Apparently I need support

[Sick, Tired, and Broken]

Hi everyone,

I came across this site to find out if celiacs become bedridden as I was. I was extremely ill for 5 years, and relatively ill the 5 before that. I've never been diagnosed with celiac, but am convinced I have it. I'm gluten free, but also realized I get very ill from corn and nearly every other grain except rice. I'm out for at least a week if I'm exposed. 

Reading that I'm not the only person going through this yo-yo experience of being exposed to something hit me like a ton of bricks. I've been so alone, so completely traumatized, so misunderstood, so out of control of my body. It's just really nice to find people that understand why I can't emotionally get over this, even though I'm now through the worst of it.

The devastation on my ability to think clearly, my relationships, feelings of safety and independence, finances, happiness, virtually every aspect of my life--it's very difficult for most to understand the extent of my trauma.

Can someone please chime in and let me know what you went through?

 

thanks.

[weluvgators]

You are not alone!  Gluten intolerance and celiac disease can affect us each in different ways, but there are many similarities amongst groups of us - maybe genetic similarities?  The fact that it is known to attack organs, and many have been implicated in different people, is just astounding to me - yet getting people to relate to its severity can be so difficult.  It seems that it can be hard to comprehend when you haven't suffered personally.  I was not bedridden when we figured things out, but there are several (and many that I have met along the way) that were bedridden at times due to this condition.  Hopefully as awareness of gluten issues grows, fewer will have to be bedridden before the gluten free recommendation and support are provided.

Sometimes the social cutoff seemed the hardest part of it all.  Just when you find yourself in need of help and support, you find it difficult to explain to others how to best help you . . . and not make you worse!  It can be very hard.  I found really wonderful help from the Super Sensitive crowd and those that have adopted a Gluten Contamination Elimination Diet - I think that is similar/same as the "Fasano" diet.  We are managing gluten issues in our family of five, so we have the benefit of having each other.  But it is hard.  There is a lot of medical stuff to sort through, and food sourcing and processing is a demanding task.  We have been at this for over 9 years, and we continually learn more.  Reaching out to others in the celiac and gluten free communities is really helpful.  I really enjoyed when I was able to meet with other gluten free people in my community too.  Look for a local support group, or find someone in your community that wants to start one!  When we lived in Illinois, we found a chiropractor and a group of her patients that was able to start a support group.  It was such a blessing!  Good luck in your journey, and thanks for reaching out to us.  My family enjoys meeting and hearing from others that can relate to our struggles!!

[ravenwoodglass]

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Welcome to the board. We understand and many have been down the same long road.

Have you had your vitamin and mineral panels run? It would be a good idea if you can. Sometimes some sublingual B12 can help with the brain fog. It is worth a try if you don't take it already.

I don't have a lot of time so will have to make this short. Do be sure to read the Newbie thread at the top of the Coping section as it has a lot of valuable info.

I hope you are feeling much better soon.

[Momma2PirateNPrincess]

Hang in there!!!! 

I've only been gluten-free for 15 days. I have no idea if I have celiac (had gluten sensitivity diagnosed via saliva which I know isn't the best way to test). I've never had many symptoms until 5 months ago when dizziness, anxiety attacks, fatigue, weight loss and insomnia hit out of nowhere. I pretty much stopped driving and going in public. After months of being in and out of the Drs office, ER and always being told it's just anxiety I found a functional dr. I'm still not doing much better and not 100% sure the issues were totally gluten related but it's still too soon to tell! I have good days and many bad. So just know you're not alone!!!  Don't give up and keep looking for answers! Sending hugs your way!!!