Do I Really Have It?

[KLTerry]

I'm trying to find my way out of this tunnel of denial still. Here's my story: I was having pain in my abdomen (cramping) it seemed every time I ate or if I didn't eat for a long period of time and I had been painfully constipated for two years since the birth of my first child (despite trying several medications). I went to my family doctor and asked to see a GI. At the GI, I had blood tests (two which came back as negative, but one was slightly elevated). Then, I had a biopsy, which also came back negative. I was told by the GI that I did not have Celiac. A few months went by, and I continued to have cramping, so I went back to the GI. He then sent me in for another blood test to check to see if I was genetically prone to celiac disease. This test came back "in between," so he sent all of my records to a specialist in New York who then determined with everything put together, I "probably" had celiac disease. I just don't like the "probably" thing. Should I get a second opinion? And, if so, will my insurance cover it?

I've recently had a negative PAP, so it couldn't be anything gynacological.

I thought that celiac disease gave you diarreah? I only have that on occasion when I eat something.

Any thoughts on this would be deeply appreciated. Thank you.

[Guest Leidenschaft]

I have been gluten-free for just one year now, I spent the previous 15 years in denial.... that's how long my mother was living gluten-free. Now when I get "glutinated" I do get diarhea, however initially that was never part of my symptoms. My biggest complaints before diagnosis was irregularity, constipation, bloat, heartburn, and what finally drove me to get diagnosed was the crippling pain in my hands!

A caution to you, is not to assume that your problems could not be gynecological based on ONE pap test! Does anyone know the stats on FALSE pap results?? I know many news shows have done stories on how women have died of this cancer or that because their pap test was wrong! I'm not saying run out and have two or three more, just don't rule that avenue out completely...

I remember when my biopsy results came back, the secretary at the doctor's office read to me over the phone, and I don't remember the exact words, my small intestine showed signs of damage, however the result did not mention Celiac's at all! I phoned the office of the GI who did my biopsy, and on Christmas eve 2003 I received the words from his mouth that I was in his opinion Celiac and should immediately begin a lifelong gluten-free diet.

It took me one year of doctors and tests to get that diagnosis, however in my heart I had already begun the grieving process. I decided to allow myself the holidays non-gluten-free and paid for it. However, it did cement in my mind the need for a new diet. I have noticed some positive changes over the past year, however sometimes I feel like I'm as weak as ever! I get "glutinated" occasionally, usually contamination, but it would seem from reading through this forum that I am one of the lucky ones since my reactions seem very mild compared to many! I go for bloodwork next month to see if my body is absorbing more nutrition through my healing intestine. I hope to see some really positive changes! My doctor was quite supportive about having some starting values in place to work with, including a bone density scan, x-rays of my hands, etc.

It seems that some people on the board never did get conclusive diagnosis of Celiacs but have chosen to live gluten-free anyway. If a second opinion is inconclusive, you may want to just try a gluten-free diet for a few months to see if your symptoms are relieved.

As with any illness, mental and emotional coping has it's highs and lows. Some days I feel like this diet is pretty easy (never been a bread, cereal, pasta eater!) and other days I'd kill for a Big Mac! At Christmas time I was so depressed I almost did eat some cookies I bought for my hubby, instead I went online and found an easy Shortbread recipe. I went home and baked 3 dozen AWESOME cookies! I brought them into my dog training club the next morning and nobody could tell the difference! Somedays it really sucks, and somedays it's really okay!

The main thing is to find out what it is and start healing your body! I'm ashamed at myself and the damage I've caused my body when I knew for a long time I was at risk.

Oh well, there's no milk in my glass to cry over anyway, only Calcium enriched orange juice!

Good luck!

[tarnalberry]

The only thing to do with inconsistent lab tests is to try the one test that matters the most - the gluten-free diet. Try the diet - following it STRICTLY for a few weeks (at least four, preferably longer) - and see if it helps your symptoms.

[mda10]

First, even a negative on the biopsy test could still mean you have the disease. The GI has to take a sample from the duodenum in the right place, which may nt be affected though other parts of the small intestine may be.

Second, constipation is a symptom in many celiacs. I had gas and bloating. No diarrhea, no constipation, no weight loss. But lots of mouth sores and fatigue. So everyone's different.

Third, you can see if you have the gene for celiac, at least, by taking a simple swab test:

Open Original Shared Link

Gluten Sensitivity Gene Test

HLA-DQB1 gene test from a swab of your mouth, testing for the propensity of developing gluten sensitivity, celiac disease, microscopic colitis, and other autoimmune disorders. $149.00

Good luck!