Gluten Challenge Emotional Mess, is this normal?

[mwragg45]

Hi,

I am going in for a biopsy on Monday. The last 6 weeks of re-introducing so much gluten has turned me into a nervous mess with now daily panic attacks, rage, anxiety, depression. It's gotten so worse my partner has broken up with me 3 days before the procedure even though he knows things only got this bad during the gluten-challenge. I was fine without gluten before. He was supposed to bring me to the hospital on monday and drive me home after the sedation. I already had a positive blood test for transglutaminase-6 igg which is known to attack the brain and central nervous system, the biopsy is supposed to find out if I have cealiacs after some blood markers as in additional nuerological markers I have also the gastrointestinal ones too.

I guess I'm devastated looking for support and if anybody-else experienced the emotional turmoil.

Thank you,

 

Moni

[cristiana]

Hi Moni

Firstly, welcome to the forum, but I'm so sorry you are going through the mill at the moment. 

Severe anxiety was definitely one of the symptoms I experienced and this isn't uncommon.  It was absolutely awful - I really do sympathise.  But I can tell you that it was temporary and gradually subsided.  

There may be some things you can do to help you right now.  Have you had any blood tests to see if you have B12 or iron deficiencies?  If not, I'd recommend it as B12 and iron deficiencies can cause some of the symptoms you describe.   I had borderline B12 a few months before my diagnosis, and was actually very anaemic. 

I found B12 supplements incredibly beneficial in combating anxiety, even though my levels were technically borderline, "British normal"  would be considered a deficiency in some countries.   Be careful though with supplementing iron without medical supervision as too much in the system can be dangerous.  I also found magnesium supplements really helpful - either taken in tablet form,  or in a bath - a 20 minutes soak in warm water with a fistful of Epsom salts.

I also found a couple of books helpful. Dr Steve Llardi's The Depression Cure was one. Lots of advice that you can put into practice straight away -  natural ways to improve our mental health through physical exercise, omega 3, natural sunlight, sleep, social connectedness, meaningful engaged activity.   For anxiety, Paul David's book At Last a Life.  But if you really are struggling please do talk to your GP, you may find medication helpful in the short term.

It is really tough that you have also had to contend with splitting up with your partner at this time. Is there anyone else that can give you some emotional support?  

When I was first diagnosed  my family were quite young at the time and my husband was travelling a lot and I just needed someone to listen, so I actually paid for some counselling through an accredited counsellor.    Even though Covid has made face to face difficult, I know a lot of counsellors are doing zoom calls at the moment.

But hopefully you will get loads of support here too.  

Take good care,

Cristiana 

 

 

[Scott Adams]

Hi Moni, welcome to the forum!

Going the gluten challenge route to get a formal diagnosis can be a very difficult choice, but it is your choice to make, and it sounds like you are very close to the end point, getting an endoscopy to confirm celiac disease. You may already know this, but a negative biopsy would not exclude gluten sensitivity, so a gluten-free diet may be the best path for you, given the symptoms you've described.

You probably also know that most of your symptoms will go away with time, once you are back on a gluten-free diet, including the panic attacks and anxiety.

As for your boyfriend, and of course not knowing much more than what you've shared here, but it does sound to me like he's not being very supportive of your decision to get a formal diagnosis, and perhaps it's important that you found this out as well. There are many more serious things in the future that would require a lot more support and understanding from his side than a six week gluten challenge...trust me.

[mwragg45]

  On 4/14/2021 at 7:29 PM, Scott Adams said:

Hi Moni, welcome to the forum!

Going the gluten challenge route to get a formal diagnosis can be a very difficult choice, but it is your choice to make, and it sounds like you are very close to the end point, getting an endoscopy to confirm celiac disease. You may already know this, but a negative biopsy would not exclude gluten sensitivity, so a gluten-free diet may be the best path for you, given the symptoms you've described.

You probably also know that most of your symptoms will go away with time, once you are back on a gluten-free diet, including the panic attacks and anxiety.

As for your boyfriend, and of course not knowing much more than what you've shared here, but it does sound to me like he's not being very supportive of your decision to get a formal diagnosis, and perhaps it's important that you found this out as well. There are many more serious things in the future that would require a lot more support and understanding from his side than a six week gluten challenge...trust me.

Expand Quote  

Hi Scott,

yes, i wanted to get a final diagnosis but I didn't realise it would be this hard, they also had to delay my endoscopy which meant I've had to do 8 weeks instead 6 now. 

In relation to the boyfriend, you are very right! I hadn't even thought about it like that to be honest. If he cannot be there during a gluten challenge then he's not there for life. He always speaks about wanting a relation though "thick and thin" and yet he left exaclty when things went wrong (with my health & anxiety). 

Thanks x

[mwragg45]

  On 4/14/2021 at 5:15 PM, cristiana said:

Hi Moni

Firstly, welcome to the forum, but I'm so sorry you are going through the mill at the moment. 

Severe anxiety was definitely one of the symptoms I experienced and this isn't uncommon.  It was absolutely awful - I really do sympathise.  But I can tell you that it was temporary and gradually subsided.  

There may be some things you can do to help you right now.  Have you had any blood tests to see if you have B12 or iron deficiencies?  If not, I'd recommend it as B12 and iron deficiencies can cause some of the symptoms you describe.   I had borderline B12 a few months before my diagnosis, and was actually very anaemic. 

I found B12 supplements incredibly beneficial in combating anxiety, even though my levels were technically borderline, "British normal"  would be considered a deficiency in some countries.   Be careful though with supplementing iron without medical supervision as too much in the system can be dangerous.  I also found magnesium supplements really helpful - either taken in tablet form,  or in a bath - a 20 minutes soak in warm water with a fistful of Epsom salts.

I also found a couple of books helpful. Dr Steve Llardi's The Depression Cure was one. Lots of advice that you can put into practice straight away -  natural ways to improve our mental health through physical exercise, omega 3, natural sunlight, sleep, social connectedness, meaningful engaged activity.   For anxiety, Paul David's book At Last a Life.  But if you really are struggling please do talk to your GP, you may find medication helpful in the short term.

It is really tough that you have also had to contend with splitting up with your partner at this time. Is there anyone else that can give you some emotional support?  

When I was first diagnosed  my family were quite young at the time and my husband was travelling a lot and I just needed someone to listen, so I actually paid for some counselling through an accredited counsellor.    Even though Covid has made face to face difficult, I know a lot of counsellors are doing zoom calls at the moment.

But hopefully you will get loads of support here too.  

Take good care,

Cristiana 

 

 

Expand Quote  

Hi Cristiana,

 

thank for you all the info, I do regularly take b12 vits but on the iron front you are right, I have tested slightly below before even though I eat a healthy diet of leafy greens, meats etc.

I am going to get counselling as I only moved to the UK a few years ago (one of which I've spent in lockdown) so my support network isn't as big and good as I'd like it to be right now when I'm struggling.

I have been prescribed some anxiety medication, they help sometimes but the anxiety is still very bad.

I will look into the books you mentioned, thanks for the advice  

x

[Scott Adams]

That's really bad that they had to delay your endoscopy. Can you get a repeat blood panel done now? In the UK they are diagnosing celiac disease without a biopsy if you're results are 10x the cut off level for celiac disease. This might be a possible way to shorten your time on your gluten challenge.

[cristiana]

  On 4/14/2021 at 8:07 PM, mwragg45 said:

Hi Cristiana,

 

thank for you all the info, I do regularly take b12 vits but on the iron front you are right, I have tested slightly below before even though I eat a healthy diet of leafy greens, meats etc.

I am going to get counselling as I only moved to the UK a few years ago (one of which I've spent in lockdown) so my support network isn't as big and good as I'd like it to be right now when I'm struggling.

I have been prescribed some anxiety medication, they help sometimes but the anxiety is still very bad.

I will look into the books you mentioned, thanks for the advice  

x

Expand Quote  

Hi Moni

Iron deficiency causes all manner of issues.   Make sure your GP/consultant monitors this because once you are supplementing you want to make sure your levels aren't getting too high.  I have a review every time I see my consultant (about 9-12 months).

Paul David has a website which you can have a look at.  I remember doing so while I was waiting for my book to arrive in the post, and I found that even the website  was helpful.  It's worth bearing in mind that anxiety and depression take time to mend - try not to think too far head.  One day at a time.🤗

Cristiana  

[cristiana]

Moni

I used a UK accredited counsellor using this site directory.  She was excellent.  Having a safe place to talk is so important.  I knew I was getting better when I got bored with going!😊

https://www.bacp.co.uk/search/Therapists

C.