Maybe Celiac? Maybe not?: So a little... - Gluten Free Guerr...

Gluten Free Guerrillas
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Maybe Celiac? Maybe not?


So a little background info... hey everyone, I am 25 with 2 children. I have had digestive problems since the age of 16 after my 1st child was born from a C Section. I have suffered with stomach pains, constipation, diharea, leg pain, chest pain, back pains and uti's - but not so much recently. Anyways for years i was told i had IBS, all bloods i had tested came back fine, i wasn't sent to an ultrasound or anything.

My pain comes and goes. So sometimes i feel like nothing is wrong with me then all of a sudden i am in agony with back and abdomen pains. At one point i just thought it may be due to anxiety or depression. But the pain got so bad i couldn't move with my leg pain and had flu like symptoms and agonising back pains, so i was in bed everytime i wasn't working and took a lot of painkillers. So i took a trip to the dr. Explained what had been going on for years and how it was getting me really down and i couldn't cope with the pain anymore. I was so happy she wanted to test for celiac disease and send me for an ultrasound. As in the past i have asked but never got anywhere and wasn't taken seriously (at a different gp surgery) - in the past i was told everything was fine from tests and it was probably IBS but they wouldnt medicate?

Anyways after listening to all my symptoms this Dr said i know you have been tested for everything and last time the blood test came back fine but with really low iron counts and she said aneamic is one of the symptoms of celiac so she wanted to test me for it. So i had the blood test and i was sent for an ultrasound test.

So i was given a phone call from the dr with my blood results as i couldn't book an appointment and i was going on holiday. I have been told some parts have come back positive and some negative i can't remember exact numbers or details. But he said it is most likely to be negative anyways i think they want to send me for further testing like biopsies and camera's? I was just wondering what happens at these cams and biopsies and is it likely i have celiac disease if the blood test came back more likely negative than positive? I also had an ultrasound and found out i have a double kidney too, so maybe my pains might be from the double kidney and less likely to be celiac disease? Although my digestive system does seem like the likely cause as i have suffered with stomach and back pain for a long time now, diharea and constipation. In some ways i am glad i am getting further a long with this and not everything has came back fine like my usual results kind of thing. But in some ways i am worried about further testing. I will also be seeing a urologist too about my double kidney in case it is anything to do with that. So on Monday i will be booking a drs appointment to get some advice and probably be referred to specialists.

Thank you everyone for reading any advice would be helpful.

12 Replies

Hello, I am so sorry you are having all this trouble, but it looks like you are on the right track to get some help. I understand that blood tests for coeliac are often negative, but a biopsy is the definitive test because it will show if your villi are flattened and damaged, which is typical of coeliac disease. They will sedate you for the procedure an it doesn't take long normally.

Have you noticed if any particular foods give you a problem? if you can add it to your busy schedule with two little ones, it might be worth keeping a food diary for a few weeks. I do hope you get sorted.


Have a read of Coeliac UK website for information on testing.

Even if your biopsies come back as negative you can always try changing your diet to see if it helps you. IBS can be improved for some people by following a Low Fodmaps diet.

Good luck with the referrals.

Hi everyone thank you for the replies. Just to update i visited my dr and he seems to want to go ahead only with the urologist as he said he isn't convinced it's Celiac disease. He said something was raised in the blood test but it could be anything raising that part of my blood test. If the urologist comes back fine he will do further tests but he said he does think it's my duplex kidney.

So i have been in awful agony and pain waiting for my appointment for the urologist that is going to take a month :( i wish it could come sooner. Today i had pain all down both of my sides, chest and leg. Pain everytime i go to the toilet. It's been a bad day today but some days i can feel ok. I don't feel like working when i am in so much pain. But i have to get on with things.

I am just worried that finding my duplex kidney in Adulthood may have caused some damage.

I am changing my lifestyle and i have recently quit smoking and i am drinking more water. I am trying to eat more healthier. So hopefully i will help my body a bit more.

in reply to Kat182

If I was you I would ask the receptionist at the docs for a full print out of what you were tested for and the results. You are entitled to them, there may be a nominal charge for printing, but most of the time it is free.

in reply to Kat182

I have a double kidney. My problems are almost identical to yours but it is from a gluten intolerance. Stopping the gluten made me better almost immediately.

in reply to isellhomes

Hi i hope you are ok! i am glad someone has messaged who understands and has the double kidney as it is helpful. Well i have just been sent a letter by post cancelling my appointment in a month and bringing it forward to Tuesday which i am in a a bad position where one of my appointments needs changing. I had a smear test appointment too at the same time. I think i will just get the urologist over with as it's been worrying me but i have read they are just looking to see if i have emptied my bladder fully? I am a bit suprised as i thought they would concentrate on my kidney but i will just go with what they are doing.

I am just wondering have you been seen by a specialist and if so what did they do? Are you on medication for the pain? Thank you for your advice, I think i will stop the gluten then too as it does sound like it's not helping. I dont know whether to have all the tests before i stop gluten.

in reply to Kat182

I guess my wish came true lol 😂

in reply to Kat182

I go to an intregrative medical office. I have tons of blood work and found I was low in iron and vitamins and have a lot of inflammation. I did a stool test that found the gluten intolerance and other issues resulting from this. I think your doc thinking it’s your kidney is just a shot in the dark.

Hi, sounds like your having a rough time

I had bloating and pains for 10 years, diagnosed mild ibs. Got worse 2 years ago after my Dad died so put it down to stress. A new doc finally tested me for everything and came back coeliac.

I had camera to get a definitive diagnosis. Recently got worse so had camera in the rear and diagnosed with diverticulitis.

I have recently cut out caffeine, chocolate and cut down on alcohol and had no pains for 4 weeks which seems like a miracle to me. Hope this helps

Hi so i went to my urologist appointment and everything seems fine. I am just waiting on results for my urine test. But i have had the flu and i have cracked my back by coughing. So i am in a lot of pain with a sore back. Anyways i managed to get my coeliac blood results printed out and this was the results Immoglobin A was 4.9 the normal range was 0.80 -2.82 so i am guessing this is elevated and

My Ttg was a 1 when normal is 0-6 so this was normal range. I think i will be going back to the dr to see what the next steps are. It definitely wasn't my double kidney causing the issues anyways.

I think immoglobin A means your coeliac ttg test might be showing a false negative, so the next steps would probably be a colonoscopy. I'm not 100% oon this, but it might help to read into it before your appointment, so your doctor doesn't inadvertantly dismiss you.

The dr said my coeliac disease was negative so he said there are other reasons why the immonuglobin A can be high so i have an appointment for another blood test? The urologist has booked an appointment for cystoscopy tomorrow... which i really do not want to go too! I am waiting for my smear test results and then the dr urgently referred me for a colonoscopy as i have been bleeding a lot at the beginning of the year and another month. But nothing recently. The urologist wrote a report saying i came in really ill and need further tests... I am always at the drs lol i have flu like symptoms one week every month. I have sore legs still and stomach and back cramps come and go. I am tired but i am taking iron tablets. So idk.

It is taking a long time and lots of tests to be diagnosed.

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