I add something to it?

 

I am also planning to go completely grain free and start some exercises such as running.

I don't quite care about diarrhea, or stomach problems. The main thing I'm focusing on right at this moment is the brain, the clarity of my mind. It's really really really important to me right now as I'll have final exams in May, and I'm planning to go to university in September. I just can't be defocused or careless now.

 

Please, if any of you have any advice for me don't keep it for yourselves, share it with me! Thank you!

[ravenwoodglass]

Welcome to the board. Do NOT stop eating gluten yet. You have to be eating gluten for the GI doctor to be able to test. You don't have to eat a lot of it just enough to equal 2 to 4 slices of bread. It might help to eat your gluten at night. I hope you get some answers soon. 

[MycasMommy]

Yep, dont give up the gluten until youve been tested. Otherwise you will end up in the shoes of so many of us who KNOW something is wrong but now react to gluten and other things so strongly that it is impossible to have even a little, even for a day so we will never really know the problem.  Is there any particular reason you are giving up meat or is it just because your grandmother recommended it?  Only processed meat should say goodbye.  Fresh raw meat that you have to cook would be good.  I know there are vegetarians that are gluten free AND grain free, but I know it must not be very easy. If you research Paleo, they have great tips on going grain and lactose free. I am grain free (not by choice) because I react to every grain with the same symptoms as gluten gives me. Thankfully, I can eat dairy.  Anyway, I only say keep the meat (if you were already an omnivore) because you are getting rid of so many other things all at once and will be depriving your mind and body of a lot of good thigns it is used to having all at once. Please, please get tested.  You have time to get it done before finals, and it is so worth it.

[Vanir]

Thanks for the kind comments, I will get tested of course. I'll also try to keep this topic updated.

[etbtbfs]

Hello Dear Community!

My name is Peter, and I'm nearly 20 years old. Here's my celiac story (please forgive me for the grammar mistakes, my mind isn't that clear at the moment and English is not my main language).

 

First of all I would like to state that I'm not a heavy alcohol drinker (drinking once a month maybe), I don't do drugs, don't drink energy drinks (maybe really rarely). I avoid junk food. I don't even drink fizzy soft drinks. I drink a lot of water, and I eat healthy. At least that's what I thought.

At the end of December 2014 I had some light diarrhea. Nothing too serious for real. Then it was lasting for more than a week and I instantly went to see a doctor. I had taken some antibiotics which didn't work obviously. I took blood, urine and stool tests, everything came back negative to any viruses / bacterial infections. My problem was still there, and some others came with it. The first new symptom was that my stomach would hurt all day. The second one was the most scary symptom I have ever crossed in my entire life: brain fog. My brain fog, fatigue, lack of concentration actually showed up under one day. Poof, it's there. It didn't take days to come up, it just appeared. It's like I'm being drunk. Can't focus on anything properly, and it's really bad.

All my problems still persist until this very day (except for the stomach ache, it's got better a bit).

Yesterday my doctor sent me to take an appointment to the gastroenterologist, I'll try to take one as soon as possible. Also I have an appointment next week friday to an ultrasound examination in the stomach area.

 

My grandma has celiac as well and she got really deeply into this topic so she really knows a lot about it. She said that all my symptoms led to celiacs even though I didn't take any tests for it so far. 

She also brought me some gluten-free bread, gluten-free flour, amaranth, buckwheat, rice-flour and vitamins, etc. 

 

I'm gluten and lactose free for 2 days now. I'm on a lactose-gluten-meat free diet. All my symptoms are still here. There's one I want to get rid the most, which is the brain fog. I would literally do anything to feel normal in the head again.

I have started taking vitamin complexes, antioxidants and some eastern mushroom extract capsule (more info below). Here are my daily intakes of them:

Vitamin Complex

Mushroom Complex

Liposomal Vitamin C - 600 mg

E-complex - no idea, not much, it's in a form of oil

Vitamin D3 (liquid extract) - 25 mcg

Pineapple and Papaya enzymes

I am planning to take some more B12 (currently I'm taking 2.25 mcg). 

 

Should I change something in that? Should I add something to it?

 

I am also planning to go completely grain free and start some exercises such as running.

I don't quite care about diarrhea, or stomach problems. The main thing I'm focusing on right at this moment is the brain, the clarity of my mind. It's really really really important to me right now as I'll have final exams in May, and I'm planning to go to university in September. I just can't be defocused or careless now.

 

Please, if any of you have any advice for me don't keep it for yourselves, share it with me! Thank you!

Make sure you're getting a high-quality probiotic.  If something has messed up your biome, you need to fix it to get good digestive function back.  Oral antibiotics can mess up digestion.

 

You need to keep in mind that gluten can cause many autoimmune diseases, including Hashimoto's, which will eventually destroy the thyroid if you can't get rid of it.  Hypothyroidism is legendary for causing brain fog, confusion, etc.  The most important thyroid test you need is  FT3, whose normal range is about 2.3<FT3<4.2 pg/ml.  At your age, you should be in the upper part of the range, above 3.2.  Do NOT let a doctor tell you that TSH is the only test you need; the most important test is FT3 because the level of free active thyroid hormone you have is what determines how you feel and think.  If your FT3 is below normal or low normal, then the TPO and TgAb antibody tests would be called for to see if there is autoimmune activity going on.

 

Also make sure the problems you've had with digestion haven't tanked your total blood protein level.  Normal range for that is about 6.2-8.3 g/dl.  A male your age should have mid-range or better, and check your albumin level also.

[Vanir]

Thanks for your comment, I'll definitely take another blood test and make sure I get those levels checked as well.

[Vanir]

A little update: Around 5 days after going gluten free my stomach went back to normal, it didn't ache anymore. I didn't have diarrhea for 2 days in a row. Yesterday the diarrhea came back and still persists today.

The brain fog is still there and it slowly drives me crazy.

I talked to a gastroenterologist two days ago, they are going to check my blood for ttga. The results need 3 weeks to come back. Next week I'm gonna go to a food intolerance test which is heavy money but what can I do?

[1desperateladysaved]

A food intolerance test helped me. Please don't let it discourage you if others don't believe in them.   I had brain fog (though evidently not so heavy as yours) for 30 years.  Let's just say that brain fog and I are NO LONGER FRIENDS.  I came up allergic to nearly everything.  My solution was to change to unusual foods that I had never eaten.  I also did Grain Free.  I Am better!

 

Dee

[Zebra007]

Hello Dear Community!

My name is Peter, and I'm nearly 20 years old. Here's my celiac story (please forgive me for the grammar mistakes, my mind isn't that clear at the moment and English is not my main language).

 

First of all I would like to state that I'm not a heavy alcohol drinker (drinking once a month maybe), I don't do drugs, don't drink energy drinks (maybe really rarely). I avoid junk food. I don't even drink fizzy soft drinks. I drink a lot of water, and I eat healthy. At least that's what I thought.

At the end of December 2014 I had some light diarrhea. Nothing too serious for real. Then it was lasting for more than a week and I instantly went to see a doctor. I had taken some antibiotics which didn't work obviously. I took blood, urine and stool tests, everything came back negative to any viruses / bacterial infections. My problem was still there, and some others came with it. The first new symptom was that my stomach would hurt all day. The second one was the most scary symptom I have ever crossed in my entire life: brain fog. My brain fog, fatigue, lack of concentration actually showed up under one day. Poof, it's there. It didn't take days to come up, it just appeared. It's like I'm being drunk. Can't focus on anything properly, and it's really bad.

All my problems still persist until this very day (except for the stomach ache, it's got better a bit).

Yesterday my doctor sent me to take an appointment to the gastroenterologist, I'll try to take one as soon as possible. Also I have an appointment next week friday to an ultrasound examination in the stomach area.

 

My grandma has celiac as well and she got really deeply into this topic so she really knows a lot about it. She said that all my symptoms led to celiacs even though I didn't take any tests for it so far. 

She also brought me some gluten-free bread, gluten-free flour, amaranth, buckwheat, rice-flour and vitamins, etc. 

 

I'm gluten and lactose free for 2 days now. I'm on a lactose-gluten-meat free diet. All my symptoms are still here. There's one I want to get rid the most, which is the brain fog. I would literally do anything to feel normal in the head again.

I have started taking vitamin complexes, antioxidants and some eastern mushroom extract capsule (more info below). Here are my daily intakes of them:

Vitamin Complex

Mushroom Complex

Liposomal Vitamin C - 600 mg

E-complex - no idea, not much, it's in a form of oil

Vitamin D3 (liquid extract) - 25 mcg

Pineapple and Papaya enzymes

I am planning to take some more B12 (currently I'm taking 2.25 mcg). 

 

Should I change something in that? Should I add something to it?

 

I am also planning to go completely grain free and start some exercises such as running.

I don't quite care about diarrhea, or stomach problems. The main thing I'm focusing on right at this moment is the brain, the clarity of my mind. It's really really really important to me right now as I'll have final exams in May, and I'm planning to go to university in September. I just can't be defocused or careless now.

 

Please, if any of you have any advice for me don't keep it for yourselves, share it with me! Thank you!

Hi, I think your rushing everything. I understand your panicking and that you want to be well, but i think you need to carefully work your way through stuff, and cutting out everything all at once is going to be more detrimental to you in the long run...In your place I would continue to eat meat if I had always eaten it, cut out dairy completely whilst waiting to be tested for celiac, you might just have a problem with dairy, its really a process of elimination and I would honestly just focus on those two main issues for the time being, and this cannot be resolved in a couple of days, it takes a bit longer than that. Also I would not  mix and confuse things by taking lots of different supplements, and even if you do decide to take supplements eventually its best to introduce one at a time, waiting a few weeks before adding another, as you will never know for sure if you are ok with that supplement if you take them all at once.   

 

I would hold off on the food intolerance test, it will cost you a lot of money when in fact you could be gluten intolerant.  Also these tests cannot always be relied upon to give accurate results. At best, these tests are a waste of money and are of no help in diagnosis, at worst they are dangerous - either by failing to pick up a significant allergy or by over-diagnosing multiple allergies and they often tend to suggest long lists of foods that could be avoided unnecessarily. This can lead to the exclusion of multiple foods from the diet. Whilst this might be unhealthy for an adult, it can be positively harmful in a child or an adult with complex medical health needs. An extremely restricted diet can lead to severe nutritional deficiencies, and eventually to malnutrition.

 

Bearing in mind you have your finals soon  I would focus on the suggestions you have received here, and try to remain calm and not rush into everything at once.

[Zebra007]

I meant to add that its important to keep a food diary for a short while, write down everything you eat, what you ate, if you have stomach ache, your symptoms, how you feel etc etc, its really helpful.

 

I had a problem with Candida earlier in the year, and I had terrible brain fog, I would open my mouth to say one thing, and something entirely different came out...I doubt that is your problem but I thought I would throw it in to the equation anyway.

[squirmingitch]

 

Hi, I think your rushing everything. I understand your panicking and that you want to be well, but i think you need to carefully work your way through stuff, and cutting out everything all at once is going to be more detrimental to you in the long run...In your place I would continue to eat meat if I had always eaten it, cut out dairy completely whilst waiting to be tested for celiac, you might just have a problem with dairy, its really a process of elimination and I would honestly just focus on those two main issues for the time being, and this cannot be resolved in a couple of days, it takes a bit longer than that. Also I would not  mix and confuse things by taking lots of different supplements, and even if you do decide to take supplements eventually its best to introduce one at a time, waiting a few weeks before adding another, as you will never know for sure if you are ok with that supplement if you take them all at once.   

 

I would hold off on the food intolerance test, it will cost you a lot of money when in fact you could be gluten intolerant.  Also these tests cannot always be relied upon to give accurate results. At best, these tests are a waste of money and are of no help in diagnosis, at worst they are dangerous - either by failing to pick up a significant allergy or by over-diagnosing multiple allergies and they often tend to suggest long lists of foods that could be avoided unnecessarily. This can lead to the exclusion of multiple foods from the diet. Whilst this might be unhealthy for an adult, it can be positively harmful in a child or an adult with complex medical health needs. An extremely restricted diet can lead to severe nutritional deficiencies, and eventually to malnutrition.

 

Bearing in mind you have your finals soon  I would focus on the suggestions you have received here, and try to remain calm and not rush into everything at once.

 

This is excellent advice IMHO. 

[Vanir]

Thank you for your advice! The meat actually came back to the list shortly after I wrote my original post and I do not eat any dairy products since I went gluten free (except a little lactose free butter). The food diary is a really good idea, I've already started thinking what I ate in the last couple of days.

I'll try to keep everything you have said, thank you again.

[squirmingitch]

If you want to get tested you will HAVE to be eating gluten. You will have to do a gluten challenge ir else you will get a false result & that doesn't mean eating gluten for a few days --- its months.

[Vanir]

If you want to get tested you will HAVE to be eating gluten. You will have to do a gluten challenge ir else you will get a false result & that doesn't mean eating gluten for a few days --- its months.

I've already took the blood test I'm waiting for the results (takes like 3 weeks).

[squirmingitch]

Okay, good. Whew!

If they want to do an endoscopy then you'll have to go back to gluten.

[Vanir]

Another update. I've got tested for Candida - negative. My blood test will take another week to come back.

I've no longer got that terrible diarrhea, however my stool is still way more loose than the normal and my belly still makes strange sounds.

Brain fog is still on. Quick emotion changes, fatigue, deconcentration... I am eating gluten again since 26 January but I've cut my sugar income for 3 days now. I don't drink soft drinks, don't eat chocolate and will try not to drink any alcohol (will be hard as I'll have my 20th birthday in a week or so).

I still take some vitamins:

1000 mg C-Vitamin

B-Complex (B1, 2, 3, 5, 6, 12, folic acid)

Selenium + Iod

Iron

Calcium

Magnesium

 

I will also post about my gluten blood test when it finally arrives.

[Vanir]

Alright, I'm reporting in again. The blood test came back negative as expected.

[Zebra007]

Hi, that is good news for you!

 

I have re read your post and it really does sound as though you are eating something that your body is struggling to deal with...or coming into connect with something every day that is triggering these symptoms.  You mentioned energy drinks, those are really bad for people with delicate stomachs,even occasionally. so I would give those a miss  ..also are you being strict on your dairy free diet? you really cant do these things half halfheartedly, I am not saying that you are, but its easy to slip into bad habits, and so I wondered have you checked your supplements, because some contain lactose, also just to complicate things some people are actually sensitive to the protein in milk (Casein) and if you are one of those people it would make you feel ill.  You may be buying things that say lactose free, but they can still contain milk derivatives (protein) 

 

 I have a serious problem with perfumes, chemicals etc, its real bad, one whiff of someones perfume and apart from a headache I seem to lose the ability to think straight, talk, its almost like I have temporary short term amnesia, brain fog if you like! and so I wondered if you are okay with perfumes,dogs, cats, feather pillows, etc, some people react to these things but not always immediately which makes it difficult to pinpoint.

 

I do think the clue is in what you are eating though...Gosh its so difficult to figure out these things!  but I would keep at it, keep on looking and searching for answers.

[Vanir]

Hi, that is good news for you!

 

I have re read your post and it really does sound as though you are eating something that your body is struggling to deal with...or coming into connect with something every day that is triggering these symptoms.  You mentioned energy drinks, those are really bad for people with delicate stomachs,even occasionally. so I would give those a miss  ..also are you being strict on your dairy free diet? you really cant do these things half halfheartedly, I am not saying that you are, but its easy to slip into bad habits, and so I wondered have you checked your supplements, because some contain lactose, also just to complicate things some people are actually sensitive to the protein in milk (Casein) and if you are one of those people it would make you feel ill.  You may be buying things that say lactose free, but they can still contain milk derivatives (protein) 

 

 I have a serious problem with perfumes, chemicals etc, its real bad, one whiff of someones perfume and apart from a headache I seem to lose the ability to think straight, talk, its almost like I have temporary short term amnesia, brain fog if you like! and so I wondered if you are okay with perfumes,dogs, cats, feather pillows, etc, some people react to these things but not always immediately which makes it difficult to pinpoint.

 

I do think the clue is in what you are eating though...Gosh its so difficult to figure out these things!  but I would keep at it, keep on looking and searching for answers.

 

Thanks for your reply!

I'm off my diet since the 26th of January. The Casein might be it, I will try not to eat anything that might contain it. I do not drink energy drinks actually. Last time I drank one was on new year's eve but I've already been struggling with the problem for 3 days when that happened.

I'm not using any perfumes nor deodorant sprays (some natural stuff instead, but tried to change that to something else and I still have my problem). I don't have dogs or cats, and don't have a feather pillow.

I also have varicocele though for a few years now that will need a surgery this year. I've read that that actually can cause severe brain fog and stuff so I'll see after the surgery - which will happen months from now...