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Hi new and in desperate need for help

DgJ

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DgJ Newbie
DgJ
Posted

Hello

Im a 33 year old male and have always suffered with stomach issues, ranging from constipation to diarrhoea, gas and bloating. I've always just put it down to something I've eaten or just one of those things

 

6 weeks ago (after a very stressful 4-5 weeks) I started having severe diarrhoea and loose stools and awful pressure type pain in my lower stomach. At first I put it down to a sickness bug, but it didn't pass. So then thought maybe food poisoning, which the doctor said it did sound like and asked for a stool sample, which later came back negative. At this point no matter what I ate I had chronic diarrhoea and would go to the toilet 6+ times a day, most days into double figures

 

at the start of the 4th week I went back to the doctor who said they'd need to do a blood sample and explained one of them would be for celiac. I'd never heard of celiac and after doing some research into the symptoms I'd come to the conclusion that it has to be it and that many other symptoms I'd been suffering with for years (as well as the stomach problems there was joint pain, a rash that would appear now and again on both arms near the elbow, fatigue, depression and anxiety). I was sure that would be it and I could finally put the issue to bed and start to feel better....... the results came back normal! And the doctor said "it was a mystery".... she prescribed me coadine, which made me feel really ill the first night I took them with severe stomach cramps and gas

 

Ive since been privately to see a specialist who has taken more bloods and said it does sound like celiac, he's also booked me in for a colonoscopy next week. There is so much that leads me to think it could be celiac not only because of the severe symptoms of the last 6 weeks but also the symptoms I've had for as long as I can remember that I'm really hoping (in a weird way) that it is just so I can then do something about the symptoms I've had for such a long time? But am worried that they will again come back negative and I'll be none the wiser as to what is happening. It's really affected my life over the last 6 weeks and has made my anxiety and depression worse

 

My question is can you have underlying celiac but the symptoms be made 10x worse after a stressful period and does the symptoms I've been suffering with sound like celiac?

Thank you and sorry for such a long post.

 

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cyclinglady Grand Master
cyclinglady
Posted

Well, exactly what celiac blood tests were done as there are several (TTG, DGP, EMA)?  The TTG is the most commonly given test for celiac disease.  Unfortunately, it does not catch all celiacs (like me).  Then about 10% of celiacs are seronegative.  It is good that your doctor ordered a colonoscopy, but the small intestine can not always be accessed in this procedure.  An endoscopy is most used for celiac testing.  I imagine your GI is trying to rule out IBD.  

So, find out what celiac tests were taken and clarify the scope.  You can not go by symptoms because they can overlap with so many other illnesses.   I hope you feel better soon.  

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DgJ Newbie
DgJ
Posted
  • Author

Thank you for the quick reply

Im not sure what test was done as the doc said a celiac test and rang with the results a few days later. I will find out what ones were done

 

I am hoping that with the private doctor he'll use all the tests with the bloods?

cyclinglady Grand Master
cyclinglady
Posted

Not necessarily.  I am from the US and testing varies.  It can be driven by expense.  So, I would check.  

DgJ Newbie
DgJ
Posted
  • Author

It was the TTG test that was done at my local doctors 

cyclinglady Grand Master
cyclinglady
Posted

Some people, like me, never get a positive on the TTG (even on follow-up Testing) and I stated that some celiacs (10%) have negative tests results period.   Your doctor is doing the colonoscopy.  Ask him if he is going into the small intestine via that route.  

 

ssmith Rookie
ssmith
Posted

I am new to the site as well, I just wanted to relate to your experience. I too prayed that I had a diagnosis that would answer all my medical problems so I definitely related with your post (and I did end up cutting out gluten which solved pretty much all of my medical problems although I wish I had testing first). I would urge you to continue with the testing while you are eating gluten and if all of them still come back negative you could always try eliminating it from your diet to see if it helps? You may have a sensitivity and that wouldn't be picked up on the test. I am new so I would definitely ask your doctor or get advice from people on this site before taking my advice though!! I just wanted to say hang in there & good luck. 

 

In response to the stress- my husband has a different gastro auto immune disease that definitely flares up when he is stressed, I am not sure about the connection between Celiacs and stress but it would logically make sense to me if there was a connection - someone with more information would have to give input though. 

 

Best of luck to you!

 

Xo

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DgJ Newbie
DgJ
Posted
  • Author

Thank you

 

i have the colonoscopy on Tuesday and am dreading the prep more than anything lol. I think what ever the outcome I will try a gluten free diet to see if it helps with the symptoms. I've read so many stories of people going gluten free and symptoms such as depression, anxiety, joint pain, stomach issues being a thing of the past I'm really hopeful it could do the same for me

 

thanks again.

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