Struggling To Get Dr To Test For Celiac.

[missingno]

Hi everyone, I'm Ellie,I'm 21 years old and live in the UK. I've had stomach problems literally for as long as I can remember, my mum tells me that as a baby I had bouts of terrible vomiting, colic, constipation and dihorrea, and as a child, I remember always feeling bloated and having stabbing pains in my stomach. In fact, people who know me are so used to me being doubled over in pain for a few minutes they just say 'oh its Ellie having one of her stomach attacks, she'll be ok in a minute.' Honestly I can't remember the last time I had a day where I didn't feel bloated and hugely uncomfortable, when simple things like bending over to reach something off the ground or jumping up and down or even just having a hug off someone didn't feel so awful.

I've been to the doctors several times over the years, but recently I've just sort of given up... I guess when you live with discomfort all your life you just learn to get on with it.

Over the past year or so I've got really fed up, especially since I've been having these night time episodes of severe stomach pain and nausea/vomiting, on 3 occasions they have been so bad I've wanted to call for an ambulance, but I didn't. Doctors have usually told me that my stomach upsets were 'stress' or 'anxiety', and IBS, which led to doctors telling me to exclude things from my diet, which worked for a while, dairy products do upset my stomach, and when I excluded them the pain lessened (though never went away!) However, now my stomach reacts to pretty much anything I eat, but when I go to the drs they just tell le to not eat what is upsetting me, which basically translates to 'stop eating' for me, as everything sets it off.

I've never had tests for anything done... Celiac, h pylori, crohns... Because the doctor says that the absence of diarhorrea (im usually constipated and have dark stools that are hard to flush) means I can't have any of these things. He won't test for celiacs and insists that I would be underweight if I had it. I'm not, I have a bmi of 25.6.

I'm really, incredibly fed up with living like this. I'm so uncomfortable yet no one takes me seriously. It ruins things for me, the most recent example being my best friends 21st because we went out to eat and I had a particularly bad 'stomach attack.' Even when I am not in agony, I'm bloated and uncomfortable, which is tiresome, and repeatedly complaining about it makes me feel bad.

I'm not saying that I definitely don't have IBS, but it is the reluctance of the doctors to even consider anything else because of the absence of diarhorrea, even though I have bloating, pain, lethargy, pretty much constant nausea and other symptoms that come and go.

Has anyone else had an experience like this, and could suggest what I could do? I'm so fed up of living like this.

Eleanor

[adab8ca]

oh yikes, this sounds awful...

many many celiacs are not underweight (me one of them!) and many celiacs do not have diarrhea (me again!)

My symptoms were neurological and my diagnosis was a fluke, with the neurologist running a bagillion tests to see if anything stcsk out. My celiac antibodies were off the charts.

OK, my thoughts

1) Is it possible to get another Dr?

2) Can you tell existing Dr. that you HAVE diarrhea and want the test? A white lie, but if that is his stupid criteria, I say go for it

3) Give the gluten-free lifestyle a really good try. Do you need a formal diagnosis? Try it for a while (a month?) and see if you feel better. I would suggest that you eat whole, unprocessed foods an see if your health improves. Many people have not gotten official diagnosis but feel much better after going gluten-free.

Good luck! Keep us posted!

Ada

[Skylark]

I'll second adab8ca. Is there any way to get to a different doctor?

I know the gluten-free food allowance would be useful, but you may just have to go gluten-free on your own and see if it helps.

[JustJanet]

This is kind of sad/funny, but my dr. didn't test me for it for the OPPOSITE reason. I have nonstop diarrhea and he told me that Celiac disease usually doesn't present that way; he said it is usually more just bloating and gas. I'm kind of thinking that I DO have it (hoping?) though because the only time my diarrhea stops is when I stop eating things that seem to contain gluten. Not sure if it is random coincidence or if I'm right. When I asked if he'd done the Celiac test, he said he hadn't but would if I would like. I've had severe diarrhea since Thanksgiving, and lost 5 pounds last week, despite eating a ton.

[mushroom]

This is kind of sad/funny, but my dr. didn't test me for it for the OPPOSITE reason. I have nonstop diarrhea and he told me that Celiac disease usually doesn't present that way; he said it is usually more just bloating and gas. I'm kind of thinking that I DO have it (hoping?) though because the only time my diarrhea stops is when I stop eating things that seem to contain gluten. Not sure if it is random coincidence or if I'm right. When I asked if he'd done the Celiac test, he said he hadn't but would if I would like. I've had severe diarrhea since Thanksgiving, and lost 5 pounds last week, despite eating a ton.

Welcome, JustJanet. I think if I were you I would take the good doctor up on his offer. Although three weeks (since Thanksgiving - although perhaps you had milder diarrhea before??) is not a long time in the scheme of celiac, and your weight loss could be sign of dehydration with all that diarrhea (you need to drink an electrolyte supplement) you have nothing to lose by having the test..

[The Horticulturalist]

Ellie,

Sorry to hear about your doctor issues, that's very frustrating.

I am from the UK and now live in the USA, my son was recently diagnosed here with celiac and I suspect I have it too, though they messed up my testing, it's a long story. My brother is going to a 'well man' clinic in the UK this week and I have prepped him to ask for the test in addition to other bloods, we'll see if they do it or not.

I have a couple of suggestions for you,

1. See another GP, are you in a group practice? If you are you can see any GP there, try and find one you think is sympathetic. If not you can change your GP, which is a bit of a hassle, but you're getting nowhere at the moment with your current Dr.

2. Boots have an over the counter blood test called Biotech Biocard Celiac Test, which is not a replacement (I don't think) for the blood test that your GP would do, but if it gives you a positive it would help your cause in getting the Drs to take you seriously. If it's negative I would not read that as meaning you do not have celiac though.

3. This is the NICE guidlines relating to the diagnosis of Coeliac disease. Open Original Shared Link

Page 9 has recommendations on when to offer testing, from your post it seems to me that you have "recurrent abdominal pain, cramping or distension" It also states that doctors should "Offer serological testing for coeliac disease to children and adults with....irritable bowel syndrome"

4.Your GP is wrong to say that you would be underweight with Coeliac, and he's wrong to say that you would present with diarrhea, only 30 or 40% of adults with Coeliac present with diarrhea.

5. If you have coeliac disease you will not be eligible to get gluten free foods on prescription unless you go the route of having a blood test and endoscopy for diagnosis, I know that would be a consideration for me if I lived in the UK. Don't go gluten free until you have completed all your tests though.

If I were you right now I would contact BUPA and pay to see one of their private GP's, I think you will be taken more seriously there because you are paying for the service. I know it goes against the grain to think of paying to see a GP in the UK, but I would scrape together the cash and do it. You'll be able to see someone quickly and hopefully have them do all the tests you need, I think it would be worth every penny and money well spent.

Open Original Shared Link

Please let us know what you decide to do and what your results are.

[JustJanet]

Welcome, JustJanet. I think if I were you I would take the good doctor up on his offer. Although three weeks (since Thanksgiving - although perhaps you had milder diarrhea before??) is not a long time in the scheme of celiac, and your weight loss could be sign of dehydration with all that diarrhea (you need to drink an electrolyte supplement) you have nothing to lose by having the test..

Thank you for the kind welcome Mushroom. I've actually had a lot of other stomach/bowel issues for as long as I can remember. This is just the latest and worst. I don't want to hijack Ellie's post though, so I will open one of my own I think.