New here help needed

[nanny marley]

Hi I've joined here today hoping someone can help me I've had long running bowel issues upper pain bloating gas changing stools sickness extreme bowel pain after food was told it was ibs but had I've got older I've learned a little more I've recently cut gluten and lactose out for 6 months and I've been loads better only odd flare up but it's been something I've obviously eaten I shouldnt of I've had to cut graveys sauces and salads out too some fruits and veg sets me off also so I've had a strict diet so I decided to go the docters again and ask to be tested for coeliac she's sent me for a blood test for CPR and a fecal test for cal protein but I was wondering would this not show anything now I have cut those foods out for so long I know there's definitely something because if I deviate off the foods I'm terrible with pain gas and diarrhea and feeling nausea and very tired I just don't want to go for  these if it should be done different and have false results I've been struggling for over 30 years I've had cancer tests all fine but just lately it got the point  were I couldn't go out because I was embarrassed because I had gas all the time and if I got a flare up I needed up be near a toilet had it was very urgent that's why I did the gluten lactose elimination diet and it seems to help 90% but she said it's fine don't stop doing that any replies would be greatly appreciated thankyou 

[trents]

Welcome to the forum, @nanny marley!

Unfortunately, after bein on a gluten free diet or even a reduced gluten diet for weeks or months, you can expect test results to be negative.

[nanny marley]

Thankyou for your reply really appreciate it I thought has much so it's just a waste of my time really isn't it because it's on Tuesday and I've been cutting it out over 6 months now 

[nanny marley]

Love your profile pic by the way 

[trents]

Thanks for noticing my avatar, or "profile pic" as you call it. It trust the ichthus symbol is meaningful to you as well. 

It's certainly nice to have an official diagnosis of celiac disease if that is the problem but I think you have discovered by experience in changing your eating habits that you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity). With either condition, the antidote is the same, total abstinence from gluten for a life. In some countries, like the UK, there are government subsidies for offsetting the cost of gluten free food and some additional follow-up support if you have an official diagnosis. Many people find themselves in the same boat as you by experimenting with the gluten-free diet before getting tested and unable to endure the "gluten challenge" in order to get testing done for an official diagnosis.

It is very common for people with celiac disease to develop other food intolerances/sensitivities. 

Edited December 15, 2024 by trents

[nanny marley]

Can I also pick anyone brains of the symptoms I have fatigue body hair loss had low vitamin d for like forever jumpy legs Renaud's contact dermatitis rhinitis body aches tmj heart palpitations I have regular hair loss sleep issues sickness dizziness also with my bowel issues are these any signs of this too because all I've ever been told by my doctors is that I have severe IBS  and health aniexty I've had inflammation flagged up before in blood tests but I have 3 herniated discs and a trapped sciatic nerve so they have put it down to that every time but I've been struggling with my bowels for years and it's got worse had Ive got older and Wen I cut the gluten out it was like omg what a difference then I did the lactose and it was  even better but I still have a few issues going on too so I'm thinking on the lines I could have this any help be appreciated because my docters are terrible 🙏

[nanny marley]

Yes I have the fish symbol on my car and my ring 🙏 and yes I've been going for years to the docters but I got that feed up ov having to avoid eating out or even visiting people threw aniexty of needing the toilet or of gas or sickness I did some research of my own and I did the elimination diet and what a difference I've had my family think I'm nuts at times saying it's in my head it won't help until they now are doing it too because my daughter's are facing the same issues it's made me feel so ill at times it's so crazy how food can do this to you one night I was up 6 times to the point I had nothing left in my body I didn't go to the toilet for days after and I felt sick has a dog I'm so glad I found this forum I feel a little more human already 😄

[nanny marley]

I call it the fish because I can't spell the other word at times 🤣 don't want to make myself look silly but yes I have this symbol on many items so nice to see it today wen I'm needing help  gives me faith I'm on the right track 

[trents]

Ichthus is the Greek word (using English letters) for fish. The letters in the actual Greek word form an acronym that come from the first letters in the Greek words for "Jesus", "God's Son," "Savior".

 

Now, back to your family's denial of your celiac disease, I think you can relate to this:

 

[nanny marley]

Thankyou for that information yes I totally relate to that it's a very good read and I've felt like that too to the point were going out for dinner was aniexty before I even left home and it's funny her name is jean because that was my grandma's name and I also  believe she  coeliac undiagnosed because I look back now and she couldn't tolerate most things like me unfortunately she got bowel cancer it's such a shame it's so unrecognised by the medical profession and by people too who do t suffer it because it can be very hard living with it so thankyou so much for this