Severe symptoms

[Gerard S]

Hi, I've written this post 3 times now and then deleted it so I'm just going to come out with it...

I was diagnosed with Coeliac 10 years ago, add that to the 7 years it took my doctors to come up with the diagnosis means I've been living with this horrible disease for 17 years.

I'm very careful in what I eat and thankfully have a wife and kids in their teens and twenties who keep a good eye on me.

That been said, I make a mistake 3-4 times a year, and I suffer terribly.

Approximately 2-3 hours after making the mistake I feel myself go very weak and I head to the bathroom.

My body goes into a shock like state, trembling and freezing cold. I will lie curled up on the floor of a hot shower for 5-6 hours, unable to move, crying out like a baby, feeling like I'm going to die. Once the poison is out of my body I will sleep for 24 hours and finally be able to get out of bed a further 24 hours later.

I'm 58 years old  and know this will be the death of me, my body cannot continue to take this battering.

Above all is the worry and stress this is putting on my family, the embarrassment I must be causing my 18 year old son who has to help his mother drag me to my feet while I'm standing there like a whimpering child is killing me and the mess that's left that my poor wife has to clear up is heartbreaking. 

I don't really know why I'm sharing this to be honest, it's not something I've ever done before.

 

 

 

 

 

 

[trents]

31 minutes ago, Gerard S said:

Hi, I've written this post 3 times now and then deleted it so I'm just going to come out with it...

I was diagnosed with Coeliac 10 years ago, add that to the 7 years it took my doctors to come up with the diagnosis means I've been living with this horrible disease for 17 years.

I'm very careful in what I eat and thankfully have a wife and kids in their teens and twenties who keep a good eye on me.

That been said, I make a mistake 3-4 times a year, and I suffer terribly.

Approximately 2-3 hours after making the mistake I feel myself go very weak and I head to the bathroom.

My body goes into a shock like state, trembling and freezing cold. I will lie curled up on the floor of a hot shower for 5-6 hours, unable to move, crying out like a baby, feeling like I'm going to die. Once the poison is out of my body I will sleep for 24 hours and finally be able to get out of bed a further 24 hours later.

I'm 58 years old  and know this will be the death of me, my body cannot continue to take this battering.

Above all is the worry and stress this is putting on my family, the embarrassment I must be causing my 18 year old son who has to help his mother drag me to my feet while I'm standing there like a whimpering child is killing me and the mess that's left that my poor wife has to clear up is heartbreaking. 

I don't really know why I'm sharing this to be honest, it's not something I've ever done before.

 

 

 

 

 

 

Are these "mistakes" intentional indulgences?

[Gerard S]

1 minute ago, trents said:

Are these "mistakes" intentional indulgences?

Alway by mistake.

 

[trents]

Well, as embarrassing as it is, at least your 18 year-old son will take celiac disease seriously if he ever develops it. But your reaction sounds a lot like mine when I get glutened. Intractable vomiting and excruciating abdominal cramping for 3 hours followed by several hours of diarrhea and being wiped out for 24 hours. During the cramping, I tool am laying in the floor curled up in a ball.

[Gerard S]

Ye I hear a lot of people talking about this 'cramping' not something I tend to get. Uncontrolable shaking, freezing cold sweats, no control over my body movements and certainly no control of my motions.

[Kate333]

I would suggest updated TTG/IGA blood test to assess the current level of gluten antibodies, if any, in your system.  If the blood test levels are normal, chances are you are ingesting something other than gluten something other than gluten is causing your sudden, severe symptoms.    If your G antibodies are abnormal, high, you are definitely getting G exposure. 

Also, your comment about 3-4 "mistakes" a year is telling (that would = 30-40+ gluten exposures in the decade since your diagnosis).  That seems like an unusually high number for "accidental" G ingestion, and an indication that you need to re-evaluate and strengthen your (and families') gluten-free food buying/prep, shopping, and eating habits to protect yourself from future "accidents".  

[Kate333]

Also, many of your comments indicate classic severe anxiety/panic attack/depression symptoms.  I have found the anxietycentre.com website very useful free resource as it explains in detail how long-term, severe stress negatively affects the body, including triggering acute and chronic GI and nervous system symptoms.  Perhaps counseling and/or a low-dose anti-anxiety/depressant med would help.

 

[knitty kitty]

@Gerard S,

You said "My body goes into a shock like state, trembling and freezing cold..." And... "Uncontrolable shaking, freezing cold sweats, no control over my body movements and certainly no control of my motions."

My blood glucose levels can plummet after exposure to gluten causing those symptoms.  I was wondering if you might have low blood sugar during those times.  Perhaps honey would help.  

Diabetes can occur with Celiac Disease.  As long as I stick to my gluten free Autoimmune Protocol Paleo diet, I'm fine, but gluten exposure makes my blood sugar levels drop and rise unpredictably and I end up feeling like a soggy tissue.    

Hope you feel better.

[RMJ]

I’m glad you were able to share this.  We’re here to try to help you.

The molecular basis of one response to gluten in those with celiac disease is cytokine release.  An overabundance of cytokines can explain the symptoms you experience. 

How do you determine that you’ve made a mistake and ingested gluten?  I ask because if you figure it out shortly after ingesting it you could try taking something like GliadinX to degrade the gluten in your stomach before it harms you.

If you don’t know until you experience those horrible symptoms, then I agree that you need to figure out how not to make such mistakes.  Is there something in common in these situations? For example, is it always after eating out?  Or does it happen after eating at home, in which case a 100% gluten free household may be the answer?

I hope you are able to find some answers.

[Mari]

On 4/19/2022 at 1:19 PM, Gerard S said:

Hi Gerard - I hope that you will read my input after reading the messages about anxiety disorders. Of course you are anxious but the situation is that Celiacs is a complex auto immune problem. We are diagnosed because we have one main Celiac gene or sometimes 2 main Celiac genes. It is also known that Celiacs is a multi genetic problem. The two main Celiac genes, DQ2 and DQ8 are diagnostic (along with other tests) but there are many other genes that are involved. The last time I looked several years ago there were about 27 genes that had been linked to Celiacs. I ran my genealogy DNA raw data file through Promethease.com and found that I had inherited 14 of these genes besides a DQ8 Main Celiac gene and a DQ6 that my original lab report noted made the Celiac symptoms worse. With all that going on and interacting in our bodies the anxiety many of us feel may be a product of the situation rather than the cause of it. 

One way that I protect myself is any time I may have been glutened I take at least one capsule of an anti gliadin enzyme while I am eating. The one I use is advertised on this forum. If I eat away from home I carry the capsules with me. When I first started I took one or two with every meal then found I could skip them as I learned to trust different foods as being gluten free. 

If this type of approach keeps you from having these episodes you have described then that is good. I hope so. If not you can read some of the other comments and work with your health care provider to find other causes of your episodes. 

 

 

On 4/19/2022 at 1:19 PM, Gerard S said:

 

 

 

 

Hi, I've written this post 3 times now and then deleted it so I'm just going to come out with it...

I was diagnosed with Coeliac 10 years ago, add that to the 7 years it took my doctors to come up with the diagnosis means I've been living with this horrible disease for 17 years.

I'm very careful in what I eat and thankfully have a wife and kids in their teens and twenties who keep a good eye on me.

That been said, I make a mistake 3-4 times a year, and I suffer terribly.

Approximately 2-3 hours after making the mistake I feel myself go very weak and I head to the bathroom.

My body goes into a shock like state, trembling and freezing cold. I will lie curled up on the floor of a hot shower for 5-6 hours, unable to move, crying out like a baby, feeling like I'm going to die. Once the poison is out of my body I will sleep for 24 hours and finally be able to get out of bed a further 24 hours later.

I'm 58 years old  and know this will be the death of me, my body cannot continue to take this battering.

Above all is the worry and stress this is putting on my family, the embarrassment I must be causing my 18 year old son who has to help his mother drag me to my feet while I'm standing there like a whimpering child is killing me and the mess that's left that my poor wife has to clear up is heartbreaking. 

I don't really know why I'm sharing this to be honest, it's not something I've ever done before.

 

 

 

 

 

 

 

[Gerard S]

Many thanks to you all for your concerns and help. 

Bit surprised that some feel 3-4 mistakes a year is a lot to be honest. I try to live a normal life, I go to some restaurants with family and friends that are not gluten-free and while all cater for people who suffer from coeliac, you have to accept that sometimes mistakes are made. 

Yes, at home the whole household could go gluten-free, but in all honesty I wouldn't wish some of the food we eat on an enemy never the family.

Very interested to read about Gliadin X, have people actually tried this product? Does it work?

Apologies for not replying individually, social media and the likes not really my thing but I  really do appreciate the responses.

[Mari]

5 hours ago, Gerard S said:

Hi Gerard - GliadinX works well for me. I need to take it while eating so the enzyme is mixed well with the food in my stomach before it is passed into the small intestine where the auto immune reactions occur. Pharmacies also carry other brands of anti gluten enzymes.

I had some further thoughts about your episodes and began to wonder if you could have more gluten exposure than you are aware of. I have read that some men don't have as strong reactions to gluten as women. Your family is not gluten free so you could be getting minute amounts of gluten but you are not noticing any reaction. But your body is aware of this and may be reacting at a low level. If you notice any small reaction or discomfort you might think that this is how you are normally and not be concerned about it. Then you eat something with a larger amount of gluten and your immune system reacts vigorusly.

  Although you may not need more testing you could go to Enterolab.com https://www.enterolab.com . Do check this out. Lots of information there. Scott Adams has written several articles about Enterolab that you can access on this site.

Good Luck!