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Consistent Or Progressively Worse....

jajus100

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jajus100 Apprentice
jajus100
Posted

I was just wondering, before you were diagnosed, did you just continually get sicker. Or... did you have some days when you thought you were actually getting better, only for the stomach problems to come back?

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ianm Apprentice
ianm
Posted

I got progressively worse before I knew what the problem was. Fatigue and crippling brain fog were the main problem. I didn't have to many gut problems.

jerseyangel Proficient
jerseyangel
Posted

I always had a "sensitive stomach" for as far back as I remember but never sought medical treatment. In the spring of '04 (after surgery for gyno. problem) I began to have urgent, frequent D, Severe brain fog and anxiety, tingling in my face, a strange feeling in my forearms and pain in my hands. I also would sometimes wake up with swolen,red joints in my thumb. I was also dizzy and very exhausted all the time with trouble sleeping. As time went on, everything I ate went right through me. Also present were stomach pain, mouth ulcers, and eczema on my eyelid. All of these symptoms were progressive and persistant. I sought help from my GP who refered me to the Gastro. who DX me with celiac disease this past June. I'm 4+ mos. on gluten-free and dairy free and am still taking it one day at a time. I've gotten so much great advice on these boards. (From the Dr. I got an outdated list of gluten-free foods and an appt. in 6 mos.!!) I really don't think I'd have come as far as I have if I haden't found this site.

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

I knew more things made me sicker than ever before and I just figured that everyone had the same problems I did and just thought that was life. After starting the diet I was shocked at how "normal" people weren't sick everyday.

Rachel--24 Collaborator
Rachel--24
Posted

Before the diet I was progressively getting worse. The only time I'd start to get better was if I was too sick to get out of bed and eat. If I didnt eat I'd start to feel better and of course as soon as I felt good I'd eat and be sick again. Back then EVERYTHING I ate had gluten in it. I lived off gluten which is probably why the first week of the diet I went through major withdrawl. I didnt know it was withdrawl at the time...but after reading about it in "Dangerous Grains" I know its what I went through.

Guest Kalynn
Guest Kalynn
Posted
I was just wondering, before you were diagnosed, did you just continually get sicker.  Or...  did you have some days when you thought you were actually getting better, only for the stomach problems to come back?

<{POST_SNAPBACK}>

I am pre-diagnosis as well, and I'm glad you asked that question. I am currently waiting for my tests to come back. For the past four months, it seems like I have good days and bad ones. At one point, when I was feeling much better, really starting to eat well again and had gained a few pounds back, it all hit me again and I lost even more weight.

I am going gluten-free regardless of what the tests show. Up to now no doc has been able to pinpoint what ails me, so I want to know if a gluten-free diet will help. Until then, I am just thankful for the "good" days. :rolleyes:

Carriefaith Enthusiast
Carriefaith
Posted
I was just wondering, before you were diagnosed, did you just continually get sicker. Or... did you have some days when you thought you were actually getting better, only for the stomach problems to come back?
For me, the first 4-5 months on the diet were quite rough (similar to how I was before going gluten-free) and then I slowly started having some good days and some bad days. I finally started having mostly good days about 12 months into the diet.
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frenchiemama Collaborator
frenchiemama
Posted

I've always had a "sensitive" stomach, and I was very depressed as a child/adolescent.

My first really obvious symptoms started when I was about 17 or 18 (around 10 years ago), I started to have very severe stomach pains, indegestion, heartburn, nausea and difficulty eating. That kind of came and went over the past decade.

I also had very bad headaches which were pretty much constant since I was a kid.

Then 2 years ago in May of '03 I started getting DH.

In the 2 months or so right before diagnosis everything that had been fairly constant for several years started going downhill fast.

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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