A Little Guidance?

[Hamster101]

Hi there...

Well, I'm new to this site, and this is my first post, so I hope this is a valid question. I have not been diagnosed with Coeliacs Disease, but after two and a half years of pointless doctor's visits and forgotten blood tests (which I don't even got sent off, considering she actively tried to talk me out of them) I gave up trying to find out what was wrong with me through a doctor's office and did a little experimenting of my own.

While at sixth form I began getting horrible pains in my abdomen, seemingly for no reason, that kept me out of school for a few days at a time at their worst. It was here I tried getting a doctor's help, but I was dismissed (probably as a teenager trying to get out of classes) and told there was nothing wrong with me. I didn't do anything about it for another two years, but by the end of my college course I had enough and tried a few diet alterations.

I spent six months in Australia the following year, and narrowed down that I seemed to have an issue with both pork and dairy. While I wanted the stomach aches to stop, my own naivety, love of cheese and my 'adoptive family's' diet did not allow me to eradicate dairy all together, though the symptoms got less severe when I stopped eating the pork.

It was when I returned to England and found that, despite avoiding dairy altogether for three months, I was still having problems, that I decided to try a different tact. keeping clear of the already established criminals, I now eradicated wheat from my diet, starting shakily as I went about learning what I couldn't eat and finally keeping off it completely.

A week down the line I feel like a new girl. I'm still amazed at the change. I can cope with low levels of dairy (cheese and yogurt) and am going to try pork around christmas.

The problem now is how I word this to the doctor to see if my suspicions are true. I tried eating oats only today and severely regret it this evening, adding to my confirmation, but I'm not sure how I should approach my doctor with the details. I'm aware from my own and others' experiences that doctors don't like being told by a patient what's wrong with them, but after three years or so of discomfort I feel like I need some closure to get on with my life and start looking after myself properly.

Does anyone have any advice on how I should approach my GP?

Thank you for reading xx

[Takala]

I'm not sure how one approaches a British physician on this.

I would research what the symptoms are on YOUR side of the pond, see how many you can match to yourself, and then maybe go and say, every time I eat chips that come with battered fried fish I feel really sick to my stomach, or have to go too many times. There probably is a food that is supposedly a sure fire symptom maker.

In America, they seem to want to see somebody who is wasting away, but then it's an eating disorder, fibromyalgia, or self esteem issue. They really are bad at this here.

You are fortunate in at least you have universal health coverage, as the American system still currently allows financial discrimination against the "pre existing condition" as we slowly lurch in fits and starts and retreats towards something that might cover more people - altho the barbarians running in the current election are vowing to overturn this new law which is being implemented too slowly anyway.

I still have no "official" diagnosis, because of some really bad medical specialists who were insisting that my neurological symptoms had to be caused by "something else," but told my current doctor to put down a wheat "allergy" as I could not and would not be forced to ever eat gluten again no matter what test, as I had so many different symptoms and several concurrent conditions which resolved once on a grain free diet. I have, years later since added back in some gluten free grains, dairy, and I can even eat bacon again if I want to. Like I said, I don't know what to tell you, my current doctor believes me because he saw the test results and I told him that Dr. Clueless looked at my bone scans and brain scans and all my OTHER symptoms and still was ignoring the significance of brain lesions, partial color blindness, loss of limb sensation and reflexes, ataxia, arthritic flares, bone loss, rashes, heartburn, kidney problems, gall bladder flare ups, etc. But he then ran a blood panel, and I of course didn't have enough antibodies at that point, to get stamped with the Seal of Approval. I also had told this neuro doc that I could STOP the visual disturbances with a grain free diet, and was told Diet Has Nothing to Do With Your Symptoms. Nevermind that I'm also in the ethnic groups with the highest incidence of celiac.

With the better, regular doctor, we agreed that calling it "wheat allergy" might be the simplest way to keep the rest of the medical profession from cross contaminating me, even if it is not technically accurate, it goes along well with the Official Medical Narrative of my having other allergies, and it does work, for example, on the questionnaires you fill out for tests, "are you allergic to anything?", I put down wheat and wheat proteins.

You also might end up being in one of the DQ 1 groups which are showing up in a small population of gluten intolerants, instead of the DQ2 or DQ8 's which get to be Officially Celiac.

[Dixiebell]

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[Hamster101]

Hi Takala, thank you for the reply.

I have already done a lot of research into it to try and match my symptoms, which is why I took Lactose Intolerance as a first guess, because a lot of those symptoms also fitted with the problems I was having.

Doctors over here hate it when people walk into their surgery with an idea of what they think is wrong with them. it might be because they find it very hard to diagnose something else when someone already thinks they know what is wrong, or they just don't like being told how to do their job, but they are very touchy when it comes to self-diagnosis. That's why I'm worried about going in there and suggesting I know what's wrong.

My main symptoms are stomach cramps that often have me doubled over. These move. usually about a few hours after eating, maybe a little less, I get a gassy and discomfort feeling in my upper stomach and chest, resulting in reflux issues and eventually pain in the upper stomach. Over the next few days this passes down through my lower stomach until I get a burning around my behind, which, when I go to the toilet, is always runny and pale, and sometimes contains undigested food.

I also have problems actually 'going'. If I dont get to the bathroom within about thirty seconds of this sensation, the feeling recedes, I cant go and the stomach ache returns for up to an hour before the feeling returns once again.

Since stopping wheat I can now deal with cheese and yoghurt, things that used to intensify the above symptoms.

I'm not sure if they'd take my indication, being that I can now cope with dairy. my other one is that we eat at my nan's on a Saturday, and she had an obsession with pastry (which is half flour, half dairy). on top of that I would eat a foot long sandwich at Subway on Sunday because I work there, and they feed me for working. Monday to Wednesday used to be hell for me. Now they are like every other day - discomfort free.

Is there a way I can organise this information the doctor would be less likely to sneer at? I'm going to book an appointment on the way to University tomorrow morning. Even then if my doctor wont do the tests, I have a secondary doctor in the University Surgery who might do one, as they have had less experience with my issues before and may take me more on face value than medical record.

[Marilyn R]

It seems like the UK is more advanced when it comes to knowledge about celiac disease compared to the US.

I've worked with doctors for years and exactly understand what you're communicating about going in with a know it all attitude.

My suggestion is to present your chief complaints, or symptoms, and see how your doctor responds. It he/she seems to be heading down the wrong direction, mention that you've eliminated various foods (like _____) but that you've noticed significant improvement when you eliminated pasta or processessed foods. Or "I found out that any protein or veg/fruit was fine. but gravy and/or pudding KILLED me.

If he/she doesn't get it by then, you're seeing a bad GP. But if you've beem gluten-free for awhile, you won't test positive for anything anyway IMHO. At least not here, maybbe over the big pond...

[mushroom]

"main symptoms are stomach cramps that often have me doubled over. These move. usually about a few hours after eating, maybe a little less, I get a gassy and discomfort feeling in my upper stomach and chest, resulting in reflux issues and eventually pain in the upper stomach. Over the next few days this passes down through my lower stomach until I get a burning around my behind, which, when I go to the toilet, is always runny and pale, and sometimes contains undigested food." This paragraph of yours pretty much says it all, except for the duration of the symptoms (like the age they first started).

I don't know if you can generalize about all Brit doctors. My doctor here in NZ is a Brit (but maybe we have contaminated her ) I just go to her and tell her what I have and what I need her to do for me. But then, of course, she's female even though her name is Charley.

If you have only been off gluten for a week it is probably not too late to be tested but you should try and get it done right away, the sooner the better, because obviously you have already started to heal.

[Hamster101]

Hello Marylin,

Thank you for the advice on the doctor. I was worried about how to approach them with such an issue and I guess dulling it down would be the best solution. I have recently changed doctors, because of a fiasco with an ear infection that last much longer than it should have done, and this one seems much more competent, so fingers crossed.

Honestly I dont know what the tests are that they use. My research suggested a blood test is very inaccurate, and that other methods are biopsy and putting a tube down the throat to have a look. Do I have holes in my research here?

x

Hi Mushroom,

Thank you for at least confirming I'm on the right track XD That was my main symptom, and it started as just a stomach ache and the occassional runs when I was 17, three years ago. I'm not aware of it starting any sooner, but I was a rather sickly child, so it could have got lost amongst the many other things I had wrong with me.

Can it be triggered in anyway? That was rediculously stressful time of my life, because of A-levels and my father constantly being on my back, as well as a few others I'm not comfortable mentioning. Other than that, when I was 18 I contracted a rather nasty ear infection that, because of my shoddy doctor, stayed with me for well over a year. It was during this time the symptoms got so much worse and became daily terrible stomach cramps and the runs. Now roughly six months after the end of that, it was continuing as such even though I was otherwise healthy.

I'll talk to my GP today, and see if I can get the test done ASAP. And the two woman doctors I had over here, one British and one Pakistani, were both useless, though the first one actually liked you to tell her what was wrong, so she wasnt quite as bad.

[mushroom]

The standard testing for celiac, antibodies in the blood and/or biopsy, are neither highly accurate, unfortunately - about a 20% error rate. Sometimes it can be that you caught the symptoms early on before too much damage was done or too many antibodies built up, sometimes the GI either does not do enough biopsies, biopsies the wrong areas, or the damage is beyond the reach of his scope, Or sometimes it can be that you are non-celiac gluten intolerant. Now this is a fuzzy area and research is currently being undertaken to clarify those persons who have all the symptoms but test negative. Most doctors don't understand that you can have all the symptoms of celiac and not test positive, and will tell you that it is okay for you to eat gluten. But if you have those symptoms, and avoiding gluten makes them go away, why would you do that???

As for the question of why this started when you were about 17, yes, stress can trigger the onset of celiac. You are born with the genetic predisposition (inherited the gene(s) from one or both parents, and it was latent until triggered by some traumatic event - serious illness, stress, auto accident, childbirth; there are many possible triggers.

So even if you can't get the diagnosis, you have already found the benefits of a gluten free diet and should continue it.

[Hamster101]

Thanks again for the advice, Mushroom.

I went around my surgery this morning, but they were still closed despite their sign saying they should have been open an hour before. When I returned after my morning at University there was a notice in the window stating that, due to situations out of the surgery's hands, the surgery will be shut for the week. The doctor has a family emergency and had to go out of town. Typical.

I think I'll pass on getting a diagnosis and just make sure I drop in and make sure a wheat intolerance goes on my record in case of future medications. Even if they didnt diagnose me I dont think I would be going back to wheat any time soon. The oats I tried a few days ago finally worked their way through my system - the first runs I've had in almost a fortnight. I'm sold.

I feel sorry for the McDonalds I had to dive in though, to relieve that >.>

[Loey]

Thanks again for the advice, Mushroom.

I went around my surgery this morning, but they were still closed despite their sign saying they should have been open an hour before. When I returned after my morning at University there was a notice in the window stating that, due to situations out of the surgery's hands, the surgery will be shut for the week. The doctor has a family emergency and had to go out of town. Typical.

I think I'll pass on getting a diagnosis and just make sure I drop in and make sure a wheat intolerance goes on my record in case of future medications. Even if they didnt diagnose me I dont think I would be going back to wheat any time soon. The oats I tried a few days ago finally worked their way through my system - the first runs I've had in almost a fortnight. I'm sold.

I feel sorry for the McDonalds I had to dive in though, to relieve that >.>

Welcome!!!!! I'm also fairly new to this site but you'll find an amazing group of people here. From what I've learned here if you are following a gluten-free diet your tests might show up negative. You have to decide if you care about getting a official diagnosis. If you don't just stay away from wheat (and gluten), I also have found that I have a lot of food sensitivities to some things that are all right for most people.

I recently had a capsule endoscopy and my GI discovered an ulcer. It's amazing the 360 in his attitude. No longer dismissive and my calls are returned immediately.

I'm an unemployed resource geek so if you ever want me to do any researh just give me a holler!

Loey

Loey