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2 months of symptoms

mlhmatt

By mlhmatt
in Coping with Celiac Disease

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mlhmatt Newbie
mlhmatt
Posted

I am a 27 year old male that has not been officially diagnosed as a Celiac, but after going to countless doctors for 2 years to no avail, going gluten free / casein free cleared up almost all of my symptoms that I have been plagued with since I was a child. 

When I eat gluten I get a lot of typical gastro symptoms for the first couple days. Bloating, gas, burping, cramps, but the part that is really tearing me down are the psychological effects. The number one way I know I have been glutened besides immediate bloating/burping is that I will have nightmares the night that I eat it. Nightmares so vivid that I am afraid to close my eyes because I will wake up within an hour drenched in sweat, and the process will repeat itself for remainder of the night. For the rest of the week, I am in a constant state of paranoia. I have anxiety, brain fog, negative thought patterns, anger easily and an extreme trouble focusing. It's as if I am taken over by my negative thoughts no matter how hard I try to stay positive or what I do to distract myself. After the first week I start to have periods where my brain chemistry returns to normal followed by periods of brain fog. At around 2 weeks, almost to the day, my symptoms completely go away.

Having said that, I have some how managed to consume gluten at some point during the 2 week recovery since December 24th, 2015. 5 times in total. Restaurants where I used to have safe menu choices now seem to be causing full blown reactions. I understand that it is normal to become more and more sensitive the longer you are gluten free, but it has gotten to the point where I feel if I don't make 100% of my meals at home I am running a serious risk of 2 weeks of mental anguish. Mentally, I am at my wits end. Within the past month I have made all of my meals at home except for 2. Once I ate white rice with no other ingredients at a friends house (and got glutened from CC) and last night I handled a pets gluten containing food AND washed my hands (perhaps not as thorough as I should have) and then had a reaction to a gluten-free bread that I eat almost everyday with no problem. 

I met a girl in October that I felt something for that I had never felt for anyone in years and I have slowly watched as the relationship crumbled by not being able to be myself at any point in time over the past 2 months. It's getting to the point that I am forgetting who I am as a person (not literally, but how I used to behave), having been totally consumed by negativity for 2 months. Having the pressure to be "normal" at work and in my relationship has left me depressed, as I feel helpless to make any of these situations better, until I can recover from this.

I realize that I have to take even more control over the CC and change the pets diet to a completely gluten-free source, but I am wondering if anyone has ANY coping techniques/suggestions/medications/supplements to help deal with the almost "psychosis" that affects me after I eat it. I am a single male, and thus have a very self reliant lifestyle that requires me to be on my A game as much as possible. Even if there are no suggestions, just reaching out to a community that truly understands how debilitating this can be is comforting. Thank you all.

 

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cyclinglady Grand Master
cyclinglady
Posted
6 hours ago, mlhmatt said:

I am a 27 year old male that has not been officially diagnosed as a Celiac, but after going to countless doctors for 2 years to no avail, going gluten free / casein free cleared up almost all of my symptoms that I have been plagued with since I was a child. 

When I eat gluten I get a lot of typical gastro symptoms for the first couple days. Bloating, gas, burping, cramps, but the part that is really tearing me down are the psychological effects. The number one way I know I have been glutened besides immediate bloating/burping is that I will have nightmares the night that I eat it. Nightmares so vivid that I am afraid to close my eyes because I will wake up within an hour drenched in sweat, and the process will repeat itself for remainder of the night. For the rest of the week, I am in a constant state of paranoia. I have anxiety, brain fog, negative thought patterns, anger easily and an extreme trouble focusing. It's as if I am taken over by my negative thoughts no matter how hard I try to stay positive or what I do to distract myself. After the first week I start to have periods where my brain chemistry returns to normal followed by periods of brain fog. At around 2 weeks, almost to the day, my symptoms completely go away.

Having said that, I have some how managed to consume gluten at some point during the 2 week recovery since December 24th, 2015. 5 times in total. Restaurants where I used to have safe menu choices now seem to be causing full blown reactions. I understand that it is normal to become more and more sensitive the longer you are gluten free, but it has gotten to the point where I feel if I don't make 100% of my meals at home I am running a serious risk of 2 weeks of mental anguish. Mentally, I am at my wits end. Within the past month I have made all of my meals at home except for 2. Once I ate white rice with no other ingredients at a friends house (and got glutened from CC) and last night I handled a pets gluten containing food AND washed my hands (perhaps not as thorough as I should have) and then had a reaction to a gluten-free bread that I eat almost everyday with no problem. 

I met a girl in October that I felt something for that I had never felt for anyone in years and I have slowly watched as the relationship crumbled by not being able to be myself at any point in time over the past 2 months. It's getting to the point that I am forgetting who I am as a person (not literally, but how I used to behave), having been totally consumed by negativity for 2 months. Having the pressure to be "normal" at work and in my relationship has left me depressed, as I feel helpless to make any of these situations better, until I can recover from this.

I realize that I have to take even more control over the CC and change the pets diet to a completely gluten-free source, but I am wondering if anyone has ANY coping techniques/suggestions/medications/supplements to help deal with the almost "psychosis" that affects me after I eat it. I am a single male, and thus have a very self reliant lifestyle that requires me to be on my A game as much as possible. Even if there are no suggestions, just reaching out to a community that truly understands how debilitating this can be is comforting. Thank you all.

 

Normally, I would recommend that you get tested for celiac disease, but you have been gluten free for a while (or maybe not with all your glutenings and it might be worth getting tested to see if you have antibodies in your system).  But doing a gluten challenge can be difficult:

Open Original Shared Link

You could just remain gluten free for life.  It can be done.   My husband went gluten-free per the poor advice of my allergist and his GP, "Don't eat gluten and see how you feel."  Well, it worked.  There is no way he will do a challenge.  Funny thing is that I ended up with celiac disease (officially diagnosed).  What are the odds?

Anyway, he's been gluten-free for 14 years.  He is dedicated.  He likes feeling well (me too).  So, my advice is to treat gluten as if it were rat poison.  Seriously.  

My last glutening in July resulted in shooting my antibody levels even higher than I was diagnosed.  I was sick seriously (vomiting, ab pain, anxiety, etc.) for two months.  I because lactose intolerant again, and developed hives and rashes!  Three months to recover!  

I do not eat out.  The risk is not worth it.  Will I eat out again?  Maybe.  I just probably need more time to really forget how bad I felt after my last glutening (kind of like forgetting childbirth).  In the meantime, the only place I eat out is at the grocery store (just bought a banana on the go at Walmart) and a 100% gluten-free restaurant in Tucson (hard to get there often since I do not live there!)

Good luck! 

 

mlhmatt Newbie
mlhmatt
Posted
  • Author
On February 20, 2016 at 7:56 PM, cyclinglady said:

Normally, I would recommend that you get tested for celiac disease, but you have been gluten free for a while (or maybe not with all your glutenings and it might be worth getting tested to see if you have antibodies in your system).  But doing a gluten challenge can be difficult:

Open Original Shared Link

You could just remain gluten free for life.  It can be done.   My husband went gluten-free per the poor advice of my allergist and his GP, "Don't eat gluten and see how you feel."  Well, it worked.  There is no way he will do a challenge.  Funny thing is that I ended up with celiac disease (officially diagnosed).  What are the odds?

Anyway, he's been gluten-free for 14 years.  He is dedicated.  He likes feeling well (me too).  So, my advice is to treat gluten as if it were rat poison.  Seriously.  

My last glutening in July resulted in shooting my antibody levels even higher than I was diagnosed.  I was sick seriously (vomiting, ab pain, anxiety, etc.) for two months.  I because lactose intolerant again, and developed hives and rashes!  Three months to recover!  

I do not eat out.  The risk is not worth it.  Will I eat out again?  Maybe.  I just probably need more time to really forget how bad I felt after my last glutening (kind of like forgetting childbirth).  In the meantime, the only place I eat out is at the grocery store (just bought a banana on the go at Walmart) and a 100% gluten-free restaurant in Tucson (hard to get there often since I do not live there!)

Good luck! 

 

Wow, I can only imagine how hard 3 months must have been. I am only at 2 and at my wits end. I definitely need to take the precautions with gluten as if it's poison. Just curious, what is the name of the restaurant in Tucson? Coincidentally I will be visiting next week.

cyclinglady Grand Master
cyclinglady
Posted
11 minutes ago, mlhmatt said:

Wow, I can only imagine how hard 3 months must have been. I am only at 2 and at my wits end. I definitely need to take the precautions with gluten as if it's poison. Just curious, what is the name of the restaurant in Tucson? Coincidentally I will be visiting next week.

Gourmet Girls Go Gluten Free.  100%!!!!! Located on the NW side on Oracle.  Crossroad?  Near River.  So nice to eat safely.  Yummy too!  Check out their website.  

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