A Post Diagnosis Rant, And Hello :d

[charlieroseburns]

I wanted to become active talking on this website, so I thought I would introduce myself. :] My name is Charlie. It has been hard finding someone else to talk gluten-free with, so I am really happy that this forum exist. 

I have dealt with the symptoms of celiac for a long time with no answer: being underweight, malnutrition, way to much toilet paper usage (8 times a day, ew), nausea, depression, sleep issues, low energy and anxiety. My doctor treated the symptoms with lots of medication.

Symptoms got so bad that I spent all my time outside of work and school in bed sick. I went to one of those same day appointment urgent care offices, and asked the nurse practitioner to order lab work for every blood test she could think of. I was in my pajamas crying. (I'm pretty sure she thought I was insane.) They indicated celiac disease and malnutrition, so I went to a GI doctor to confirm. He said the blood tests were indicative enough for him to recommend that I immediately stop eating gluten and that I didn't need the EGD. I think he could sense my stubbornness and agreed quickly. I was actually happy when the biopsy confirmed celiac because I had an answer I could fix.
First 3 weeks of gluten-free was terrible. I was irritable and sick, but I saw improvement after that. 
I have lost all hope eating out. I inform the person taking my order of celiac and request safe items on the menu. Eating out is causing me to get sick, so I've stopped. 
I don't know if this is a celiac symptom, but the vessels in my eye burst randomly. (In the white part). Also, doctors always tell me my pupils are chronically dilated and don't respond to light correctly. Those two symptoms have always bugged me, because I still can't find an answer.
I had no idea what celiac was prior to diagnosis. I find it frustrating that my symptoms were treated for 7 years with pills, and the first person to suggest celiac was a nurse practitioner in urgent care. My general doctor and psychiatrist both said my symptoms were caused by the high stress of work. My GI doctor said many of his patients have reduced issues with sleep and anxiety. A diagnosis would have been great before my body became reliant on sleeping pills and anti anxiety meds. Reducing them has been a struggle. I don't mean to sound bitter, I am actually REALLY happy to finally have an answer. I just wish it would have been sooner.
I look forward to talking with you guys in the future and sharing recipes in the other forum topic. I LOVE COOKING/BAKING, so gluten-free is just a new challenge that I enjoy. Promise future posts wont be long rants! ;]

[cyclinglady]

Hey Charlie! Welcome to the forum!

Most of us have been in your position and were told that it was "all in your head". I am glad that you are on the road to recovery!

[mamaw]

Hello & Welcome....

 

I  think  there  are  hundreds  of  us  who have   been told  depression,  "all in  your  head" , stress  & so many  more  things  before  a  true dx's,.......... very  sad but  the  great  news  is  someone  mentioned  the  "C" word  &  it  isn't  cancer  but  celiac....  It is almost  like   a  miracle  when  someone  finds  out they  have  celiac & not  fifteen  other  illness'...

As  much  as  we all dislike  celiac  it  is  an easy  fix compared to other  illness...If  only  more  doctors  would  learn & become  aware  of  celiac : dx's  could  be   faster  instead  of  ten years  down the  road after  people  have  lost  faith  in the medical profession...and  ten years  of  poor  degrading  health.....

Glad  you got  answers  &  it  sounds like  you  will slay this  dragon ....... Read  all you can about  the gluten-free  lifestyle,  it  truly  isn't  that  bad  once  you get the  basics  , and  its  great  you  like  to cook & bake... Kudos to you.....

best of luck on  your  new  gluten-free  journey....

[nvsmom]

Welcome to the board, Charlie.  I hope you continue to feel better.

 

I know that blood shot eyes can be considered a symptom of celiac disease but I've never heard of the chronically dilated pupils being associated with celiac disease.  Eye problems can be made worse by celiac disease so they are always good to get looked into. Hopefully things will improve as time goes by but I would see the eye doctor about autoimmune eye issues too.

 

I feel your frustration with how long it takes to get a celiac disease diagnosis. I've heard it can take 10 years to get a diagnosis... That's way too long. I was undiagnosed for many many years myself, and was deeply frustrated that I could have been healthier decades earlier if only someone, anyone, had figured it out for me.

 

At least we know now, right?   Best wishes

[charlieroseburns]

Thanks for your posts! Before this I tried joining some Facebook support sites but there wasn't much talking going on. This site has a great community!

Going to make an eye appointment tommorow and see if they can give me an answer.

I'm have spent most of today browsing and learned a lot!

[artistsl]

On 11/29/2014 at 11:12 PM, charlieroseburns said:

Thanks for your posts! Before this I tried joining some Facebook support sites but there wasn't much talking going on. This site has a great community!

Going to make an eye appointment tommorow and see if they can give me an answer.

I'm have spent most of today browsing and learned a lot!

I know you posted this years ago, but I'm hoping you're still active on here. I'm writing because my 4 year old son has experienced some sudden neurological issues. We pulled him off of gluten and all of these symptoms seem to be going away and/or getting better, like weird finger posturing, sleep disturbances, mood instability, etc. However, since we've been gluten free (it's been 6 weeks) he's since started experiencing brief episodes where his pupils will become dilated and once noticed an episode where he experienced constricted pupils. He touches the area around his eyes when this happens, as if it may bother him, but when I ask him whether his eyes bother him he ignores my questions. Do you still experience dilated pupils? Did you ever end up seeking an opinion of an optimologist??

[kareng]

9 minutes ago, artistsl said:

I know you posted this years ago, but I'm hoping you're still active on here. I'm writing because my 4 year old son has experienced some sudden neurological issues. We pulled him off of gluten and all of these symptoms seem to be going away and/or getting better, like weird finger posturing, sleep disturbances, mood instability, etc. However, since we've been gluten free (it's been 6 weeks) he's since started experiencing brief episodes where his pupils will become dilated and once noticed an episode where he experienced constricted pupils. He touches the area around his eyes when this happens, as if it may bother him, but when I ask him whether his eyes bother him he ignores my questions. Do you still experience dilated pupils? Did you ever end up seeking an opinion of an optimologist??

Did you take your child to a medical doctor before making him gluten-free?  This sounds serious.  Hopefully, you had him tested for Celiac before you took him off of gluten?  At least then you will know if this is Celiac related nerve issues or to look for something else.

[artistsl]

35 minutes ago, kareng said:

Did you take your child to a medical doctor before making him gluten-free?  This sounds serious.  Hopefully, you had him tested for Celiac before you took him off of gluten?  At least then you will know if this is Celiac related nerve issues or to look for something else.

He's had an extensive neuro work up. So far everything has come back negative and for lack of better answers we were told the dilated pupils are likely just a tic disorder. The psychologist who we met with advised to continue with the gluten free diet. We've seen much improvement on the diet. So much so that we can't imagine going back to gluten. 

[kareng]

14 minutes ago, artistsl said:

He's had a full work up with a neurologist at Cincinnati children's and we've even flown to Boston children's to consult with a neurologist there. We go to Mayo next month. So far everything has come back negative and for lack of better answers we were told the dilated pupils are likely a tic disorder. The psychologist who we met with in Boston advised to continue with the gluten free diet. It seems to be helping so much so that we can't imagine going back to gluten.

That's good - the part about going to a doctor or two. It's a shame they didn't test for Celiac before advising you to take him off gluten.  

  You wouldn't believe the number of people  I see in my " real" life that take kids off gluten as a magical cure and never consult an actual MD for very real problems.

[kareng]

If you click on someone's picture, you will see their profile.  That will tell you the last time they logged in to the forum.  In this Charlie's case. Looks like 2 years ago

[artistsl]

8 minutes ago, kareng said:

That's good - the part about going to a doctor or two. It's a shame they didn't test for Celiac before advising you to take him off gluten.  

  You wouldn't believe the number of people  I see in my " real" life that take kids off gluten as a magical cure and never consult an actual MD for very real problems.

I'm realizing I probably didn't want to share too much detail on my above post, but it seems I am unable to delete or make edit.  

[artistsl]

7 minutes ago, kareng said:

If you click on someone's picture, you will see their profile.  That will tell you the last time they logged in to the forum.  In this Charlie's case. Looks like 2 years ago

Thanks!

[kareng]

4 minutes ago, artistsl said:

I'm realizing I probably didn't want to share too much detail on my above post, but it seems I am unable to delete or make edit.  

You should be able to edit for 48 hours - under your post it says " edit".  but you can't edit what another person has "quoted".

[cyclinglady]

Hey, we just had a recent posting about eye dilation (2/24/17) and kids were involved.  Hope this helps!  

Just wanted to add to keep advocating for your son's health!  You are doing a great job!  My heart goes out to you and your family.  

If gluten is the culprit, you might need to think how he can qualify for a 504 plan for school.  It is one of the many reasons, we push for testing.  Plus, a formal diagnosis helps with family and medical support.  But....he has been gluten free for weeks and you have seen improvement.  A gluten challenge should only be done under a medical doctor's care.  

Tell his psychologist that he/she should not offer up a gluten free diet to patients without first testing for celiac disease.  You might help another child!  

Here is a link that explains the reasons why testing is important from the celiac disease Foundation:

Open Original Shared Link

Hugs!  

[ironictruth]

6 hours ago, kareng said:

That's good - the part about going to a doctor or two.  a shame they didn't test for Celiac before advising you to take him off gluten.  

  You wouldn't believe the number of people  I see in my " real" life that take kids off gluten as a magical cure and never consult an actual MD for very real problems.

You mentioned doing a neuro work up in Boston.  There is also a Celiac disease Research Center At  the Pediatric Hospital in Boston at Mass General. Why don't you give them a call? 

 In fact one of the docs there is well-known. Alessio Fasano.  In some of his writings he references TTG 6 which is an antibody that is associated with some neurological issues.  I believe they were doing studies on schizophrenia and brain inflammation. But I have also seen studies have TTG 6 antibodies being associated with symptoms that mimic ALS.  vaguely, I believe I had seen something about how there is not always intestinal damage in these cases. I also read a story somewhere I believe about Fasano meeting a child with autism who ended up having celiac disease. They put him on a gluten-free diet and he was able to regain a lot of skills.

It would be nice for you to know for certain.  Trust me I am going through a lot of weird symptoms myself right now and one of them is an on-and-off extreme pressure feeling in the brain. Not a headache, but more like an internaL vice squeezing.  it makes my eyes feel like there's a tremendous amount of pressure behind them as well. not knowing for certain will always leave you guessing and wondering and waiting for the next moment when things are going to get worse.   at least if you have some reassurance diagnostically he may be more comfortable dealing with the strange symptoms as they come. I would definitely encourage you to call.

[ravenwoodglass]

11 hours ago, artistsl said:

He's had an extensive neuro work up. So far everything has come back negative and for lack of better answers we were told the dilated pupils are likely just a tic disorder. The psychologist who we met with advised to continue with the gluten free diet. We've seen much improvement on the diet. So much so that we can't imagine going back to gluten. 

Perhaps the doctor that told you to continue on the diet might give you the official diagnosis so he can get the accomodations he will need to have in school? 

[artistsl]

On 3/14/2017 at 11:10 AM, ravenwoodglass said:

Perhaps the doctor that told you to continue on the diet might give you the official diagnosis so he can get the accomodations he will need to have in school? 

That is a great idea! Thank you! By the way, I had no idea that you would even need to have a doctor order for the school to acknowledge a specific dietary need. That is extremely important information. Thank you so much for everything. This all is incredibly overwhelming and this website is just a blessing.

[artistsl]

On 3/14/2017 at 6:46 AM, ironictruth said:

You mentioned doing a neuro work up in Boston.  There is also a Celiac disease Research Center At  the Pediatric Hospital in Boston at Mass General. Why don't you give them a call? 

 In fact one of the docs there is well-known. Alessio Fasano.  In some of his writings he references TTG 6 which is an antibody that is associated with some neurological issues.  I believe they were doing studies on schizophrenia and brain inflammation. But I have also seen studies have TTG 6 antibodies being associated with symptoms that mimic ALS.  vaguely, I believe I had seen something about how there is not always intestinal damage in these cases. I also read a story somewhere I believe about Fasano meeting a child with autism who ended up having celiac disease. They put him on a gluten-free diet and he was able to regain a lot of skills.

It would be nice for you to know for certain.  Trust me I am going through a lot of weird symptoms myself right now and one of them is an on-and-off extreme pressure feeling in the brain. Not a headache, but more like an internaL vice squeezing.  it makes my eyes feel like there's a tremendous amount of pressure behind them as well. not knowing for certain will always leave you guessing and wondering and waiting for the next moment when things are going to get worse.   at least if you have some reassurance diagnostically he may be more comfortable dealing with the strange symptoms as they come. I would definitely encourage you to call.

Thank you so much for the reference and the details regarding the specific subset of this disease that we may potentially be dealing with. This is the exact issue that I am trying to understand better. Truly grateful for the information.

[GFinDC]

Hi,

Gluten ataxia is the term for the brain affecting condition in celiac disease.  It can cause a variety of neuro symptoms, including difficulty walking.  If seems like recovery from nerve related issues can be slower than some other types of damage.  The immune system is very powerful and doesn't give up on a fight easily.  So it takes time for the immune system to settle down and stop attacking the body.

I suggest that new people on the gluten-free diet concentrate on meats, veggies, nuts, and eggs.  Avoid dairy and anything processed for a few months at least.  That way the person has time to learn the in and outs of the gluten-free diet.  The processed foods are more "risky" than whole foods are.  Even gluten-free processed foods are not great because they usually have lots of carbs and sugar, which is bad for the gut flora recovery.  Dairy si often a problem at first because the enzyme to digest dairy sugar (lactose) is made by the tips of the villi.  Those villi are (temporarily( destroyed by celiac disease.  So dairy can be problematic for beginners.  After some months recovering, dairy may be ok.  It all depends on the individual, some people never have a problem with dairy.

Another thing to be aware of, is that about 10% of celiac have an immune reaction to oats like they do wheat. rye, and barley.  So it is best to avoid oats for a few months at least, just in case.

 

[artistsl]

22 hours ago, GFinDC said:

Hi,

Gluten ataxia is the term for the brain affecting condition in celiac disease.  It can cause a variety of neuro symptoms, including difficulty walking.  If seems like recovery from nerve related issues can be slower than some other types of damage.  The immune system is very powerful and doesn't give up on a fight easily.  So it takes time for the immune system to settle down and stop attacking the body.

I suggest that new people on the gluten-free diet concentrate on meats, veggies, nuts, and eggs.  Avoid dairy and anything processed for a few months at least.  That way the person has time to learn the in and outs of the gluten-free diet.  The processed foods are more "risky" than whole foods are.  Even gluten-free processed foods are not great because they usually have lots of carbs and sugar, which is bad for the gut flora recovery.  Dairy si often a problem at first because the enzyme to digest dairy sugar (lactose) is made by the tips of the villi.  Those villi are (temporarily( destroyed by celiac disease.  So dairy can be problematic for beginners.  After some months recovering, dairy may be ok.  It all depends on the individual, some people never have a problem with dairy.

Another thing to be aware of, is that about 10% of celiac have an immune reaction to oats like they do wheat. rye, and barley.  So it is best to avoid oats for a few months at least, just in case.

 

I can't thank you all enough for everything. You wouldn't know whether there is any common medical treatments for this gluten ataxia such as immunotherapy (IVIG or plasmapheresis, steroids)?

[cyclinglady]

Gluten Ataxia is still relatively "new".  Unfortunately, there has not been much research.  It may not apply to your child as it tends to impact gait.  The treatment is a very strict gluten free diet.  But many celiacs (who do not have ataxia) do have neurological issues.  Brain fog, tingling arms and legs, itching, but no rash, anything to do with the nervous system can be the result of untreated celiac disease.  Again, the treatment is a gluten free diet because they have celiac disease.  Neurological symptoms outshine intestinal symptoms.  

Read more about gluten ataxia from Jane Anderson a journalist who reports on celiac disease.  She has DH, so she is very very conservative in her gluten free diet.  

Open Original Shared Link

Here is more about gluten ataxia and treatment:

Open Original Shared Link

Open Original Shared Link

From the Montana State University is a "man made from gluten."   A fun depiction of areas of the body that celiac can affect.  Not everyone gets all these symptoms.   Symptoms vary so much making celiac disease hard to diagnose and that is why testing is often critical.  

Open Original Shared Link

As you can see gluten ataxia, is not well known or understood.  There are other forms of ataxias that are not gluten related and just plain old celiac disease can impact the nervous system.  

 

 

[GFinDC]

I am not sure if there are any new treatments for gluten ataxia.  Complete avoidance of all gluten is the most important treatment.   This Dr. Hadjivassiliou did some studies on gluten ataxia.  You might find more info by looking up his research.

Here are a few links with info.

Nuerological symptoms without gastro symptoms
Open Original Shared Link

Dietary treatment of gluten ataxia
Open Original Shared Link

Ubo's, Epilepsy And Celiac
https://www.celiac.com/forums/topic/20198-ubos-epilepsy-and-celiac/?hl=%2Bunidentified+%2Bbright+%2Bobject

[knitty kitty]

Just wanted to add another article or two:

This article is about the wheat/ schizophrenia connection.

Open Original Shared Link

This one discusses how wheat turns into opiods during digestion.

Open Original Shared Link

One more discusses the ways our brains react to gluten.

Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

Open Original Shared Link/

Hope this helps.