Possible New Glutie - Freaking Out

[NewGlutie11]

Ok... I am a 41 year old female. I have had stomach issues my entire life. I have had multiple tests over the years and this last week a GI suggested that I might have celiac disease. The bloodwork and stool samples have been completed and my endoscopy/colonoscopy are scheduled for Nov 14 (I had both tests done in 2007 and Celiac was never mentioned). I am also having a stomach function test in 2 weeks (GI thinks my stomach isn't functioning). Several times lately, I can eat a small amount in the morning and not eat the rest of the day due to nausea and pain, in the early evening I swear I can feel the food finally dumping from my stomach and anyone in the room hears the rumbling.

I have always had issues with diaharria -it's a joke in the family for everyone to always keep one bathroom available for me . (Been told I have IBS).

I was diagnosed with Lupus in 1993 (all related bloodwork in last several years shows Lupus is in remission - all tests normal - praise GOD).

Exploratory surgery in 1999, found that my bowel was attached to the back of my belly button and to my left ovary with scar tissue.

Gallbladder was removed in 2005 (only working at 30%).

Here are the other symptoms I've fought over the years....

- Low Iron (now taking 3 a day since my Ferritin has dropped to 5)

- Low Vitamin D (taking 100,000 units a week - VitD started at 14 - finally reached 45)

- Gas (constant belching - even when I wake up in the morning)

- Frequent Nausea

- Joint pain (I always assumed it was a Lupus flare)

- Stomach pain, grumbling

- Bloating (mostly upper stomach - every time I eat - stomach swelling)

- My foot swells (just noticed that this is a possible symptom - my left foot/ankle/leg started swelling in 2006. Dr's have sent me for ultrasound to check for blockages in artery)

- Food get stuck in throat while eating

- Feeling full with little food

- Frequent headaches/migraines

- Constant sinus issues

- Blood in stool (assumed it was hemmorroids - surgery for that in 2005 also)

- Always have lots of mucous in stool

- Sometimes floating stools

- Malodorous stools

- Dizziness (I keep thinking that I'm just having vertigo - just found out that can be another side effect)

- Issues with my eyes feeling like they are shaking (when I tell people to look they can't see anything - I've seen an Optomotrist, Opthamologist and Neurologist, received many exams including an MRI and always told nothing is wrong)

- Hair falls out

- Diaharria (multiple times a day - again, told IBS)

I know there were some other symptoms I saw that applied to me but at this moment I can't recall. And I'm aware that just because I have symptoms that doesn't mean I have celiac disease. However, the more I read, I feel more that a diagnosis is coming.

And one thing that is soooo frustrating as I read everyone's blog.... Why do we have to go years with symptoms, being told nothing is wrong, making us feel crazy/miserable, no doctor taking the time to put all of the symptoms together before we happen on a doctor that decides to test?????

All my free time is now spent looking at symptoms, diets, things to watch for. I am totally freaking out. I'm already not a great cook and now looking at all of the special things that must be done to keep you gluten free - ARGH. I know if this is my official diagnosis, it will be nice to finally feel like all of this wasn't just in my head. But I'm concerned about how hard it will be to keep to this diet.

I don't know that there is really a true question out there but I am frustrated and freaking out! Any discussions would be greatly appreciated!

NewGlutie11 (maybe)

[lucky28]

NG-

It is normal to freak out a bit at the possibility of having to go gluten free. Like you I have suffered from stomach issues since being a teenager (I'm 46 and just diagnosed in aug). The best advice I can give you is how I have done it so far-Kiss! Keep it simple silly! I'm giving myself a few months of sticking to easy stuff; rice, potatoes, rice noodles, lays potato chips etc. I have found just a few "gluten-free" products to splurge on: betty crocker brownies, kinn. english muffins and some kinda pizza(I forget the name but it was the only one available in my grocery store). I swear by my rice maker, I keep a large tupperware filled with cooked rice in the fridge at all times (who'd a thought THAT christmas present would come in so handy!!!) While I do like to cook it is like learning all over again, googling ingredients and trying to learn the basics. The advice on this forum has been a lifesaver-poke around a bit. I try not to look at it too negatively because the benefits FAR outweigh the drawbacks! Good luck!

[hazesdaze]

I am right here with you. A new glutie(maybe) myself and I feel how you feel. Very upset and tired of being sick. Scared of possibilities of something being contaminated. Still waiting on some test results myself. It is frustrating.