lookingforanswers17

Just got my blood work back. the doctor only tested c-reactive protein, sed rate and endomysial ab. All came back negative. Should I just start the diet and see if my symptoms get better? I don't know what to do?

Word of warning.... this is a long post but I just needed to vent and hopefully get some advice. Thanks in advance for you're help. Still waiting on my celiacs bloodwork but I feel like I'm finally making progress on getting a diagnois. I have a question though about bladder pain. When all my GI symptoms began I also got bladder pain. My bladder often hurts especially after gluten containing foods, alcohol, or consuming artificial sweetners. I've seen several urologists but they just dismis my symptoms. My family doctor suggested I may have Interstitial cystis but the urologist never tested for it. I'm a 22 year old male so he thought it would be highly unlikely I had it. All the symptoms started with the other celiacs symptoms I have. Not only will my bladder hurt but my whole pelvis will hurt and it is really annoying. Anyone else had these symptoms with celiacs? Could I have celiacs and cystis or could celiacs alone cause the problems. I just ordered the product prelief? Anyone taken it? I've hurt it really helps with IC so I figure I have nothing to lose. I'm not giving up until I feel normal again. Even if I have to see a million doctors. I just believe all my symptoms to be related somehow because they all started at the same time. Back pain in the SI joint which won't heal even after months of PT and chiropractic visits/ Abdominal pain/ibs symptoms which I refuse to believe is simply IBS and all the urologial symptoms along with anxiety and depression that started at the same time. Sorry this is such a long post. I'm just frustrated and looking for answers. I have trouble getting the docs to take me serious because I don't look sick but I truly feel terrible everyday and I know its not all in my head. Something is wrong and I want/need to know what it is. Hopefully celiacs will be my answer. I don't wish to have anything but I want a name for what I am going through so that I can begin to heal. I'm so tired of being sick with know reason why.

I have been anxiously waiting the results of my bloodwork for celiacs that was done over a week ago. The doctor said they have gotten partial results back but are still waiting on the rest of the results before they tell me what the bloodwork says? Is it normal for the bloodwork to take this long? Usually I get bloodwork back in a day or two but its been almost 2 weeks. The bloodwork was done at Qwest.

is it possible to still have celiacs with a normal sed rate and c-reactive protein?

I just went to the doctor today and he suspected celiacs. He ordered bloodwork but the test are somewhat different than what I've seen on here? Will these test show celiacs?

Sed rate (this one is always normal for me so I don't know why he is testing it again)

also,

C-Reactive Protein

and

Endomysial Ab? Is this one for celiacs? Should he have ordered other bloodwork or will this show it? I want to make sure I am getting tested for the right things?

I am going to the doctor this week to request testing for celiac disease. Hopefully this will the beginning of my road to recovery and feeling better. I'm excited about the testing but scared in a way that it will come back negative and I'll be left with no answers again as to why I am so sick. It's been over a year since all my symptoms started. Hopefully they can figure this out. Thank to everyone for the advice. I will keep you posted as to what the doctor says and does.

No....it does not show up in routine bloodwork. There are specific antibody tests for Celiac.....so yes...if you would like to be tested you would need to request the panel.

These are the tests....make sure you get all of them. They need to test the Total Serum IgA in order to make certain the tests arent false negative due to IgA deficiency.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

My own personal opinion is that its important to have the tests done prior to starting the diet. The reason for this is because many people do not have Celiac Disease.....but are gluten intolerant as a result of other underlying health conditions.

If you forgo all testing and still suffer from unexplained food reactions or symptoms down the road...you will not know if you're dealing with Celiac, some other condition, or both. Alot of people end up in this situation when they choose to initiate the diet without doing any testing.

Are stool tests reliable. I did not specifically get tested for celiacs but they did test for many things with a stool test. the only thing that came back abnormal was a reaction with gliadin. I believe the scale was from 0-20 with 20 being high. I scored a 41. The test was done through metametrix. just wondering if this is in anyway an indicator of celiacs. They said it was a marker for celiacs but not a definite that I had it. No further testing was done though.

It may be time to just give the diet a try. Some of us are very difficult to diagnose, in part because up to 30% of us will show negative on blood work and often once they see a negative blood test the subject is closed in the doctors mind. Your doctor should have no problem ordering the celiac panel, in fact you shouldn't even need an appointment he can call in the lab order or you could pick up the slip. After they have drawn the blood, IF you don't think you are going to want a biopsy you can then go gluten-free. The true test of whether the diet is needed is your response to the diet. Being on the diet will not mask other disorders and will not effect test results for any tests other than the ones for celiac. You don't need a doctors permission to be gluten free.

I'm new to all this and had a question. I just had routine bloodwork done which all came back normal. Would celiacs show up in routine bloodwork or do I have to specifically request blood work for it?

I have suffered from what i believe to be symptoms of celiacs for over a year. back pain, abdominal pain, bladder pain and a host of other symptoms. the doctors have basically given up and just blown me off. They said I have ibs and now they have me on anxiety medicine which hasn't helped. I am anxious but only because all of the other health issues i have experienced. so far nobody has tested for celiacs other than a stool test that showed an off the charts reaction to gliadin. How can I get help? I'm so tired of being so sick and in pain and getting nowhere with the doctors. I'm so desperate to feel better. I'm not looking for a miracle... just to feel normal again... if thats possible. I refuse to give up until I get answers. I'm just so tired of fighting to get them.

i am a 24 year old male. has anyone experienced pain other that abdominal with celiacs. I have had bladder pain and back pain which the doctors have not found the cause of? at first they thought the bladder pain may be related to prostatis but a uroligist ruled that out and could find no cause. all my other symptoms point to celiacs? anyone else experienced similar symptoms or no if these could be caused by celiacs?

For over a year i have had horrible symptoms with abdominal pain and other symptoms diagnosed as ibs. i also have terrible bladder pain and times and sciatic like pain. i have had numerous testing including a colonoscopy when this first began and the doctors ruled it ibs. i have tried everything for the ibs but nothing has worked. I had a stool test done that showed an off the charts reaction to gliadin but no further testing was done. My symptoms are always there but get much worse after ingesting anything heavy with wheat. My stomach becomes bloated and aches with cramping and burning sensations. All my regular bloodwork has come back normal. the nutritionist thought it could be celiacs. funny thing tho is i haven't lost weight. i have steadily been gaining for no reason since these symptoms began and am unable to lose the weight. i am desperate for answers. the pain is excrutiating at times and i don't know where to turn. does anything sound like celiacs? should i get tested. i had thought the colonoscopy would have showed celiacs but now i am learning that it would not have? what should i do?