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FG006

Many symptons, celiac disease or something else?

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Hello,

I have always had “weird” symptons, I couldn’t put my finger onto it, or I didn’t had much time to do some research but now I might finally know what it is, I think I have celiac disease. Now there are a lot of people who think they have this disease after having (a few) symptons but I have many symptons. English is not my main language so sorry for any errors.

I understand that not every issue/sympton is dangerous/means something, and that others (and healthy people) also have health issues like this but I do feel I kinda have many of them. I also think the combination of all these symptons may mean something. I am tested once for thyroid problems, and once for Lyme disease because I had a big/dangerous tick-bite rash (tested straight after bite).

 

These are symptons I have:

 - I am 19 years old now and acording to my “growthcurve” (heigth of father and mother) My heigth should be 1.80 metres. I started puberty way later than everyone else and I have always been too short, I am 1.68 metres now and I don’t think that I will grow any longer.

 -  I am also kinda tired and sleepy all day long, I thought it was because of school and stuff and that I just needed some rest. But now I have had a holiday, for the past 3 months and I have slept like 8-10 hours everyday and I am still tired and sleepy. My black circles also didn’t dissapear.

- Signs of Anemia (rapid heartbeat, headache, dizzines, pale skin – can see veins trough my skin, had little cracks at the corners of my mouth some years ago)

 - Sudden muscle spasms (once per day or so)

- I am born with asthma and Acid Reflux

- Small individual red spots on torso

- Joint/bone/muscle pain (few times a day, doesn’t hurt too bad)

- “Pop” elbows (since a year or so)

- Pale sores in mouth (few times a year)

- Bad tooth (I brush 2 times a day with an electric brush but still many problems when I go to the dentists)

- Bloating and constipation – stool really, really smelling bad & oily (also Diarrhea few times per week)

- (Hereditary) Hairloss – bald temples already

- Migraine including temporary “blind spots” in sight

- Chestpains in hearth-area - maybe just ribcage

- Ocasionally strange things in eyesight, not only normal floaters but sometimes also hundreds of VERY fast moving transparant bolls. Sometimes I suddenly see a very flashy thing in my eyesight for a few seconds.

- Takes long to actually fall in sleep after going to bed

 

I had the intestinal problems all my life, but I just thougth that they where normal and when I was very young I didn’t really had so many issues like I have now.

When I was like 14 years old many of the problems started. I became tired, got little cracks on the sides of my mouth a few times,  got migraine with the blind spots in my vision and it was harder for me too sleep. Got some pale sores. I actually ended up in the hospital because I had an unbearable pain under my ribs (right lower quadrant), they thougth that I had a perforated cecum but luckily that was not the case – they didn’t really know what it was but I had high fever and I threw up 20 times or so. 

Around 17 years old, I started balding. Strangely the migraine was now gone but instead I have more signs of anemia. I also got the muscle spasms and the joint/bone/muscle pain. The weird fast moving bolls and light circles make their appearance.

It seems, the older I get the more issues I get. I eat a decent and good amount of vegetables and fruits.

 What do you guys think? Is it maybe celiac disease, or is there something else?

 

Edited by FG006

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2 hours ago, FG006 said:

Hello,

I have always had “weird” symptons, I couldn’t put my finger onto it, or I didn’t had much time to do some research but now I might finally know what it is, I think I have celiac disease. Now there are a lot of people who think they have this disease after having (a few) symptons but I have many symptons. English is not my main language so sorry for any errors.

I understand that not every issue/sympton is dangerous/means something, and that others (and healthy people) also have health issues like this but I do feel I kinda have many of them. I also think the combination of all these symptons may mean something. I am tested once for thyroid problems, and once for Lyme disease because I had a big/dangerous tick-bite rash (tested straight after bite).

 

These are symptons I have:

 - I am 19 years old now and acording to my “growthcurve” (heigth of father and mother) My heigth should be 1.80 metres. I started puberty way later than everyone else and I have always been too short, I am 1.68 metres now and I don’t think that I will grow any longer.

 -  I am also kinda tired and sleepy all day long, I thought it was because of school and stuff and that I just needed some rest. But now I have had a holiday, for the past 3 months and I have slept like 8-10 hours everyday and I am still tired and sleepy. My black circles also didn’t dissapear.

- Signs of Anemia (rapid heartbeat, headache, dizzines, pale skin – can see veins trough my skin, had little cracks at the corners of my mouth some years ago)

 - Sudden muscle spasms (once per day or so)

- I am born with asthma and Acid Reflux

- Small individual red spots on torso

- Joint/bone/muscle pain (few times a day, doesn’t hurt too bad)

- “Pop” elbows (since a year or so)

- Pale sores in mouth (few times a year)

- Bad tooth (I brush 2 times a day with an electric brush but still many problems when I go to the dentists)

- Bloating and constipation – stool really, really smelling bad & oily (also Diarrhea few times per week)

- (Hereditary) Hairloss – bald temples already

- Migraine including temporary “blind spots” in sight

- Chestpains in hearth-area - maybe just ribcage

- Ocasionally strange things in eyesight, not only normal floaters but sometimes also hundreds of VERY fast moving transparant bolls. Sometimes I suddenly see a very flashy thing in my eyesight for a few seconds.

- Takes long to actually fall in sleep after going to bed

 

I had the intestinal problems all my life, but I just thougth that they where normal and when I was very young I didn’t really had so many issues like I have now.

When I was like 14 years old many of the problems started. I became tired, got little cracks on the sides of my mouth a few times,  got migraine with the blind spots in my vision and it was harder for me too sleep. Got some pale sores. I actually ended up in the hospital because I had an unbearable pain under my ribs (right lower quadrant), they thougth that I had a perforated cecum but luckily that was not the case – they didn’t really know what it was but I had high fever and I threw up 20 times or so. 

Around 17 years old, I started balding. Strangely the migraine was now gone but instead I have more signs of anemia. I also got the muscle spasms and the joint/bone/muscle pain. The weird fast moving bolls and light circles make their appearance.

It seems, the older I get the more issues I get. I eat a decent and good amount of vegetables and fruits.

 What do you guys think? Is it maybe celiac disease, or is there something else?

 

You absolutely could have Celiac Disease...and you may also have Gall Bladder problems...it sounds like you experienced a gall bladder attack when you were throwing-up...Many of us with the disease have a lot of other problems also...anemia..and  vitamin and mineral deficiencies also...Find a Dr. that will listen to you!!! Goodluck

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10 hours ago, lisas11lisa said:

You absolutely could have Celiac Disease...and you may also have Gall Bladder problems...it sounds like you experienced a gall bladder attack when you were throwing-up...Many of us with the disease have a lot of other problems also...anemia..and  vitamin and mineral deficiencies also...Find a Dr. that will listen to you!!! Goodluck

Thanks for the reply. Now that I look on the internet it is indeed possible that that may have been a gall bladder attack. Now I am definitely going to see a Dr, as the evidence is kinda building up.

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See that a doctor tests you properly for both celiac disease as well as gallbladder. Many celiacs have been dx'd with gallbladder problems, had the gallbladder removed & symptoms didn't resolve because it was actually celiac but they weren't tested for that. Gallbladder can be a problem concurrently with celiac so really you need to be throughly checked out for both.

Good luck!

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35 minutes ago, squirmingitch said:

See that a doctor tests you properly for both celiac disease as well as gallbladder. Many celiacs have been dx'd with gallbladder problems, had the gallbladder removed & symptoms didn't resolve because it was actually celiac but they weren't tested for that. Gallbladder can be a problem concurrently with celiac so really you need to be throughly checked out for both.

Good luck!

So true...they think I had C D for probably 25 years....noone ever mentioned my GB till I had 2 attacks...4 years apart...horrible!!!

 

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Wanted to make an appointment to talk about this and to get some bloodtests. But unfortunately my doctor is away for vacation or he doesn't have any space for new appointments in the coming 2 weeks. Will give them a call tomorrow to ask what the options are. 

Curious to see how this works out because I don't think that the doctors/hospital ever considered celiac disease or something similair. Despite me having registered symptons: late puberty, less growth then expected, asthma, acid reflux, hairloss, few nights in hospital. They medically confirmed all of these and yet they only tested me for thyroid problems..

Edited by FG006

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1 hour ago, FG006 said:

  They medically confirmed all of these and yet they only tested me for thyroid problems..

You're not alone, this board is full of people who the medical establishment as let down in one way or another. Awareness of celiac is not good it seems. If it does turn out you have it you will find lots of support and shared experience here. 

Remember that you need to keep eating gluten throughout the diagnostic process, so don't be tempted to make diet changes just yet! 

Veel geluk!

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On 8-8-2016 at 6:48 PM, Jmg said:

You're not alone, this board is full of people who the medical establishment as let down in one way or another. Awareness of celiac is not good it seems. If it does turn out you have it you will find lots of support and shared experience here. 

Remember that you need to keep eating gluten throughout the diagnostic process, so don't be tempted to make diet changes just yet! 

Veel geluk!

Thanks! I have an appointment tomorrow morning.

Hope the doc is a bit supportive.

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So I just went to see the doctor, it was a doctor who normally doesn't work there but the others where away on vacation. 

He noted all my symptoms in the computer. He said that a lot of people have weird/strange symptoms like this and that it may be normal (yeah like it's completely normal to be balding and to have heartproblems when you are 17 years old - that's when both started), and that for example only 1 out of 5 people who come there with these symptoms have celiac disease. In my opinion that's a lot for such a destructive/lifechanging disease but alright. He said it was a good idea for me to go to a dietician to try a gluten-free diet for like 6 weeks to see how I would react.

Now I know from this forum and the internet that following a gluten-free diet is not so good if you want to have your blood tested because it can result in a false negative. So I insisted on having my blood checked first. He only wanted to test for antibodies against gluten but I also said that I wanted to test folic acid and vitamin B12 levels (because if the test is negative or falsely negative the folic acid and b12 should still be an indicator whether I have celiac or a similair disease).

So here we are, I need to call them in 1 week to discuss the results. It's about time that this gets sorted out.

 

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Good for you for pressing the issue and advocating for yourself!  Just so you know, vitamin deficiencies even without celiac disease can answer a lot of questions, as a vitamin deficiency will cause all kinds of problems.  And celiac disease is not the only cause of vitamin deficiencies.  Do let us know what you find out, either way.

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I called them yesterday but they didn't got the bloodtest results on time or whatever. Buy today the results came in and I am tested negative for celiac diease antibodies and anemia. It did became clear that I had a bit of a folic acid deficiency. So they advised me to eat more green vegetables, fruits and bread. Which is kinda weird because I eat these everyday.

I will wait until my doctor is back to discuss the results (and to see which antibodies are tested). I plan on asking more bloodtests (on all vitamins and such) since it became clear that I do have a deficiency and I may have more..   

If these tests point out that I have more deficiencies, should I ask for a biopsy?

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Pick up a good multivitamin that does NOT include extra iron.  It might help bring up your folate without overdosing on the other stuff.  Sometimes getting answers to medical mysteries like yourself is slow, hard work, but you're now one step closer.  Keep pushing!  I hope you feel better soon. :)

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