Greetings...newbie Here!

[Guest cbphl]

Hello-

I'm fortunate to have happened upon this forum and have been lurking for the past 2-months, since my positive Celiac Diagnosis.

Background: Approximately 8-months ago I began a quest to figure out what the hell was wrong with me -- which, to my knowledge, was mostly cognitive and mental health related. The primary issues that I had, were unrelenting anxiety, very poor long-term memory, occasional brain fog, fatigue and the inability to attend to / concentrate on most anything for any meaningful length of time. So, contrary to friends and family saying you're fine, probably a bit stressed, I had a neuropsych battery conducted. I'm 37 and have always felt, to varying degrees, the symptoms above...but now I felt like I really need to consult specialists, read/research and basically do whatever I needed to do to identify the condition(s) responsible for the symptoms above. The neuropsych battery indicated an anxiety (NOS) and dsythymia diagnosis...no great surprise. Depression had never been an issue for me, but I recently left my job and was unsure of my next career choice, so, ok, this made sense. I tend to hit a wall at year 5 or so with past professions. Unfortunately, for me, they all seem to get increasingly mundane. It's partly the line of work I've chosen in the past, but also me...and now, I understand, possibly a by-product of Celiac...hmm, interesting.

In tandem, I consulted an ENT specialist, which was almost secondary to the other physical/cognitive issues. Beginning in graduate school, 10-years ago, I've had a sensation in my throat, as if a piece of corn is stuck. The original diagnosis was esophageal spasms. The ENT this go-round however thought that I had GERD...which aside from the described sensation, didn't produce any other sensations. Thankfully, he recommended that I see a GI doc as well. That doc suspected Celiac, performed an Upper Endoscopy and Colonoscopy and voila...a sessile polyp was found/removed and Celiac was diagnosed. Fast forward 2-months, and, to the best of my knowledge, I have been gluten-free. My anxiety and headaches are definitely diminished, but I probably feel more nauseous now than I did before the dietary change. I recognize that there may be some other intolerances that I'll need to manage. I also began taken a stimulant, Adderall XR, for the first time in my life. The cognitive issues had become unmanageable. Admittedly, the Adderall has been very calming, but I think that it may be upsetting my tummy and evidently, should not be taken with a PPI, like Nexium, Prevacid, etc. Can't win!

So, there's my story. I'd be curious to hear of other's stories, shared symptoms and any steps I should be taking to best manage my health? Although I'm quite thankful that my GI doc diagnosed Celiac, he basically gave me a pat on the back, told me to research the disease, follow a gluten-free diet and I should be fine. I'm actually going back to see his partner next week, because I'm sure there's plenty else that I could/should be doing in order to be as healthy as can be. If I'm not asking too much, I'd like to live a long and pain-free life!

[missceliac2010]

So, there's my story. I'd be curious to hear of other's stories, shared symptoms and any steps I should be taking to best manage my health? Although I'm quite thankful that my GI doc diagnosed Celiac, he basically gave me a pat on the back, told me to research the disease, follow a gluten-free diet and I should be fine. I'm actually going back to see his partner next week, because I'm sure there's plenty else that I could/should be doing in order to be as healthy as can be. If I'm not asking too much, I'd like to live a long and pain-free life!

Welcome and congrats on heading down the road to better health! I too had a lot of 'mental' symptoms. I was a manic depressive. Highs were high, lows were low. I was told I was bi-polar, had an anxiety disorder, and suffered from depression. I was on a myriad of pills including prozac and xanax. I started to really feel out of control after my last hospital admittance. I had to go in because I was so sick I could no longer hold down just plain water. I was vomiting, in extreme pain, my tummy was so distended I appeared to be about 4 months pregnant, and I was a lunatic! The whole time I was in there, I felt out of control mentally. I hated everyone. I hated the doctors, nurses, my mother, my boyfriend....tried to rip the IV out and walk out twice... I mean, I was losing it! I knew I was acting nuts, but I couldn't stop myself. Very scary and strange feeling...

Anyway, my GI doc who performed an upper GI with biopsies and blood test for celiac while admitted said that last year he had performed another upper Gi (I was also in the hospital with unexplained symptoms, but that time I ended up having my gall bladder out) my biopsy results showed "borderline Celiac Disease". I never knew about the results, because once I leave the hospital, my insurance won't pay for me to see that particular GI doctor. So I left the hospital this time with the order to try a gluten-free diet.

(BTW, my biopsies and blood work were both negative for Celiac, but through a long talk with my primary doctor, being on these boards and living life gluten-free, I have diagnosed myself with Celiac! I have researched those tests they do, and most admit they are not sensitive enough, and often give out false negatives. They require the patient to be very sick and/or the GI doc to be very lucky in where he grabs his biopsies from in your GI tract. I never was able to talk to the GI doc I like so much that I can only see in the hospital regarding the results, but with my regular doc's blessing, I am living life as if I have Celiac Disease.)

Once I started (actually my mother and BF started to do research while I was still "out" from the procedure), I realized that I was a classic celiac!! I had almost every symptom of Celiac disease! After going gluten free for over a month now, I feel back in control of my body! I am not taking the as needed xanax anymore, and I am seeing my doctor next week about weening off of the prozac. I'm me again! YAY! Having the psychological symptoms go away for the most part has been the best! Feeling crazy and out of it and not in control of your body is a very scary thing. I was considering suicide on an almost daily basis! Now, I am optimistic and ready to face life again, even if it's a less than perfect life! LOL!

Good luck to you, and I hope you notice the extreme changes that I did after going gluten-free!

[Guest cbphl]

Hi missceliac2010 -- thx for the response. I'm so sorry to hear of your difficulties. It's supportive to know that others have shared similar experiences with the disease. Celiac appears to be particularly insidious, in that it can manifest in a million-in-one ways...and because of that, is rarely diagnosed. I'm fortunate to have not gotten to the point of sickness that some of the folks on this forum have gotten to, but I certainly was starting to fear the mental health and cognitive issues I had mentioned. And, the daily nausea has not been fun.

I'm considering a career change and frankly, was concerned not only about my ability to fluidly recall large bodies of information, but also my bodies ability to manage the stress of graduate school...not to mention work fatigue. Anyhow, happy to hear that you're feeling better. The forum can be a bit daunting, in that I've read many depressive stories associated with the disease. I suspect that folks that have made a full/near-full recovery probably are lurking/posting, but if you are...I'd love to hear success stories!!