Need Help With Diagnosis - Please...

[AmiLouise]

I am a 23 yr old female who has had 'I.B.S' for the last 5 years or so. It was like I just woke up one morning with it. I began getting diarreah every day regardless of what I ate or drank, which then caused panick attacks and resulted in me having to leave my job etc. Thankfully, I managed to get my life back on track with the help of some hypnotherapy, but my symptoms have never got better. I went from 9.5 stone to 7 in around 2 months, and when I went to my doctor desperate for help, I instead got referred to a local anorexia clinic (which I never attended for obvious reasons!) After seeing a different doctor, I then got 60 immodium a month on repeat prescription which I have now been taking for the last 2 years or so. Every day, I take a minimum of 2 immodium but still get diarreah every day, it just means that by midday my symptoms have worn off (always worst in the mornings). However recently, things have started getting worse. My stomach goes in to spasms as I eat - you can actually see the muscles pulsating, and it looks awful! I constantly have gurgling sensations and it makes me not want to eat because its like food is just rushing straight through me as I'm eating it. I have 0 sex life as it is so painful and periods are a nightmare because my stomach always hurts so much. I am always really tearful and cant ever see this getting better. Last week, I lost some blood during one of these episodes of diarreah, and so a different doctor rushed me for blood tests as he thought I may have ulcerative colitus. These came back negative but now he's decided that he thinks I should have the blood test for Coeliac, which i had yesterday. Not knowing much about it but reading a lot, I do have many of the symptoms. However I have very little faith in my doctors after yrs of being fobbed off and made to feel like its all in my head. What are the chances of these bloods coming back to say that I dont have coeliac? And if he tells me I dont have it, is that final or are there other tests that should be done to ensure he's right? I just want a diagnosis so I can get back to being the happy outgoing person I used to be - but I dont necesarily want Coeliac to be the diagnosis I get! I just need some advise. I'm at the end of my teather and cant take much more of being made to feel like I'm going mad :-(

[mushroom]

Welcome, AmiLouise. I hope we can help you a little.

Just to get it out of the road, I do not believe this is all in your head, I believe it is all in your small intestine, and I do believe "it" is gluten, unfortunately.

Your history is familiar to many of us, the IBS "headcase" especially if we happen to be women. There must be a special med school class on female headcase behaviour since doctors manage to ascribe so many of our symptoms to it. Your symptoms are fairly classic for gluten intolerance/sensitivity; whether they meet the criteria for celiac disease or not remains to be tested. It is possible, however, to get a negative result on the blood tests and still have celiac (and go on to have a positive endoscopy with biopsy). Just to make things more confusing, it is possible to have a positive blood test and negative biopsy. Both tests are only about 80% reliable. (For the record, a positive blood test is usually followed by referral to a GI for endoscopy with biopsy.)

However, even if all your testing is negative for celiac disease, it is possible to be non-celiac gluten intolerant, which requires that you eat a gluten free diet just as if you had celiac disease, because damage is being done to your body by gluten. Celiac is one form of gluten intolerance which damages the villi in the small intestine and produces specific antibodies in the blood. They don't yet have any tests for non-celiac gluten intolerance, which can cause nerve damage, depression, anxiety and panic attacks, menstrual and fertility problems, other autoimmune diseases....

So many of us have to settle for the grey area of gluten intolerance, quit eating gluten, and get better. So don't get too hung up on the diagnosis, although it is nice to have it to hang your hat on. Because it does look like a gluten free diet is in your future, if only to give it a three-month trial and find out if that is what is causing your problems. I know you don't want gluten to be the answer, but I have to tell you I think it probably is

Let us know how your testing turns out, and don't quit eating gluten until all testing is finished.

[magnesium]

Hi i have celiac disease but it took 11years to get a positive diagnosis,i should of just went on the gluten free diet back then if it does not work you have nothing to loose.also ther is a researcher in the usa doing stool testing for celiac disease or gluten sisitivity same thing really and he is picking up a third of the population with his method.his name is dr fine he is a highly respected celiac disease researcher the web site is www.enterolab.com.my sister keeps getting negative tests as she was getting really sick.but he tested her positive on his test.she has been on the diet and is doing much better.see it shows up in the stool well before it shows up in blood tests.it only shows up in the blood when you are in the late stages of the disease but buy then some things are irraversible.once on the site click on the reasearch and education link you might be iterested in what you read.anyway let me know how you go thanks.

[AmiLouise]

Thanks both for your advise, it has been really helpful. I just wish I would be taken seriously by medical people! Thankfully this latest doctor has said that even if the bloods come back as normal, he will still refer me to a gasteronologist to get further help as he is know agreeing that it doesn't appear to just be standard IBS. My hair is starting to get really thin in places, which i'm not sure if that is down to stress or celiac! I just cant ever imagine being happy again like I was 5 years ago, when I used to be able to go out not thinking about whether or not there would be a toilet around! I do have a question though - you say that even if it isn't celiac, you think it may still be gluten related and after all of the gluten testing, it may be an idea to come off gluten all together... my worry is, if it isn't gluten and i go on a gluten free diet and things dont improve, will I be able to go back on to it or will my body have become so used to it that i will then develop an intolerance? I am so confused by it all, there is no regular pattern of what I eat that triggers all of this, sometimes I can have a bowl of pasta and be fine, but then 2 days later I have pasta again and be really poorly. But the same can happen with Salad!! I've kept that many food diaries and seen that many nutritionists, but none of them have ever even suggested celiac, they've just discharged me as my food diaries dont show any link and it confuses them so they just tell me to continue with the immodium! Surely it cant be healthy taking 2 immodium every day of your life? Thanks again for your help I really appreciate it. Ami

[mushroom]

If gluten is not a problem for you, stopping it and then restarting it should have no effect. In fact, doing this is called a gluten challenge. By clearing your system of gluten and then reintroducing it, you can pinpoint whether you react to it or not - it does not create an intolerance, it confirms an intolerance. Gluten sensitivity usually has a triggering event, physical or emotional trauma, high stress, childbirth, have all be reported, and mono can set it off. There are multiple triggers. That is why having the gene for celiac is only predisposing - if you never have a triggering event you don't develop the disease.