Very Very Confused!

[Raelynnsma]

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

[plantime]

Even if a biopsy is negative, you could still have celiac disease. Your bloodwork told your doctor that you have celiac disease. The gluten-free diet says you will get better if you avoid all gluten. CHEATING ON THIS DIET IS NOT ALLOWED, UNDER ANY CIRCUMSTANCES!!! After you have been gluten-free for a while, even a tiny amount will make you extremely ill! If you are gluten-free now, and have had the bloodwork done, then I think you should remain gluten-free. Your doctor said celiac disease. Accept it, change your diet to gluten-free, and begin enjoying life again! You have a precious little girl who needs her mommy whole and healthy!

[Susan123]

I think I would look for more answers personally instead of just accepting it Your symptoms sound extreme and to accept celiac disease without more assurance is crazy to me. It could be something else and you could be wasting time. According to top Celiac specialists in this country, bloodwork alone is not enough for a celiac disease diagnosis. It takes a combination of test results to make a diagnosis. My biopsy was normal too with elevated bloodwork for IgA. So I am in the same boat wondering if I have it or not? Try less invasive procedures like getting DNA Blood work done to check for genetic markers. It will not help in diagnosing celiac disease for sure but it can help rule it out. What about getting tested for food allergies? I went to an allergist who checked for over 50 different foods. Come to find out I have a strong wheat and corn allergy. Don't ever give up. Keep fighting until you get answers that satisfy you. Only you know how you feel and you need to fight to get better. Get online, do research, keep a food diary for a month, notice times symptoms occur with relation to eating. Also, keep a log of what your doctors are saying. I kept one for a year and it was very helpful when I met with a Celiac specialist. Also, my doctors were starting to put me on the same medication again that didn't work before so it helped to remember what worked what didn't etc. Good luck and I hope you feel better real soon.

[Guest jhmom]

Hi Laurie, welcome!

Your story sounds just like mine however I am not able to help you with the blood results (I am sure someone else will be along to answer that one) because I was dx through Enterolab. I too had all the test that you did and few extras, all of my blood-work was negative and test were negative too with the exception of the Endoscopy which showed patchy inflammation, but the doc did not think it was enough to make a dx of Celiac. One thing you must remember sometimes it takes time for a disease to show up in blood-work or in your intestines, etc...

I too left out of doctors office on the verge of tears wondering if anyone would find out what was wrong with me. I was at the point that if my doc did not find anything I was going to try the gluten-free diet for a couple of months to see if I improved, I was just sick of being in pain and could not take it anymore. I know there are people here that do not believe in that type of dx but I guess we all have a different level of pain and what we can handle, your symptoms sound extreme as mine did and maybe not all people go through what we have, I don't know maybe I am wrong. I understand the need for answers but at what point do you draw the line?

I agree with Plantime, if you have improved on a gluten-free diet on top of a positive blood-work I would remain on a gluten-free diet for life, why put yourself through more pain when you know what is wrong. Remember you cannot cheat on this diet, you are only damaging your body!

[lauradawn]

WOW! I am so sorry to hear that you have gone through so much.! Your symptoms are very extreme and I tend to agree with Susan. I have done much research on the blood work, and although not an expert with it.....your blood work does not SEEM to indicate celiac disease based on what has been explained to me. The TTG is extremely sensitive to Celiac, and your's was 2.... that is very normal. The other tests as well showed fairly normal. The one that is high, you did not name specifically so Im not sure which one it was, but my guess is, it is the IGA. That number can be high for other reasons. I would pursue this a little more. It is true that none of the tests are 100% accurate, so there is always room for mis dx, but it can give strong indications. If you are unable to find out anything else, you can do the gluten-free diet for sure. Espeicailly if it makes you feel better, but I would not give up on finding answers. You have too much at stake.

Please let us know what happens at the Dr's.

[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

[YankeeDB]

Laurie, I was so sad when I read about your difficulties!

You might consider getting tested by Enterolab which some think is a more sensitive and accurate test. www.enterolab.com

Also, labs DO make mistakes! And, if these were read to you over the phone, I'd want to see a prinout of the actual results from the lab.

Regarding endoscopies, sometimes they sample where the damage is not present.

If you feel better gluten-free, that is an indication in itself.

Just a few random thoughts--sorry so disjointed!

I really wish you rapid recovery and hope you'll post again to tell us how you are doing.