Raelynnsma

Thanks for posting back to me.

Well, I messed up my doc appt is tomorrow at 4. Woudn't it figure I would get my 10 month old all ready and pack the diaper bag...then all of a sudden I thought...darn today is Wednesday..my doc appt is Thursday!! GRR!! lol

In the mean time my doc called from Boston. I told him about the blood work results and he scheduled me for Friday at 1 for another scope down my throat. I really hate to have this done AGAIN.

I am waiting to hear from my primary doc..I see him tomorrow but I am desperate to talk to him to find out if he thinks I should have this test done for the THIRD time. Also, I put in another call to my GI specialist here on the cape for his opinion as well.

I am scheduled for a series of allergy tests in a few weeks. I am hoping to get to the bottom of this. It feels like once I have an answer...I really don't. I'm lost.'

Thanks for listening....

Laurie

My story is so long..I'm not sure where to begin?

While I was pregnant I spent the last 6 weeks of my pregnancy going back and forth to the hospital for fluids. I was always dehyrated as I was having so many BM a day. My OB assured me this was NOTHING to do with my pregnancy. AFter giving birth in May I never felt any better. In fact I got worse. I was ALWAYS having tons of diarhea and so much abdominal pain. My life totally changed I was always sick. I was in soo much pain I would fall off the toilet and make a mess everywhere. My husband and I would be driving somewhere in the car and we wold have to pull over as I couldn't hold myself. I was soo humiliated soo many times.

I had my first colonoscopy and scope down my throat July 22nd. Those tests just showed some signs of being "raw" {that was the word he chose to explain this to me} He said I have a case of IBS and sent me on my way.

I couldn't believe it for one second this was IBS. I honestly at 26 years old thought I was dying. I remember telling my husband one night in between an attack of terrible pain and diarhea....that I am dying and to please take care of our little baby. I told my husband everything that I would want to have that is mine and just really started to prepare myself that the docs weren't going to find anything and I was slowly dying.

After those first tests I went in to see my primary doc. He put me on some med {I foget the name of it} and it did NOT help me at all! I went back to him and he put me on Belladonna. At this time he scheduled me an appt to go into Boston to meet with those docs.

I met with the GI team down there. What a mistake that was!! They scheduled me for a colonoscopy and again they said IBS. He scheduled me for an upper GI and an ultra sound of my gall bladder and my liver. Those tests must of been fine as I never heard back from him. He was really rude and I left crying. Didn't want me on the Belladonna and basically wanted me to deal with this.

After realizing now that NO ONE is going to help me...I gave up trying to be better. I guess you could say I really was getting depressed. I stopped going out in fear that I would have to humilate myself in front of my husband and daughter and relieve myself in a bucket or whatever just happened to be in the car. My stomach was always in soooo much pain. I couldn't even wear jeans cause any pressure touching my stomach was so uncomfortable.

Being so desperate for help I went back to my primary doc. He scheduled me for more bloodwork and a cat skan. I cancelled the cat skan and gave up totally. Once I saw that I had to drink more of that gross drink...I didn't even force myself. I almost accepted the IBS. I just thought the bloodwork was to check my thyroid and just routine again. I never expected to hear back. The next night at SEVEN PM my doc called and said he found it. He said my bloodwork showed antibodies and to eliminate wheat and gluten from my diet. Honestly I was sooo excited to have an answer. Although I had no idea it was celiac disease. He schedluled me to meet with a nutrionist and when she called to set up the appt. She had said that I was going in for celiac disease...I was like what the heck is that?? My doc had never metnioned celiac disease to me and I had never heard of it.

Since then I have cut my enemy out of my diet {although I did cheat over Easter but I am going back to being gluten-free again.} All of this is very new to me. My blood work was done in Feb.

My test results say the following ...

Celiac Panel

Test name {antigliadin } Result {72 H}

Test name {antigliadin} Result {3}

Test name {Tissue Trans} Result {2}

Only one seems high?? could I still have celiac disease?

Yesterday I called both docs that performed the tests on me. Only 1 doc called back and said he did a biopsy in July and it did not show celiac disease. He said for me to keep in mind that "at that time celiac disease didn't show"....

Does this mean I have to go in for another scope down my throat? Is the bloodwork enough? I feel so much better when I don't eat wheat or gluten..but to be honest I really would like to know if I have celiac disease or not? Does anyone know how to read the blood work details for me?

I have a follow up appt today with my primary doc at 4 so I'll be interested in what he has to say. I'm so very confused.

Thanks for listening..looking forward to hearing your thoughts. Thanks

Laurie