Self-Diagnosis?

[loubyloo]

Hi, i was looking for some thoughts and advice. For about a year now i have had GI problems that i've never really bothered my GP about. Bloating, waking up in the morning feeling really full, gas and passing huge stools - so big they frequently block the toilet. I saw a doctor about the latter issue and given that i was only going once a week or so they put me on a fibre supplement and told me to drink more. I eat healthy and am vegetarian and the last thing i needed was more fibre. However after months it seemed to ease up but occasionally i'd have bouts of loose, soft foul smelling stools. I thought nothing of it.

About 3-4 months ago i came down with what i thought was a stomach bug. Nausea, diarrhoea etc however after 2 weeks the nausea was still there so the doctor put me on antacids. That didn't help so i got stronger ones and a gastic-emptying/anti nausea drug. After 2-3 months of that the nausea has eased up but i would still have frequent loose, smelly, floating stools. I went on holiday and got very bloated and constipated again but then i had diarrhoea again for 2 weeks. i was tested for infection but was negative. After 2-3 months of that the nausea has eased up but i would still have frequent loose, smelly, floating stools. Esp in the morning. People suggested lactose but i tried eating it and not eating it and found no difference - it was intermittent but i coudln't work out the pattern. I found the best way to not feel sick was eat virtually nothing. This meant i could easily recollect what i'd eaten the previous day. I was ok for a few days then i ate cake 2 days in a row and the following morning each time i had stomach discomfort, those same loose stools and feeling of fullness. I watched my wheat intake for over a week now and if i have none i'm fine, as soon as i have wheat i have those stools in the morning and the stomach issue.

What do people think? Can anyone offer any thoughts? I have spoken to my GP and he has advised me to get a book out the library and see what i think then come and see him in a months time. I think there is a huge fad at the moment making wheat intolerance fashionable and i'm seriously not one of those people - i just want to feel better. Could it be Coeliac? I always thought symptoms woudl be more severe.

I'm sorry for the hugely long post i just wanted to explain as no-one seems to listen or have any answers.

Thanks

[ravenwoodglass]

The fact that celiac is so underdiagnosed in this country is part of what makes folks think this is a fad. Testing is not very reliable with up to 30% of us showing up negative with blood tests and biopsy.

You do sound like you are reacting to gluten. You should continue on a full gluten diet for the next month and then go to the doctor and ask for a blood test. If you want to have a biopsy then continue eating gluten until that is done. After all your testing is finished you should give the diet a good strict try for a few months.

That said you seem to have gone off gluten for a time and then added it back in. When you add it back in you have a reoccurance of symptoms. That is the best diagnostic tool there is and is called a gluten challenge. While you don't need a doctors diagnosis sometimes a diagnosis is valuable because the doctor should be checking your vitamin levels and for anemias. It is also advised that we have a bone density test as celiac malabsorption can lead to osteopenia and osteoporosis.

[Kay DH]

My GI and other problems started a year ago, a couple of weeks after getting somewhat minor flu (the trigger). I am surprised at how little doctors know about gluten intolerance, and how easily they dismiss it or assign symptoms to other causes. My blood tests were negative for celiac, perhaps because I was gluten free for a couple of months before the test. My endoscopy was also negative, but the GI only had me on gluten for a week and only took 1 biopsy (he thought I had diverticulitis instead, which was negative). I probably have celiac, but the tests indicate otherwise. When I get cc from foods that were supposed to be gluten-free my reactions include D, C, cramping, and bloating for a minor hit; larger hits include lethargy, brain fog, stiff joints, achy muscles, and mood swings. It takes about 3 days for the GI problems to resolve and a week for the others to go away.

Gluten is in many vegetarian dishes, although sometimes hidden in other forms such as "hydrolyzed vegetable protein." It would probably be handy for you to do more research on celiac, gluten intolerance, and gluten sensitivity, but make an appointment now with the doctor for a celiac panel blood test. For this test to be fairly accurate you need to be on gluten, and probably the equivalent of 3-4 slices of bread a day. Even if the test is negative, you could have gluten sensitivity. It would also be useful for you to have allergy tests for wheat and other potential allergens, if these have not been done. Genetic tests can be useful for excluding celiac; most people with celiac have the HLA-DQ2 and (or) HLA-DQ8 genetic marker. The gluten free diet gets easier through time, and I'm definitely healthier than before I went gluten-free. With gluten , my whole immune system was taking a hit.

[ravenwoodglass]

My GI and other problems started a year ago, a couple of weeks after getting somewhat minor flu (the trigger). I am surprised at how little doctors know about gluten intolerance, and how easily they dismiss it or assign symptoms to other causes. My blood tests were negative for celiac, perhaps because I was gluten free for a couple of months before the test. My endoscopy was also negative, but the GI only had me on gluten for a week and only took 1 biopsy (he thought I had diverticulitis instead, which was negative). I probably have celiac, but the tests indicate otherwise. When I get cc from foods that were supposed to be gluten-free my reactions include D, C, cramping, and bloating for a minor hit; larger hits include lethargy, brain fog, stiff joints, achy muscles, and mood swings. It takes about 3 days for the GI problems to resolve and a week for the others to go away.

Gluten is in many vegetarian dishes, although sometimes hidden in other forms such as "hydrolyzed vegetable protein." It would probably be handy for you to do more research on celiac, gluten intolerance, and gluten sensitivity, but make an appointment now with the doctor for a celiac panel blood test. For this test to be fairly accurate you need to be on gluten, and probably the equivalent of 3-4 slices of bread a day. Even if the test is negative, you could have gluten sensitivity. It would also be useful for you to have allergy tests for wheat and other potential allergens, if these have not been done. Genetic tests can be useful for excluding celiac; most people with celiac have the HLA-DQ2 and (or) HLA-DQ8 genetic marker. The gluten free diet gets easier through time, and I'm definitely healthier than before I went gluten-free. With gluten , my whole immune system was taking a hit.

Hydrolized vegetable protein if it is derived from wheat it must be labeled as from wheat either in the name itself ie. with (wheat) or in the allergen statement. I don't think it is made from rye or barley just mostly soy and perhaps sometimes wheat.

The genetic tests can NOT exclude celiac. While most celiacs are DQ2 or DQ8 there are at least 9 other genes associated with celiac.

[loubyloo]

Thanks for the comments. I've ordered the book (from the library) the GP told me to get -it's by a guy called Brostoff? Anyone heard of him?

I wanted to ask if people experience symptoms the following morning after eating gluten? One thing that makes me think its not is that i always thought symptoms would be much worse and more violent than they are, and they clear up within a day sometimes while most of you seem to report symptoms continuing for a week or more, even if you've stopped consuming gluten. Obviously i'm very early into monitoring my symptoms, its only been 2 weeks since i first made a link.

I'm not losing any weight either, isn't that normally a major symmptom?

I'm not sure about non GI symptoms - i've been on medication treated depression for about 10years, anxiety and i'm also anorexic (although maintaining a reasonable weight for some years now) so symptoms like tiredness are difficult to pinpoint to food and lethargy, well there's so many causes of that but when i was at school i had so much get-up-and-go which i just haven't had for years.

Its so nice to able to talk to someone about this, i really appreciate your help.

Thanks

[mushroom]

Each symptom pattern for a celiac individual seems to be unique; unique in its severity, unique in its duration or ability to tolerate it, unique in its pattern. Some lose a lot of weight, some gain weight and cannot lose it. Some have diarrhea, some have constipation, some poor souls have alternating D and C. Some have anxiety and depression - others have no mood disorders. Some have peripheral neuropathy and and others have no neural symptoms at all. Some have muscle and joint aches and pains, some go to full-blown rheumatoid arthritis; some have dermatitis herpetiformis, others have eczema, while still others have psoriasias. Many have hyothyroidism; many more have osteoporosis. These symptoms can occur in any combination, which is what makes it difficult for doctors (especially the uninformed) to diagnose. Some people have an immediate tingling in their mouths upon eating a gluten food, and have ulcers in theirs mouths and cracks at the corners of their mouths; others don't react until the next day and have cramping pains and diarrhea, or no cramping but just pressure and pain under the ribs. Some people have only relatively brief symptoms, for others it lasts for days. It goes on and on, this list of symptoms. Although doctors will only (usually) diagnose from the usual tests (and you should do these first), it is possible to be intolerant to gluten and test negative on all the tests. So whatever the test results say, you should try eliminating gluten from your diet for at least three months to see if it works for you. Even if you see only some improvement, it could mean gluten is the major problem and you could have some secondary food intolerances. Most people who have a damaged small intestine with have problems digesting lactose, many celiacs are also intolerant also of corn/soy, perhaps even nightshades or tree nuts.

I hope this does not sound too depressing for you, but you are unique and how you react to gluten will be unique. And ultimately, after all the tests, only you can decide if gluten is a problem for you by eliminating it and seeing how you react.