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Blood Test Results


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#1 HarlequinMaze

 
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Posted 11 March 2013 - 07:38 AM

Hi,

 

Im new to this and ive been tested for coeliacs disease and other things. I got my results back today and was told i had to make a non-urgent appointment. Is that normal for doctors if you have coeliacs or could it be something else?

 

Im been worrying about it all week, not knowing why i feel like cramp most of the time. I am worried that if they are negative what could be causing my symptoms.


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#2 KristinIrwin

 
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Posted 11 March 2013 - 12:24 PM

My doctor did something similar! They did blood work and the nurse called me and said that my test showed a possibilty of celiac and to "maybe go on a gluten free diet, if I want to, and see if I feel better". Which doesn't even really make sense.. because she never even mentioned an endoscopy and biopsy at all. She didn't seem concerned, which was really frustrating! So, even though it shouldn't be.. it is possible that there was something in your blood work that suggested celiac and that the doctor isn't acting as if it is very urgent- that is kind of what happened to me! I would hope that if they were concerned about celiac with you that they would have at least told you that.. but I also have experienced disconnect like that with other doctors. I called and left a message saying I was confused, and they did call me again and said I needed to get a biopsy done. So I think you should definitely call them and demand that someone contact you and give you more detail about your results. Because whether it is celiac or not, it's your health and you shouldn't have to wonder!

 

Hope you get to feeling better!


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#3 tiredoffeelingblah

 
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Posted 11 March 2013 - 01:42 PM

I have been having symptoms that are associated with numerous conditions for around five years now; however, I have yet to truly be diagnosed with anything. I keep getting little explanations here and there and I am starting to believe that my doctors' recommendation to see a psychologist is right and that maybe it's psychosomatic. I am a 28 year old, white female. I never experienced any health problems prior to adulthood and successfully carried my daughter to term and had a healthy pregnancy seven years ago. Three years ago I experienced a 3-4 month period of diarrhea, in which I lost a significant amount of weight, and my BMI dipped below 18. I was diagnosed with adult ADHD and a mood disorder during this time. After a few months of this I started having flu like symptoms with chills and lethargy, followed by shortness of breath, muscle cramps and spasms, digestive problems, and weight gain. Over the next six months everything continued to get worse and my doctor at the time tested me for e pylori and also had an ultrasound done to check my gallbladder. Nothing showed up. The doctor said that maybe I was depressed and he put me on Zoloft. He started me at 20 or 25 mg? and it didn't seem to do anything for me so he upped the dose to 50 and still nothing so he upped it to 100. Even though it didn't work, getting off of the Zoloft at that point was painful so I prolonged stopping it for a few months. That summer my family and I moved to Italy and I started seeing a military doctor (well over the past year there have been at least 5 or 6 different doctors).  I had blood work done that August because I had developed a blister like rash on my body (particularly my lower legs) that was so bad and painful that it made shaving nearly impossible. The ulcers also appeared on my face, back and buttocks, scalp, inside ear canal, and sometimes on my thighs. The doctor was not able to get a sample because the two times I saw him the blisters had broken and dried. He prescribed me a steroid which worked semi-okay in clearing them up. Over the past year I have had them come back at least eight times. My TSH was high and I was diagnosed with subclinical hypothyroidism and put on 25mg of synthroid last June. My TSH has lowered to around 1.8 but I still don't fell well most of the time. I have also had two ultrasounds of my neck this past year to check two swollen lymph nodes that I have. I saw an Italian endo last June and he said the we should watch them and if they increase in size then he will do a fine needle aspiration. One of them showed that it was not cancerous but it larger than 3cm.  Over the past four years I have also had five of my molars break despite brushing my teeth at least three times a day and proper dental care throughout my life. My allergies have gotten super bad over the last few years and I take Zyrtex daily for that. I have unexplained fertility, my husband and I have tried to conceive for over three years with no success despite my being pregnant twice before. My body aches and my back, neck, and shoulder are always in pain. Sometimes a joint in my thumb or big toe will swell and start to itch. Sometimes I will get a really bad itch all over by body without a rash that lasts for several days. I believe that is all....My grandmother had a thyroidectomy when she was 41 and then breast cancer a few years later. She has also been diagnosed with fibromyalgia, restless leg syndrome, and rheumatoid arthritis. My younger brother was diagnosed with cancer when he was six (round cell sarcoma). I have had almost every antibody test run and nothing had turned out positive. The only thing that has been high is my bilirubin which has been >1 for over three years, with normal liver tests and recently my LDL was high and that's never been the case before. I had the doctor test me for Celiac since my uncle was diagnosed with the gene and the disease after over ten years of misdiagnosis. Most of his symptoms are similar to mine so I figured what the hell. I got my results today but have not seen the doc yet and so far from what I have read online, my results indicate once again that I am negative. TTG IGA - 1.0, TTG IGG - 0.4 and IGA was 293?? I'm so tired of being told that I'm "fine." I have been a super active person my entire life and all of these symptoms have mad me feel as though I have aged over ten years in the past two years.  Any thoughts would be appreciated!


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#4 HarlequinMaze

 
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Posted 11 March 2013 - 11:26 PM

My doctor did something similar! They did blood work and the nurse called me and said that my test showed a possibilty of celiac and to "maybe go on a gluten free diet, if I want to, and see if I feel better". Which doesn't even really make sense.. because she never even mentioned an endoscopy and biopsy at all. She didn't seem concerned, which was really frustrating! So, even though it shouldn't be.. it is possible that there was something in your blood work that suggested celiac and that the doctor isn't acting as if it is very urgent- that is kind of what happened to me! I would hope that if they were concerned about celiac with you that they would have at least told you that.. but I also have experienced disconnect like that with other doctors. I called and left a message saying I was confused, and they did call me again and said I needed to get a biopsy done. So I think you should definitely call them and demand that someone contact you and give you more detail about your results. Because whether it is celiac or not, it's your health and you shouldn't have to wonder!

 

Hope you get to feeling better!

Thank you. I have a appointment tomorrow morning but it is annoying that nothing was written on my notes when i asked the receptionist what blood test was it concerning.

 

Well i will find out tomorrow and im convincing myself its properbly got something to do with my underactive thryriod. Though i did read that the blood tests for ceoliacs can come back negative. Hopefully my doctor will know that and not fob me off like previous doctors.

 

Ive had stomach cramps and bouts of diarherra, contipation, etc since i can remember! There was one time a few years ago i thought i could have appendictis as i had really bad stomach pain so much that i was sick and couldnt get comfortable. The doctor just said i was fine and it was nothing! How can that be nothing!

 

My auntie has a gulten intorlance and i my cousin has coeilacs so if its in the family, would there be a chance i could have it. It is frustrating


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#5 1desperateladysaved

 
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Posted 12 March 2013 - 06:27 AM

I hope you will get some definative answers soon. 

Diana


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#6 GottaSki

 
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Posted 12 March 2013 - 07:52 AM

Thank you. I have a appointment tomorrow morning but it is annoying that nothing was written on my notes when i asked the receptionist what blood test was it concerning.

 

Well i will find out tomorrow and im convincing myself its properbly got something to do with my underactive thryriod. Though i did read that the blood tests for ceoliacs can come back negative. Hopefully my doctor will know that and not fob me off like previous doctors.

 

Ive had stomach cramps and bouts of diarherra, contipation, etc since i can remember! There was one time a few years ago i thought i could have appendictis as i had really bad stomach pain so much that i was sick and couldnt get comfortable. The doctor just said i was fine and it was nothing! How can that be nothing!

 

My auntie has a gulten intorlance and i my cousin has coeilacs so if its in the family, would there be a chance i could have it. It is frustrating

 

Yes, there is a genetic link in Celiac Disease.  If your aunt and cousin have it -- your chances of having it are increased over general population.

 

You need to ask your doctor's office for written copies (or electronic) of ALL test results.  It is the only way to look back to compare previous results and to find out if you had ALL the necessary tests for Celiac Disease.  Sadly, doctors don't often run all the necessary tests.

 

Come back and post your results -- we can help -- not only with Celiac Disease - many of us have other AIs and Thyroid issues.

 

Hang in there and NEVER accept a doctor telling you your symptoms are just a little this or nothing at all....I did that for far too long!!!


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 ruthie_ray

 
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Posted 12 March 2013 - 09:22 AM

It may not be extremely serious, and since they said non-urgent, it's likely not life-threatening.  I've had to make some non-urgent appointments to be told, I was hypoglycemic, had a bad pap smear that required follow up, had eleveated, ANA's, all required a non-urgent appoint to give me the results.  Don't sweat it until you know what it is.  Good luck.

Hi,

 

Im new to this and ive been tested for coeliacs disease and other things. I got my results back today and was told i had to make a non-urgent appointment. Is that normal for doctors if you have coeliacs or could it be something else?

 

Im been worrying about it all week, not knowing why i feel like cramp most of the time. I am worried that if they are negative what could be causing my symptoms.


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#8 HarlequinMaze

 
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Posted 12 March 2013 - 09:47 AM

Thanks well ive got a appointment in the morning so i will find out then.

I

know the doctor tested me for and checking my full blood count, Imflammatory diseases, iron levels, b12 levels, sodium and potassium levels, kideny and liver function, thyroid and of course a ceoliac screen. Though im assuming that covers everything?

 

Having read about it online, i know people can get negative blood test yet still have the disease or a non ceoliac gluten intorlance. If they come back negative. Ive considered doing a gluten free diet just to see if the pains stop and i feel better.

 

I will try and get my results printed out. :) And let you know


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#9 HarlequinMaze

 
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Posted 13 March 2013 - 02:13 AM

Well the doctor said my blood test results came back normal apart from having low foic acid levels. And that i probably have IBS and put me on mebeverine to help with the stomach cramps and bloating.

 

He did suggest a elimation diet to see if there is anything in my diet thats affecting me. So i might do that and see what happens. :)


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#10 GottaSki

 
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Posted 13 March 2013 - 07:58 AM

IMHO...

 

IBS = I Be Stumped.

 

And a doctor saying all tests are normal is not acceptable....call or email his office for written or electronic copies of all blood/other tests that have been run.

 

Often docs have not run a complete celiac antibody panel, nor enough nutrients.  Even if they have run all the proper tests -- borderline lows in nutrients do not ring any bells with them, but if you have many borderline lows that is another indication you are not absorbing properly.

 

You can indeed remove ALL sources of gluten for a period of 3-6 months to monitor symptoms.  This is your best option if you can't get a diagnosis or you are Non-Celiac Gluten Intolerant -- NCGI presents with many of the same symptoms as celiac disease -- these folks are sero-negative on all antibody tests - yet their health is often dramatically improved with the complete removal of gluten.

 

Good Luck to you :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 HarlequinMaze

 
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Posted 13 March 2013 - 08:28 AM

lol, I know! Its so easy to say its IBS. Thank you :) . I am going to do a gluten free diet and hopefully i feel better.


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#12 GottaSki

 
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Posted 13 March 2013 - 08:39 AM

Great...let us know how we can help...and make sure you read the "Newbie 101" thread -- it will get you off on the right start :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#13 HarlequinMaze

 
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Posted 13 March 2013 - 09:30 AM

Thanks, I will. Its going to be tough. Im glad that i found this forum :)


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