New person with confusion

[lavelle1029]

Someone please let me know if this sounds like it could be or coudn't possibly be Celiac. The only person I know with it is my 17 year old cousin, and she has it pretty severe, so I originally assumed that's how the disease was. I'm seeing that I was wrong.
I'm a 26 year old, recently married female. Here's the deal:

For a few years, I seemed to be having digestive problems. Urge to evacuate bowels very shortly after a meal. Diarrhea 75 percent of the time, Constipation 15 percent. I also felt pretty tired most of the time, but attributed that to being out of shape. These symptoms didn't seem severe, so I just ignored them.

November 2, 2004 - I got a sudden dull pain in my right lower side that wouldn't go away. First suspicion had been appendicitis but the pain remained constant, and I didn't get any fevers, so that was ruled out right away. I kind of noticed it getting worse after eating certain things, but I didn't notice any particular patterns (I've only suspected celiac VERY recently). Sometimes it got worse, sometimes it didn't. I've also been even more exhausted lately.
Since then, I have had two sonograms, a CT scan, Endoscopy with stomach biopsy (trying to find out right now what the doctor specifically tested for), Colonoscopy, and two Laparoscopies. I found out in this long process that I had Endometriosis, which was treated in the 2nd Lap. I was disappointed to find that I'm still having pain after eating some things.
I'm out of work right now (short-term disability after my surgery) and figured this would be an ideal time to really find out what's going on with me.

But before I made an appointment with my GI again, I thought I'd ask some real-life experts.

And after reading some symptoms on other pages, I guess I should mention that I've had tingling/numbness in my face and a very strange tingling in my thighs (usually after walking a bit) over the last 5 or so years.
Please tell me if I'm in the wrong place. I'm so tired of feeling bad all the time. Thanks

[Fidissimus]

Hi Lavelle,
Welcome to the board! I'm sorry you're going though such a tough time. I hope that you can figure out what's going on with you and get healthy soon! We'll try to assist you as best we can.

As far as your symptoms go, some of them sound like Celiac and some I don't know. For myself I had D a lot plus would throw up daily. My left ear would go numb or cold and tingle as well as various fingers at various times... I always thought how odd that was. But it never effected a whole limb. Oh my. Being tired (and cranky) was also pretty common for me. But you have to remember that this tricky disease effects everyone differently, which is part of the reason it's so hard to diagnose. I haven't heard of a constant pain in the abdomen, but I'm just one in a sea of celiacs. Maybe someone else can confirm that or shed more light on it at least.

On the bright side, initially they'd just run some blood work on you - so nothing too invasive. It sounds like you've gone through enough already.

You could ask your doctor to run a complete Celiac Blood Panel:

antigliadin IgA and IgG (indicates gluten sensitivity, not necessarily celiac disease)
anti-tTG and/or anti-endomysial (more specific to intestinal damage known as celiac disease)
total serum IgA (rules out IgA deficiency)
anti-reticulin IgA (a very thorough doctor will include this)

Al also recently bumped a list of Celiac symptoms on this board, check the link = Symptoms for a very comprehensive list.

Good luck and good health!
_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[WheatFreePDX]

Absolutely with your symptoms you should be screened for CD, especially because someone in your family has it-it is hereditary. Diarreah, chronic fatigue & that appendicitis pain are HUGE indicators of Celiac. Like Jen said, it's a simple blood test to screen for it now.

Good luck!
_________________
Diagnosed with celiac disease (bloodwork & biopsy). GF (again in my adult life) since March 2005.

[Fidissimus]

I think it's something like a 1 in 22 chance that you could have CD if a first degree relative has it...
_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[lavelle1029]

She's actually my first cousin's daughter (the one with Celiac; diagnosed about two years ago) but now I'm hearing that her mother (first cousin) is going to be tested for it. Oh, boy.
I've also had that tingling in my fingertips for a few years... My fingers are really thin and long (many have remarked on it) so I used to hear jokes about my circulation being bad because the blood couldn't reach all the way out to the ends of my long fingers.
Thanks for the advice, guys.
I think I'm going to go ahead and schedule an appointment.
Since this condition is more managable than some others, I really wish that I would test positive.
It sounds strange, but anyone who has been in pain for this long with all these problems will understand.

[aklap]

Hi Lavelle,

Welcome to the board!! Glad to see you are doing your own research on this.

Along with all the other sx's (short hand for symptoms), the numbness & tingling can be a couple of things...

It could be B12 deficiency. If B12 is not being absorbed this can affect nerves - and is some thing that should not be messed with. They causes of B12 defieciency are many. One biggie is malabsorption due to CD. There is a host of vit. levels that should be checked when looking for CD too. B12 is one. B12 should be checked even if CD is not checked for!!

It could be caused by gluten itself.

The neuro aspects of gluten as even less known to docs than CD itself!

What numbness & tingling maybe peripheral neuropathy - damage of the peripheral nerves (any nerves outside of the spinal cord). In 70% of the cases, no cause is ever found. It's dx'ed as Idiopathic PN. I am one of those 70%.

I had also sorts of neuro things going on before being GF. "Bee-stings" all over my body, "vibrating" muscles, LOTS of pain in my feet, numbness, tingling, creepy-crawly bug sensations. I can't say for sure what did it, but the Bee Stings, the vibrating, most of the pain have vanished. Along with going GF, I started on B12, B-complex & Omega 3 supps - this too may have played a role.

I also noticed a sizable decrease in foot pain (as weird feelings) after I reduced my dairy and watch my sugar intake. No, I dont know diabetes. I have had several blood tests concerning this.

See if you can get some testing done. If you can't get them to do a B12 check - consider taking B12. It's safe, you can't OD on it...

Good luck in your KQ (knowledge quest)!! Hope you stick around and read til you eyeballs pop out LOL!! [/i]
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[lavelle1029]

Since I was often complaining of being tired and just a general feeling of "unwell", my mother actually suggested B12
I've been taking sublingual B12 for a few months...
The pain is just too constant, and I'm still tired.
Maybe I'm taking the wrong B12? Some people say that a vitamin is a vitamin whether it's Centrum, or Pathmark brand.
What do you think?

[Kathie]

I think a vitamin isn't a vitamin if you have celiac disease because some of them have gluten in them so the benefit you are trying to achieve is cancelled out by the gluten. Besides which if you aren't on a gluten free diet you probably won't absorb them anyway.

I also remember constant pain in my stomach and it would get so everytime I ate I would hurt so bad that I just wanted to quit eating all together and starve to death. Fortunately I didn't give in and now I am a happy, happy camper again, most of the time, just like normal people are. (Now Al, I see you are on a funny kick today, so I will own up to it in print, I KNOW I AM NOT NORMAL! BUT I'M LOTS OF FUN)

I also had a negative endoscopy in the beginning because they were looking for chron's and not CD so they didn't take enough and big enough biopsies.

Good Luck and welcome to the group.
_________________
CD by Biopsy 3/25/88

[lavelle1029]

You know, because I'm not used to looking out for gluten, I didn't even consider that the vitamin might have a gluten ingredient in it. I'm going to get the bottle right now and look online.
Here's what I just found:
My brand of B12 is 'Rexall' which is on this short list online (link below) for gluten-free vitamins...good to know.

http://www.penny.ca/Pharma.htm