Gut issues for over a year - TMI

[Jayjayjayjay]

Hi all,
Ill try and keep this short, I wanted to post on here over the course of the year as I am sure my friends and family are sick to death of me talking about it. And I just need some handhold/advice through this process.

I started getting gut problems a year ago, also had in the past but on and off. This year it has slowing got worse and worse and worse. Diarrhea alternating to constipation. Pain in my left upper abdominal area.

Drs didnt really take anything i said seriously till i started having heart palpitations and dizzy spells 4 months ago, I had an ecg and bloods. Came back super low iron and folate so have been on iron tablets for 3 months, told to eat loads of gluten, for a redo of the blood tests tuesday, including a celiac test.

Slowly over the 3 months its got worse and worse to the point where (i apologise for the visual) i poop bright yellow, super urgent in the morning, undigested food, constant Diarrhea, bloating, gas and pain all over abdominal area, it hurts to breath in. Had some weird maybe related symptoms too, like joint pain in my hips and hands. All the symptoms are also worse around my period especially the upper left rib pain.

I have 2 more days of gluten, ive already decided to give it up as soon as the bloods are done. But worried about if the ceoliac test is negative - then what? Ive put it to the back of my mind but I lost a friend to pancreatic cancer in 2019 (he was 30) and a colleague at work who I was on this celiac journey with, has just been diagnosed with stonach cancer, so its throwing up some health anxiety for me. And I feel inconsiderate to even compare situations.

I did a home ceoliac test 8 months ago and it was negative. But i dont know how reliable they are? Nor was i eating as much gluten as i am now?

I just want a positive result, so i know what to do to feel better. Im not great with doctors and scared to push for further tests, i dont really want a endoscopy either. I just want to know is gluten the reason i feel like this?
I guess im looking for similar experiences And some wise words.

Thank you! Sorry i didnt keep it short..

Bumping for you.

I have similar symptoms without the bowel movement issues and with indigestion instead. Mines started in pregnancy so assumed hormonal - I'm 6m PP now and, don't want to jinx it, it's getting better with flare ups at my ovulation and period times.

I do suspect it's a intolerance that is made worse with hormones but as it's "getting better" it's a case of wait and see.

Also have low iron and folate so that's interesting - tested as my PP hairloss was way overboard.

Thank you, yea it's definitely linked in with hormones somehow. Stress also, I can't tell how much is that and how much is an underlying cause/intolerance.

I had my follow up blood tests/celiac tests yesterday so hopefully will get some answers soon. I think i just feel fed up with it all and needed to rant somewhere about it and feel less alone. I feel im being petty sometimes when other people have bigger problems, so thanks for even just reading! 😊

Not at all petty, these things weigh on you and wear you down. I remember being in tears about it and my anxiety being through the roof as it persisted.

Even if the coeliac test comes back negative, you might have an intolerance to wheat/gluten. You have said you’ll stop eating it after the test anyway & that sounds like a good idea. I am in a similar position, but my symptoms started in 2001. Hence I’ve had a long time to work out what works for me. Stress plays a large part in many people’s digestive systems. Since “be less stressed” isn’t great advice (I had 4 DSs aged between 9 & 3 in 2001 & one had severe ASD, plus I was working part time) try to find ways you can de-stress. Recently I have found that probiotics really help. I drink about 65mls kefir every day and that has really helped my gut. Other symptoms I get after eating wheat: like you - joint pains. A tickly cough. Bumpy, itchy skin on my arms. Low mood. I very rarely eat wheat, but when I do I find taking an “Eat Enjoy” capsule helps (I get them from Amazon). I can eat small amounts of other grains that contain gluten, eg rye & barley. Hope this helps.

Thank you, that's all really helpful!

I had my blood tests a few days ago, all came back apart from the ceoliac one, apparently that can take abit longer. Iron levels have improved which is good. Ive cut out gluten for the last few days and already see some mild improvements (thought hard to tell because Im also on my period! So still having bloating etc)
Weirdly I also have joint pain and bump itchy arms! So Im hoping this will be start of things looking up! I will definitely look into the "eat enjoy" capsules and some natural probiotics. Till my results come back, im trying not to mess with anything other then removing gluten, so i can see what effect its having, but im hopeful! :)

Thank you for the advice!

Th yellow stool sounds like bile acid diarrhea, did the doctor mention this? I would ask for a referral to as gastroenterologist , if you can go private it will be faster. It can be treated with meds if that it what it is, it the colour and the urgency that’s making me think that. Have they run a stool test to check for infection or anything?