Is this really IBS??

[Deb24]

I have recently been diagnosed with IBS Pain predominant. I have been struggling for 3 years with symptoms that started suddenly. I lost around 4 stones in a few months, couldn't eat, had diarrhoea at first but then turned into constipation probably due to drugs I was on. Bad pain around left side stomach & back. Feeling depressed, joint pains, fatigue, hives etc etc.  I have had every test possible however when I had an endoscopy I wasn't eating gluten & wasn't told that I should be. Nothing showed up on any of the tests other than a high fit test which was over 400?? Nothing was ever explained about this. I tried cutting out dairy & then gluten. Some of the symptoms have improved giving up gluten, I used to get flare ups where I couldn't get out of bed for 3 days & this has stopped since giving up gluten. I recently started pregablin which is helping with the pain. I still have most of the pain when I wake, sometimes at 3am or if I'm lucky 6am. I have to take Oramorph to ease the pain in the morning. I tried having a small amount of gluten the other day and the symptoms flared again. I get a really bad tight band feeling around my waist. Has anybody else experienced anything similar or have any advise at all to help me please.

[plumbago]

17 minutes ago, Deb24 said:

I have recently been diagnosed with IBS Pain predominant. I have been struggling for 3 years with symptoms that started suddenly. I lost around 4 stones in a few months, couldn't eat, had diarrhoea at first but then turned into constipation probably due to drugs I was on. Bad pain around left side stomach & back. Feeling depressed, joint pains, fatigue, hives etc etc.  I have had every test possible however when I had an endoscopy I wasn't eating gluten & wasn't told that I should be. Nothing showed up on any of the tests other than a high fit test which was over 400?? Nothing was ever explained about this. I tried cutting out dairy & then gluten. Some of the symptoms have improved giving up gluten, I used to get flare ups where I couldn't get out of bed for 3 days & this has stopped since giving up gluten. I recently started pregablin which is helping with the pain. I still have most of the pain when I wake, sometimes at 3am or if I'm lucky 6am. I have to take Oramorph to ease the pain in the morning. I tried having a small amount of gluten the other day and the symptoms flared again. I get a really bad tight band feeling around my waist. Has anybody else experienced anything similar or have any advise at all to help me please.

Hi, This sounds awful and I'm so sorry you are going through this! What I can say just reading through your comment is: I'm surprised they didn't tell you ahead of your endoscopy to keep eating gluten, that they could not do the test unless they were. (Well, that's what they should have said!). A positive FIT test means there is blood in your stool - commonly, it may be coming from your digestive track, or it could be from a cut or other lesion in your anus or rectum. It is something you absolutely need to follow up on at any rate. Get an appointment to talk about that. Finally, it almost sounds like you have a severe autoimmune condition like Crohn's or indeed Celiac or both. I don't know. None of us who comment on here really knows what to advise based on the limited expertise we have and the limited amount of information we receive. Therefore, please do make a follow up appointment to talk about all of these possibilities. And check back in with us.

[Deb24]

Thanks for your reply. The doctors have just told me that it is IBS & are not doing any further tests which is why I thought I might try & figure it out myself. Just thought that there may be people with similar experiences.

[plumbago]

1 minute ago, Deb24 said:

Thanks for your reply. The doctors have just told me that it is IBS & are not doing any further tests which is why I thought I might try & figure it out myself. Just thought that there may be people with similar experiences.

Good for you to look for people with similar experiences - give it some time. People may chime in here.

[Scott Adams]

I would simply add that "IBS" isn't a real diagnosis, it's a set of symptoms that often has an underlying cause or trigger. To be diagnosed with IBS, in my non-medical opinion, basically having a doctor tell you exactly what you already knew when you went into his/her office...that you have IBS. To recover from IBS you'll need to determine whether or not it's food-related, which it often is, and eliminating the possibility of celiac disease should be a first step. The fact that you've been gluten-free in the past tells me that you suspect gluten.