Do I Or Don't I?

[Fluffyblue]

I've been lurking for a few weeks now, reading all the posts, and gathering a lot of information and this seems to be one of the best resources on the web to find out info on celiac disease.

I have been suffering from what my docs told me was IBS for about 15 years now - never been properly diagnosed, and several times a year I will go to the doc with bowel problems and be prescribed anti-spasmodics, which do nothing for me.

From reading the posts on this forum, I am forming the impression that I am suffering from celiac disease, but I am still a little sceptical about my self diagnosis, and I'm trying to stay open minded because I don't want to jump to conclusions.

My symptoms are: -

Bloating

Mainly constipation and sometimes diarrhea

Bowel pain - in the ileum region of the small intestine

Extreme tiredness

Migraine

Knee pain

Indigestion

Terrible wind and trapped wind

Irritibility

Inability to concentrate at times

I suppose my main concern is that I have read that most people have pain in their upper bowels. The other point is I recently did manage to go to the docs and request a blood test, which I have now had. The test came back negative (they tested tTG).

To add to this, for the last three months I have been following an anti-candida diet as prescribed by a natural health physician who tested me using a VEGA/BEST test. I'm not sure on the accuracy of those tests, but I was desperate because I was sick of feeling ill all the time. For the first month I did not eat anything that contained dairy, yeast, fermented food, sugary food(or anything containing sweeteners), alcohol and anything which was 'refined'. I was allowed to eat wheat, rye and oats as I tested okay for those. For the first two weeks things were great - I never had a problem. Then I started to get bloatedness and lower bowel pain again. When I went back at the end of that first month, the tests showed an intolerance to wheat and eggs (which hadn't show up in the first test). So for the second month I cut out wheat. After two weeks I was still having problems, not as bad, but the problems were still present. At that point I decided to cut out oats and rye as well. From the following day my symptoms disappeared. I kept this up for a month, then tested again. My 'intolerance' to wheat, according to the VEGA machine, had deteriorated further, but I hadn't had any. At the end of the second month, when I had done 5 weeks of no wheat, oats and rye, I went to the docs for the bloodtest. He advised me that I DID NOT NEED TO BE CONSUMING GLUTEN to have this blood test. I hedged my bets and did have a small amount every day - whether it be a Ryvita, oats, a chip with wheat on it and a barley malt drink. I was pretty poorly for the weekend that I did this, and went for the test on the Tuesday. As mentioned above, the tests came back negative.

My questions are: -

1) Are my symptoms typical (I know that there is no such thing as typical, but this lower bowel pain is worrying me)?

2) Could my test have been invalid because I wasn't consuming gluten?

3) Is it normal to feel lousy after consuming 'gluten' for a day, feel okay the next two days, and then get bowel pain on the third day?

Sorry this is such a long message - if you managed this far thanks for reading!

Michaela

[danikali]

You have A LOT of the same symptoms as me! I have knee pains all the time, bad constipation where I won't go for like 2 weeks until I give myself an enema, and 500 more symptoms. Do you also get alternating "D?" Anyway, I am just a little bit more into this, or maybe the same as you right now because I am finally going to the GI tomorrow to get blood tests and I am sending my enterolab tonight. I've been on gluten for the past month and a half and hopefully that is long enough. But for you, I don't think that just one little weekend of eating gluten free will give you an accurate result. I read somewhere it takes from 3 weeks to 3 months of consuming gluten to get accurate blood tests. Plus, I also read to really get a good reading of this disease and if you have it or not is to get as sick as you were when you first started noticing something, meaning, eat AS MUCH GLUTEN AS YOU CAN UNTIL YOU CAN'T TAKE IT! Okay, that's probably realllllllllllly unhealthy, but that's what I'm doing because I want to get my result and move on!

But also, did you feel better while not eating any gluten? Did your pains go away? I'm sure the constipation and regular bowel movements, I'm assuming, would take a while, probably the longest, to get back to normal. But if you were feeling better on the the gluten-free diet, that's a huge sign! But of course, I know, as I am getting tests done for my own sanity, you want to get that "positive" result so you know FOR SURE.

Anyway, maybe you should do the gluten challenge to get your result, ooorr you could go through enterolab, which I have learned you don't have to be consuming gluten to get an accurate result. They can test your genes for Celiac, as well as sensitivity that could turn into Celiac, if not yet. I'm doing all the tests I can and then starting my new life Gluten free starting Thursday, no matter what!

Oh, and I also got the old "IBS" diagnositc excuse. I don't believe it. There is ALWAYS an underlying problem for things like IBS! And did your doctor rule EVERYTHING out before diagnosing you with IBS? I doubt it! They are waaaaaay too quick to through that term at you and kick you out with some pointless medicine or tell you "eat more fiber!" At least my doctors were. I got the IBS excuse before even being sent to a GI!! And even now, it's been about 6 years and I am finally making the connection, on my own because the GI's or any other doctor has not even brought it up!?!?!

Anyway, I hope you get your answers! Good luck!!!

[Fluffyblue]

Danikali - thanks for your really quick response. What you've said made a lot of sense to me. We do sound pretty similar. Yes, I do mainly suffer from Constipation, but I do occasionally get diarrhea, probably two or three times a month.

I live in the UK, so Enterolab is probably out for me.

We have a different system in the UK, under the National Health Service - where you are treated by your GP (General Practitioner) in the first instance, who then refers you to a specialist if deemed necessary. I've never been referred to a specialist - I did pluck up the courage to ask to see a dietician once, only to be asked "And what good would that do you?". You're right - I've never had any diagnostic tests for IBS, it's just been a case of going to the doctors, saying I have bowel pain etc, and being told that its IBS and handed tablets. I think my next plan is to write to my doctor, saying that I am disappointed in the test results, and particularly that when I am gluten free I feel great, but when I eat gluten it all comes back to me.

If a person is diagnosed with celiac disease in the UK, they can get special foods on prescription from their doctors. This is generally cheaper than buying gluten-free foods at a supermarket, as they cost a lot of money. You can get what the NHS call a 'prepay certificate' where you pay a certain amount of money a year (I think it's £92.00, which is probably just over $45), so a diagnosis is good. Also, if I do have celiac disease and I continue to eat non-gluten-free, I am running the risk of getting a serious disease - who wants that?

As in my previous post, I have been on such a restrictive diet that's its been pretty easy to see what my body is reacting to when I introduce a suspect food.

Hope you get a good result from your tests - its frustrating when you think you know what is causing a problem, only to be given the wrong advice leading to a wrong diagnosis. I will be interested to see what your results come back as.

Michaela

[danikali]

Wow, the UK! Hmmmm........have you checked Enterolab to see if they could still ship it to you? Then maybe you could give the results to your doctor and still get the discounts....?

But about the whole "going through your GP first." I don't get that. I mean, that's really what it's supposed to be like over here too (I live in NYC) because you are supposed to get the "best" doctors by referal, but if you are paying these doctors, and it is literally YOUR LIFE on the line here, I think you need to let go of any inhibition you might have for a second and tell your GP "YOU NEED TO REFER ME TO A GI DOCTOR WHO SPECIALIZES IN CELIAC DISEASE BECAUSE THIS IS WHAT I SUSPECT AND BECAUSE I AM PAYING YOUUU, AND BECAUSE I KNOW MY BODY BETTER THAN ANYONE!-Thank you! "

After going to about 15 doctors myself (since this all started), I am realizing this and really taking matters into my own hands.

"Also, if I do have celiac disease and I continue to eat non-gluten-free, I am running the risk of getting a serious disease - who wants that? "

You are very right about that, so I say GET A GI WHO WILL DIRECT YOU IN THE RIGHT DIRECTION or (even though it's scary), start eating anything you want for the next month or so, and then tell your GP that you are sick, you know why, and you want the Celiac panal test. Any doctor (at least in the US) can really give you this blood test and if they refuse, seriously, GET ANOTHER GP!

Anyway, I will keep you informed, as I would like to keep in touch with your story too!

-Danielle

One more thing- didn't you say you tested positive for wheat sensitivity or gluten intolerence? Isn't that enough proof to get your discount and move on with your healthy life??

[Fluffyblue]

Danielle

Thanks again for your speedy response.

Doctors in the UK are actually free, and it's really hard to get on another doctor's books if you are unhappy with your doctor. My doctor is Italian he's kind to the eye (!) but it takes twice as long to make him understand what I want from him. There are other doctors at the same practice (that is what we call our doctor's surgery - there are usually two or three doctors practising per surgery, and it's pretty much the luck of the draw as to who you see!). UK is complicated in terms of doctors, but a free service.

The test I got from my natural health practitioner is not recognised by my NHS (National Health Service) doctor. Open Original Shared Link

I suppose I just want to make sure I'm not 'crying wolf' about this. Half of me thinks it is celiac disease and half of me is just not sure...

Michaela

[danikali]

Well at least try enterolab's website. I didn't see anything regarding where they can and can't sent it to, but maybe if you call them? Or write them e-mail?

Open Original Shared Link

And I'm sure you should ask your doc. if these results would be good enough to be recognized by the NHS in the UK.

But if might be worth it........?