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A Long Beginning.....

Posted by ohsotired, 29 June 2008 · 129 views

It's already been a long beginning, but it's about to get longer.

I'm not diagnosed celiac disease or even gluten-intolerant, but I've done enough research to suspect that one of these things is what's wrong with me. I plan on using this blog as a way to gather my thoughts in one place, maybe keep a food journal and review various gluten-free products I try, as well as, hopefully, help someone else along the way. It's a scary, lonely road (mine has been, anyway) and if I can reach out and help even one person deal with similar experiences, then this is all worth it.

The story begins.......

It was about seven years ago that this all started, I think. It may have been longer, but honestly, I can't remember that far back since my brain doesn't work like it used to.

In late 2000, I started getting upset stomachs, crazy mad gurgling (if you have this, you know how terrifyingly embarrassing it is to be in a staff meeting, have the room go quiet all of a sudden, and your stomach picks that exact moment to make a statement!), and yes, the big D. We're talking six or seven times a day. I thought, well maybe it's the powdered creamer I've been putting in my coffee.......so I weaned myself off of that gradually, but never really felt any better. I started feeling really tired all the time. Depression came and came hard. I started sleeping way too much - partly from depression I'm sure, but also because I just felt exhausted, even after sleeping 12 hours.

The depression was getting bad, so I finally went to a Dr. I swear I wasn't in that Dr's office more than five minutes before she said, "Oh it's IBS" and handed me a prescription for Zoloft. Huh?
Ok, so who am I to question an MD? Someone who had spent years going to medical school and surely knew WAY more than I did, right? So I filled the prescription for Zoloft and prayed it would help.
It seemed to help with the depression - I mean I *think* it did - I didn't really care about anything while I was on it.
I stayed on it for about a year, and after that weaned myself off of it (which was a little scary in and of itself).

By this time, my family and I had moved to a new state due to a family crisis. The stomach issues hadn't improved at all, and by this time I was actually bouncing back and forth between the big D and the big C.
But the crazy thing is, I never really realized that there was something wrong. You don't tend to spend a lot of time discussing bowel movements with family and friends, so I never realized that what I was going through wasn't normal.
Somewhere in here, I started dropping weight but didn't realize it. It wasn't until one day in summer (?) 2006 that I stepped out of the shower and stood in front of the mirror wrapped in a towel to brush my hair that I really realized - I looked like a skeleton. I could count every single bone in my chest from my collarbone down to the last rib. Upon further inspection, my hip bones jutted out where there once had been a decent amount of fatty tissue. (I've always been fairly small - 5'2" and about 120-135 lbs, always had a high metabolism, but never really fretted about my weight.) I stepped on the scale. 100 lbs. I pretty much freaked out. I hadn't weighed 100 lbs since junior high! I resolved to start eating better and put some dang meat back on my bones.

Fast forward to October 2007.
I still wasn't feeling all that great - some days were just ok, while other days were just BAD. I started having daily headaches that seemed to start at about the same time everyday - late afternoon. If I didn't catch them in time and down some ibuprofen, they'd turn into full blown migraines and nothing but a really long nap would make it go away.
One day I had this really weird dizzy spell - or at least that's the only thing I can think to call it, but it really didn't feel like dizziness at all.
It felt like there was a hive full of angry bees inside my head. Talking aggravated it. Sitting down aggravated it. Laying down on the floor aggravated it. And then it was gone. It lasted only a few minutes but it felt like an eternity.
My sister happened to be visiting and was standing right next to me when it happened and she could definitely tell something was wrong. (Maybe it had something to do with me being mid-sentence when it hit, and I just stopped talking.)
She was slated to leave to go home in a few hours, and she didn't want to leave me alone. I told her I would be fine and that it must've had something to do with blood sugar levels (even though I'd eaten breakfast that morning, when normally I'll have a cup of coffee and not eat anything until mid-morning). It happened again about thirty minutes later, only it was much shorter in duration. She left town, and I was fine the rest of the day, except that I was super tired.
The 'brain buzz' happened a total of two more times before I could get into a Dr's office - once while I was driving which scared the ever loving daylights out of me!

Finally I get in to a Dr's office, and tell her about my head aches and my 'brain buzz'. She orders some blood tests and an MRI "just to be safe" - but then proceeds to tell me that she thinks that I'm just "running on empty and you should eat better and get more sleep". The MRI showed no abnormalities. The blood tests came back "within normal range". I don't even know what all blood tests they did, but I do know that they checked for anemia and diabetes.
Ok, so everything looks normal. So I must be crazy then. There's nothing wrong with me.
The depression worsens, and now let's add some anxiety into the mix. I spend the whole day feeling anxious, over what I don't know. I can't seem to function all that well. I have lots of trouble remembering things. My stomach cramping is getting worse - not in the frequency but in the severity of the attacks.

My sister, bless her heart, has had digestive issues for years and years, and ended up having her gall bladder removed. She still suffers with some digestive issues, so that obviously didn't solve the whole problem.
She suggested to me that I get tested for Celiac's Disease. I sort of brushed it off for a while, but just recently I started doing some research on celiac disease. I found celiac.com and started reading the forums. And I finally joined.

Reading about other people's symptoms is really helping me to put some pieces together in my own story. It's made me think of things that I thought were just oddities, but I see now could be connected to one, much larger issue.
Yesterday, I started a gluten free diet to see what happens. Today, I feel pretty good. Better than I remember feeling in quite some time, anyway. So I'll keep up with this for a bit and see how it goes, realizing that if I'm going to go the doctor route again in an effort to get a diagnosis (and really, I need to, I have a daughter that deserves to know and be prepared for what may come if it's celiac disease) that I'll likely need to re-gluten myself for testing purposes.

So in a nutshell, here's the pieces of the puzzle that I'm starting to put together:
  • Lower Intestinal Stomach Cramping - sometimes to the point of not being able to move
  • Bloating
  • Diarrhea/Constipation
  • Anxiety
  • Depression
  • Mood swings and irritability (drastically worse with PMS)
  • Night Sweats
  • Stiffness in Neck and Back
  • "Brain Fog"
  • Crazy Stomach Gurgling
  • Weight Loss & Inability to Gain Weight
  • Fatigue
  • Excessive Sleep
  • Heartburn & Occasional Nausea (esp after eating things like pizza or pasta)
  • Frequent Headaches
  • "Brain Buzz" or Dizziness
  • Loss of Hearing (saw ENT in Nov '07 who said nothing was wrong)
  • Lack of Coordination, Increased Clumsiness
  • Constantly Feeling Cold
  • Loss of Libido
  • Occasional Hot Flashes
  • Muscle Cramping in feet & calves
  • Lack of Concentration
  • Itchy Skin & Scalp - no noticeable rash, but what looks like acne on upper arms, thighs, back and scalp
  • Feeling Dehydrated Often
I don't know if they're all related or not, but that's what I'm here to find out.


  • 0



Hi,

I have every single one of your symptoms except one. I haven't loss weight, in fact I have gained. I am for the most part severely constipated.

Adding more to your list

* Sjogren's
* High Blood pressure
* High Cholesterol
* Elevated liver enzymes
* Lupus symptoms
* Much depression
* Weight gain also possible as told to me by my GASTRO

Hugs

Gerri

PS: Going for Celiac biopsy September 4, 2008 - back on gluten - man am I sore
    • 0

Hi,

I have every single one of your symptoms except one. I haven't loss weight, in fact I have gained. I am for the most part severely constipated.

Adding more to your list

* Sjogren's
* High Blood pressure
* High Cholesterol
* Elevated liver enzymes
* Lupus symptoms
* Much depression
* Weight gain also possible as told to me by my GASTRO

Hugs

Gerri

PS: Going for Celiac biopsy September 4, 2008 - back on gluten - man am I sore


Gerri, thanks for your comment.
The items you added above - are those symptomes you have as well?
I wish you luck with your biopsy - please post an update when you have results!
    • 0

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