Symptoms - Should I Get Tested? Tired Of Being Told "no"

[missenorita]

A friend's daughter was just recently diagnosed with Celiac Disease and the symptoms were hauntingly similar. I'm hoping someone will look at my symptoms and tell me if it's worth getting tested. I just don't want to be told "No" again and feel like a crazy person who's making up symptoms to a phantom disease.

My symptoms:

-very irritable bowels; diarrhea several times a week

-BMs are often loose / "mucus-like"

-BMs can take several trips to the bathroom

-urgent BMs that send me running (have had a couple "accidents")

-bloating: I get a little buddha belly that looks almost like a pregnancy!

-gas

-upset stomach after eating (it's hard to make a gluten connection because it pretty much in everything I eat)

- fatigue / need to nap in the afternoon*

*however had a normal iron count recently in a blood test.

- gallbladder disease (removed in 2001)

-Father passed away of a GI cancer

The last GI doctor I went to performed a negative endoscopy (NO celiac test), prescribed me prevacid and told me to stop drinking red wine with dinner. I'm a little frustrated and embarrassed and want to make sure it's worth it to be tested.

Thank you for the support, Kate

[amberlynn]

Well, I see it as you have 2 choices:

1. Demand a Celiac test. Hopefully it gives you the right answers.

2. Go gluten free and see if it helps.

I personally went with the latter. My doc basically refused to give me the test, and I know from being on a gluten free diet a few years ago that my symptoms all went away. I didn't even realize it at the time, but I do recall after going back on a regular diet thinking to myself that I didn't feel right. And I haven't felt right since, til I went back on the gluten-free diet...

My own symptoms were so random that I never put 2 and 2 together...

-bloating

-excessive gas

-allergy brain 'fog'

-migraines

-joint and muscle aches and pain

-intermittent diarrhea and constipation

-nausea

-persistent hunger

-trouble losing weight (gee, cause I was hungry ALL the time!)

-constant exhaustion (if I didn't have 2 kids and absolutely no chance to nap, I would've napped!!), but trouble sleeping (insomnia)

Now, most of my symptoms are gone. I have a degenerating disc in my lower back that has been debilitating for over a year. I was supposed to have surgery on it last summer, but the insurance company denied it. It was horrible, to the point where I couldn't walk somedays, let alone carry my 2 year old around. Now, it RARELY hurts. I carried my 26 lb son on a mile long walk. I used to cry nearly daily from the pain... Now I can wear heels again! I still get occassional migraines, but they are also triggered by chocolate/caffeine, so I have to watch that. I still have some constipation issues, but NO diarrhea issues. I am no longer hungry all the time either! And I no longer look pregnant, despite going to the gym 3-4 days a week .

If having a positive result is really important to you, then get the testing done now, before you go gluten-free. Once you go gluten-free, the testing is pretty inaccurate. I cannot put myself through the pain to go through the testing right now. I might decide to in a few years, to get a definite diagnosis (actually, I'm thinking I'm going to go the genectic test if I can save the money).

Good luck!