Suspect Celiac Or Non-Celiac Gluten Intolerance

[sforce]

Hi there,

This may actually be a bad time for me to write this since I just ate a big ole gluteny sandwich and feel my ability to think slipping away. Bleck.

I actually first started doing research about Celiac a few months ago for my brother. He has Cerebral Palsy, and was diagnosed with diverticulosis after losing four units of blood one weekend. His CP is affecting him more and more as he gets older, and I had to change his diet to nothing but Ensure about a year ago. He hasn't had any problems with the diverticulosis since switching [Ensure and the cheap stuff is gluten free...but y'all probably knew that. ]

Anyway, as I read about it, I realized that I have had a lot of the symptoms, too. I didn't want to try the gluten free diet because it sounded like a royal pain in the butt, so I spent some time in denial and continued trying to figure out a way to alleviate my own symptoms.

Here's a list of my symptoms, starting from childhood.

I never had much energy growing up. Didn't like to go outside or run. Couldn't handle extreme temperatures. I was always the slowest runner in my class. As in, everyone would be finished running lines and I had another entire length [or two] to run. I just didn't have enough energy to make myself go faster, you know?

I always tended toward constipation.

Couldn't concentrate on school work. I daydreamed a lot.

Major bags under my eyes. I always felt and looked exhausted. Was always underweight. I'm average height, though.

Once I started my period, they were always irregular and extremely heavy and painful.

Fast forward to about age 20.

Started having constant muscle aches [in addition to the other stuff]

When I got pregnant for the first time, I had horrible nausea and vomiting, plus my heart rate went through the roof. At one point, before they finally decided to put me on medicine, it was running 160 beats per minute with spikes up to 180 when I was stressed from having to deal with stupid doctors. No idea if that's a gluten thing, but I've noticed that my heart rate goes up after I've eaten a lot of gluten now [not pregnant right now, just getting old].

I never had any miscarriages that I know of, and I've been blessed with three kids, but during the time I was having them, I would average two periods a year.

Some doctor somewhere finally diagnosed me with fibromyalgia about twelve years ago, right after my first child was born.

A few years ago, I started having a lot of joint pain. Went to a rheumatologist and tested for RA. Negative [i've never yet had a blood test that was abnormal.

The muscle pains increased to the point where I feel like I've got a killer case of the flu all the time, and the joint pains come and go, but it's usually my fingers, wrists, elbows, knees, ankles and toes on both sides and it lasts a week or two at a time.

What finally made me bite the bullet and accept that I might be dealing with gluten intolerance is when I mysteriously started feeling better in October 2010. I had started the new fibro drug, Savella, and my husband and I decided to start a fitness program.

The first two weeks of the program were an induction of sorts, and during that time, we went extremely low-carb. I thought it was the new medicine that was helping me so much. I had energy for the first time in years! The downside was, the low-carb diet made me so freakin' hungry I was eating every 1.5-2 hours. And I was starving!

Low carb is supposed to curb your appetite, and there I was, eating everything I could get my hands on that was within my diet parameters.

I finally started eating other stuff because the hunger was driving me nuts, and it wasn't long before my energy started slipping away again. I ended up having to stop the Savella because I thought it was causing an increase in my blood pressure and heart rate [this was after I'd gone back to a regular diet] and I was having a LOT of problems with the dreaded D. To the point I couldn't leave the house. That, plus nausea that wouldn't go away...I finally stopped it.

Some of my symptoms lessened after I stopped the meds, but the D didn't go anywhere. That's when I decided to try the GFD on purpose. Within two days, my D was gone. I didn't do a very good job staying gluten free during that time, because we ate out a lot and I ended up getting glutened about every three days or so.

Then I started reading on here, and decided that if I was going to be tested, I needed to start eating gluten again before I screwed up my bloodwork, [on the off chance that I'm actually going to show positive. I have my doubts, just becuase it seems to be my lot in life never to get a concrete, paper documented diagnosis for anything. They never figured out why my heart rate went up when I was pregnant, even after being tested for almost everything under the sun...but I had the tachycardia for all three pregnancies].

In spite of knowing my perverse tendency for having normal blood tests, I do have three kids, all of whom exhibit symptoms that could be either Celiac or gluten intolerance, and both of my parents have symptoms as well [in fact, I practically don't have a family member on the planet who doesn't have SOME kind of undiagnosable, off the wall, yummy weirdness of autoimmunity going on somewhere...and no one's ever been tested for Celiac, let alone diagnosed].

So, after two weeks of being gluten free, and noticing an improvement in spite of all the accidental glutening that happened, I decided that I needed to start eating it again for blood test purposes. Been miserable ever since. Bleck.

My doctor has been sick this week, but come Monday, I'm calling her to see if she'll run a Celiac panel. I probably won't mess with the biopsy, regardless. If it wasn't for my family, I'd just make us all gluten free and call it good, but if we do have Celiac, they need to know so they're armed with the knowledge when they leave home. Not only that, but my parents won't even consider it unless I have a concrete diagnosis.

If I test negative, I'm going to make my house gluten-free anyway, and I'm going to try my kids on it and see if their symptoms improve, too. I won't let the piece of paper stop me from feeling better. I just feel like if I can get a diagnosis, I can tell my family that we have known Celiac in our family now, and they should get tested.

That's my plan, anyway

Does this sound reasonable to you? I know I'm sensitive to gluten at the very least, but now, after eating my sandwich an hour ago, I'm feeling really yucky, and I start to wonder if it's worth making myself sick on purpose. It should only be for a week or two, but man. This sucks.

Sorry this is so long. I'm really glad to have stumbled upon this forum. Every time I've googled something related to Celiac disease, something from here pops up within the first ten results. You guys help people without even realizing it. Thank you for reading!