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Need Your Advice

MattUK

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MattUK Newbie
MattUK
Posted

Hey guys. My names Matt and Im based in the London. Im a 32 year old guy and Im convinced I have got Celiac Disease. Ive been going to the doctors since I was 17 complaing of various symptoms and have been brushed off and misdiagnosed for years:-

When I was 15 and suffering from Chronic Fatigue the doctors decided I had glandular fever despite having a negative test. At 17 they told me I was Asthmatic depsite not testing me when I went in with shortness of breath. Ive always been incredibly pale, can remember my friends noticing I was always massively tired even when I was 17. Ive had bad hayfever for 15 years which no drugs help, have been bloated like a pregnant goat for 15 years constantly. Two years ago I had a rash on my knee which they said was fungal and would go in 5 days which only went after 18 months on its own. And now the thing that I noticed on a Celiac Website which has convinced me I have this disease is that the enamel on my teeth has become very thin and has come off in a couple of places. Am I going mad or does it sound like i 99% likely have this disease. Ive also had fluctuating diarohea and constipation for years and get incredibly irritable at the drop of a hat.

I went to the doctor on friday and she snapped at me that if theyd been trying to find a medical diagnosis for that long it must just be in my mind, and before i even said the C word, she flippantly commented that the only thing theyve never tested me for is Celiac Disease. Ive now had the blood test and waiting for results but im convinced they wont be definitive as ive been trying to cut wheat out for the last six months tho i have been drinking a lot of beer and still eating some sandwhiches and pizza etc tho i have cut most of it out. I feel convinced i have this disease, my arms and legs seem to be thinning and at the moment i feel like im fighting to get it diagnosed.

I wanted to let off some steam as I am INCREDIBLY angry and bitter that this is being diagnosed late and could have been treated so easily.

Secondly I am very very worried. It makes sense that ive had this for 17 years at least, possibly longer and Im concerned, especially as my teeth are getting worse, that I may have Osteoperosis as well. Can anyone advise me how likley this will be? Whats going to happen next? Will i collapse? Im 5ft 9, medium build, taller than my father but 2 inches shorter than my brother. I know no one can say for sure till I have a scan but im depressed because i cant get one here until they agree its what i have and i dont know when that will be. They traditionally have treated me like I was crazy as id been in and out claiming i was tired and lethargic all the time. I feel like at the moment i am stuffing myself with something that is poisoning me just so that I can get a positive result which may take another 6 weeks if at all. It is seriously depresssing me - i cant sleep and dont feel I can work and I would really appreciate your advice.

Also, I want to let you know how lifesaving this site is. I feel like ive had a light turned on in a dark room as for years no one - my friends, family, workmates or doctors - have taken me seriously. So, thanks. :-)

Sorry that was meant to be London, not the London.

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Rachel--24 Collaborator
Rachel--24
Posted

Well...I hope you get your answers but even if the tests are negative you should still go on the diet 100% (no pizza, no beer). It sounds like you could have Celiac but the tests arent "perfect"....your bodies response to the diet will make it official if the tests do not.

Also, if you have Celiac alot of the damage that may have occurred will correct itself once you're on the diet...although I'm not sure about tooth enamel. Someone else may be able to answer that question for you. You definately arent "permanantly" damaged though...the body is very good at repairing itself. :)

marfa62 Newbie
marfa62
Posted
Hey guys. My names Matt and Im based in the London. Im a 32 year old guy and Im convinced I have got Celiac Disease. Ive been going to the doctors since I was 17 complaing of various symptoms and have been brushed off and misdiagnosed for years:-

When I was 15 and suffering from Chronic Fatigue the doctors decided I had glandular fever despite having a negative test. At 17 they told me I was Asthmatic depsite not testing me when I went in with shortness of breath. Ive always been incredibly pale, can remember my friends noticing I was always massively tired even when I was 17. Ive had bad hayfever for 15 years which no drugs help, have been bloated like a pregnant goat for 15 years constantly. Two years ago I had a rash on my knee which they said was fungal and would go in 5 days which only went after 18 months on its own. And now the thing that I noticed on a Celiac Website which has convinced me I have this disease is that the enamel on my teeth has become very thin and has come off in a couple of places. Am I going mad or does it sound like i 99% likely have this disease. Ive also had fluctuating diarohea and constipation for years and get incredibly irritable at the drop of a hat.

I went to the doctor on friday and she snapped at me that if theyd been trying to find a medical diagnosis for that long it must just be in my mind, and before i even said the C word, she flippantly commented that the only thing theyve never tested me for is Celiac Disease. Ive now had the blood test and waiting for results but im convinced they wont be definitive as ive been trying to cut wheat out for the last six months tho i have been drinking a lot of beer and still eating some sandwhiches and pizza etc tho i have cut most of it out. I feel convinced i have this disease, my arms and legs seem to be thinning and at the moment i feel like im fighting to get it diagnosed.

I wanted to let off some steam as I am INCREDIBLY angry and bitter that this is being diagnosed late and could have been treated so easily.

Secondly I am very very worried. It makes sense that ive had this for 17 years at least, possibly longer and Im concerned, especially as my teeth are getting worse, that I may have Osteoperosis as well. Can anyone advise me how likley this will be? Whats going to happen next? Will i collapse? Im 5ft 9, medium build, taller than my father but 2 inches shorter than my brother. I know no one can say for sure till I have a scan but im depressed because i cant get one here until they agree its what i have and i dont know when that will be. They traditionally have treated me like I was crazy as id been in and out claiming i was tired and lethargic all the time. I feel like at the moment i am stuffing myself with something that is poisoning me just so that I can get a positive result which may take another 6 weeks if at all. It is seriously depresssing me - i cant sleep and dont feel I can work and I would really appreciate your advice.

Also, I want to let you know how lifesaving this site is. I feel like ive had a light turned on in a dark room as for years no one - my friends, family, workmates or doctors - have taken me seriously. So, thanks. :-)

Sorry that was meant to be London, not the London.

MattUK Newbie
MattUK
Posted
  • Author

Thanks! Forgot to add ive always had massive dark circles under my eyes which are always worse when i feel chroncially fatigues which is often. Ive just had an allergy check for Dust mites which is the last thing they thought i might have and it was negative.

marfa62 Newbie
marfa62
Posted

Need Advice, the enamel thing can be corrected. Dentists have prescription flouride that your brush with for a period of time.

But the bigger problem is getting off the pizza and beer. and getting a diet you can live with. I am living without a confirmed diagnosis, but not eating gluten is making me feel much better. Try it and see how you feel. The doc's and lab tech's don't live in your GI tract.

Jnkmnky Collaborator
Jnkmnky
Posted

I came up negative but had serious health issues resolved by going gluten free. You don't need a test or permission to go gluten free. You could begin the diet now that you've had the blood work done. Since you've had symptoms for such a long time, you may not feel great right away. You should be prepared to give the diet at least 6 months to do you some good. Who knows though, you may feel fantastic right away.

The only problem with neg testing results is the lack of commitment you may feel towards the diet. For me, I was determined to be gluten free, but went to gluten light within four months because I ... wanted gluten foods... Well, I was promptly punished by my body and went gluten free right away a second time. Then I cheated again. Then my body revolted one night around 2 am and when the writhing, sweating, and crying ended, I swore I'd never cheat again. It worked. I'm a devout Celiac with no official dx now. :D

CMCM Rising Star
CMCM
Posted
Need Advice, the enamel thing can be corrected. Dentists have prescription flouride that your brush with for a period of time.

But the bigger problem is getting off the pizza and beer. and getting a diet you can live with. I am living without a confirmed diagnosis, but not eating gluten is making me feel much better. Try it and see how you feel. The doc's and lab tech's don't live in your GI tract.

Read all you can and then do the diet absolutely seriously. You might also keep an eye out for other possible sensitivities....like casein (dairy protein). I found I had to give up both gluten AND all dairy. If you can stick to the diet properly for a good amount of time, then a small cheat with gluten and/or dairy will definitely show you a strong reaction. I only needed a few of these "cheats" to decided it wasn't worth it and that I would forever more be gluten and dairy free. I don't even have to debate about it any more. If you give it enough time, you'll probably feel better than you ever knew you could feel and then you won't want to go back to the old way of eating.

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plantime Contributor
plantime
Posted

The diet itself is the best test. Try it for 3-6 months, if you get better, stick with it. You don't need a doctor to do that for you. Ask us questions, let us know how you are doing!

DonnaD Apprentice
DonnaD
Posted

Hi Matt

My story is similar to your except i'm 42! If you have private health insurance I can give you the name of a lovely gastro consultant in London I think he may also have an NHS clinic if your GP would refer you. PM me if you need the details. I found him through a uk coeliac branch, my friend us currently undergoing testing with him and I plan to consult him too. I did the enterolab tests becuase my GP thought It was all in my head too! I really needed the bit of paper to confirm what I knew all ready.

Donna

  • 2 months later...
DeeTee33 Newbie
DeeTee33
Posted
I went to the doctor on friday and she snapped at me that if theyd been trying to find a medical diagnosis for that long it must just be in my mind, and before i even said the C word, she flippantly commented that the only thing theyve never tested me for is Celiac Disease. Ive now had the blood test and waiting for results but im convinced they wont be definitive as ive been trying to cut wheat out for the last six months tho i have been drinking a lot of beer and still eating some sandwhiches and pizza etc tho i have cut most of it out. I feel convinced i have this disease, my arms and legs seem to be thinning and at the moment i feel like im fighting to get it diagnosed.

You are not alone having a doctor ignore your concerns. I was always Anemic as a child. Had a Duodenal Ulcer at age 19 in 1976. I was diagnosed with Ulcerative Colitis in 89 and it wouldn't get better with medicine. I watched everything I ate and started to notice when I ate Pasta or lots of bread etc. it was worse. Food would go right through me. I mean right through me. I read an article about Celiac Disease and started my research from there. I asked my Gastroenterologist many times to test me for Celiac and he would tell me, "Oh honey you don't have that you have Colits." I would beg him to just test me. He refused everytime. He is actually a big time Dr. in the suburbs of Chicago.

Make a long story short, I went on the diet and started to digest food in less than 2 weeks. It was amazing. Took a while but found a new doctor who gave me the blood test but it came back inconclusive since by that time I was gluten free for around 3 months. He said I could start eating gluten again for 4 months and retest me. Crazy i'm not. Don't mess with success. I'm still gluten-free 2 1/2 years later, went off Colitis medicine in less than 2 months after going gluten-free. Can't ever remember feeling better.

CarlaB Enthusiast
CarlaB
Posted

I've been considered by my own family (not my husband and kids), a hypochondriac with a very low threshold of pain since I was a little kid. Finally, at 42 I got a diagnosis. You can't do anything about the past, and if you remain bitter about it, you will only ruin your future!! So, embrace the lifestyle, completely, not a little here and there and be happy that you didn't go even more years than you did.

As for the teeth. I don't think you can rebuild enamel, but I don't know. There is another thread on this site about a man who got all his teeth capped and they looked great. The only thing is it's very expensive. I'd talk to your dentist about your options, he'll know what you can do.

Carla

PS My blood test and biopsy were negative. My Enterolab tests were positive.

Ursa Major Collaborator
Ursa Major
Posted

Hi Matt, I agree that you likely have celiac disease. And unfortunately, you may have osteoporosis already as well. To find out, you need to get a bone density scan performed. You should also have your ferretin (iron) levels tested, as you may be anemic (which could cause you to be so fatigued), as well as your levels of calcium, magnesium, potassium, vitamin K and D. All those can be severely depleted by celiac disease.

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