Celiac or something else?

[Guest]

Hello everyone. I am new to this whole thing.

Well, I've been sick almost everyday for the last year, but have had problems my whole life with indigestion and panic attacks (on and off).

My current symptoms come and go, but there is at least one thing there every day:

-Tingling of hands/legs/feet.
-Painful knees-especially when sitting too long
-Painful muscles in legs
-Black and blue marks on legs
-Heartburn
-Back pains (all over at different times- right now, middle left side, sometimes hurts to touch)
-Sporadic huge flares of muscle pains in arms and legs -one time I could barley life my arms above my shoulders.
-chronic constipation
-sometimes diarreha
-foul gas
-BLOATED A LOT
-Painful cramps, when bloated
-Migrane headaches- mostly always there, and only hurts on left side of my head when I touch my scalp
-Late menstural cycle, and lighter
-sometimes floating stools, sometimes hard and makes me bleed, sometimes only "pieces", sometimes mucos
-Insomnia
-easily cold hands and feet, turn white almost purple sometimes
-fatigue/out of it/

So, that's a lot huh? But it's not usually there all at once, only a few times (about 4) I had major flare ups where I couldn't do anything but stay in bed or transfer to sofa.

Anyway, I was off of gluten (except hidden things I didn't know about) for about 3 months. IN that, I felt better overall, but would get things once in a while, A LOT LESS THAN NOW. I was tested by an allergist for celiac, and they came back negative; then I found out you have to really be eating it for it to be accurate.

I have been to numerous doctors. Last one, a rheumatologist who found nothing but a positive ANA test. She didn't test for celiac, said my GI had to.

I have a family history of Crohns disease, Colitis, and 3 people with diabetes. (2 aunts and grandma).

So, now I am back on gluten and have a GI appoint. in a week. I have been completely back on gluten for about 1 and a half months. I also just bought a test from enterolab which I will be sending in when I can go "number 2" again.

I was diagnosed with IBS about 6 years ago, with mostly C, but alternating. But no tests were taken. Then I went to GI doc. last year who wouldn't test me for Celiac because I am 100% Polish and have not lost weight...hmm? He did upper GI and small bowel series and found nothing. He also told me not to change my food habbits because "sometimes things happen and it has nothing to do with food." Well, I did anyway, and noticed some changes, but like I said, I would get major flare ups every couple of weeks. And these days, I feel weird everyday!

Anyway, if anyone could help me, I am desparate!!!!!! Does this sound like Celiac to anyone? Can Celiacs symptoms constantly change? Can some and come and go and then come back? Or are they always there, all day while consuming gluten? What info. do you have on enterolab that may help? Could it be anything else that may be similar? Has anyone had similar problems? Please tell me I'm not crazy!? Sometimes, I feel like a 90 year old woman and I am only 21!

[Noatak]

It certainly sounds like Celiac's could be your problem but you really need to get tested. I have some good news for you regarding that also. There is now a gene test that can be done that will detect the nasty gene that causes people to have Celiac's. It only requires a doctor to swab your cheek, just like DNA testing is done. It is very new so you need to find a doctor that is familiar with this test. If the gene is present, you have Celiac's and it could rear it's ugly head at any time in your life. If it's not present, you absolutley do not have Celiac's, as it's a genetic disease. So forget an endoscopy or the bloodwork as this new test is easy, non-invasive and totally accurate!

As far as your other questions go, it should not take very long for your symptoms to go away, once you eliminate gluten from your diet. It only took 3 days for me to know I had it....figured it our by myself, without a doctor. I then had the bloodwork done and it was flammingly positive. Luckily, I am not that sensitive and if a bit of gluten slips past the guard, it takes about 2-3 days before I feel a little under the weather. I only have a total blow-out if I eat a lot of gluten. Everyone is different though so don't rely on what one person's experience is.

Do not despair about this....it's not all that bad....really. There are many sources for recipes and gluten free food so you don't have to feel deprived. Plus, many, many foods don't contain gluten anyway so don't feel like you have to subsist on rice crackers for dessert! And if a doctor tells you that you don't have it because you're not underweight, you need to find another doctor. That's wrong. I was one of the underweight ones but a woman I know is overweight and she has it also...that is not always the case. This disease is so weird....people can have many different symptoms but it's Celiac's nontheless. Most of the time, when you have GI problems, food is the culprit. If your symptoms don't totally subside after going gluten free, you may also be lactose intolerant or have another food allergy on top of that. Get tested and good luck!

[Guest]

HI NYCKali,

Thanks for stopping by. I see you posted at BT too...you're in good hands there too


I wish you well!

Al

[aklap]

That was me
_________________
Al

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