Coeliac Woes

. . .

Apologies if this has been done before..
I'm an 18 year old girl who was diagnosed with Coeliac Disease last May.
However, after starting a gluten free diet since August of last year I have found little relief from my symptoms, if not having gotten progressively worse..
Just curious if anyone else has found no relief since starting their diet?

Rushwan

Hi, sorry to hear you are still unwell after a few monthe of the g/f diet. I was diagnosed with coeliac disease 10 years ago but have felt well since starting the g/fdiet. Perhaps you should see your doc? Presume you are sticking rigidly to the diet, but even so remember there can be cross contamination issues, especially if you eat out a lot. Pm me if you think I can be of any help to you i.e. discussing the diet, possible pitfalls etc.

ephelan24

On a gluten free diet over 10 years now and found it difficult at the start as cross contamination and ignorance on my part was a constant problem. There is a tendency too to become super sensitive to gluten once you eliminate it from your diet and this could be the reason for you feeling worse. All I can advise is to stick with the diet and inform yourself as much as possible and also to educate those closest to you who will probably end up sharing your new diet as in substituting gluten free sauces etc. You will need a lot of support so don't be afraid to ask. Luckily my wife took a big interest and has become something of an expert in preparing home made gluten free food! Hopefully those around you will take a similar interest.

. . .

My mother is also a Coeliac and was diagnosed eight years ago so it has made it much easier on me with getting to terms with what I can and cannot eat..
I wouldn't eat out too much, mostly it can be a bit of a hassle so I tend to shy away from it!
I have been to my doctor so many times during this year that I have began to lost count.. I have had every test you can think of done to try to eliminate Crohn's and colitis and other diseases..
Its frustrating when all my doctor can tell me is that they think the problem may lie in a certain part of my stomach, yet they do not have the technology to access this part, and more than likely will not in my lifetime..
My mother was sick for many years before her diagnosis and found instant relief from the diet, which is why we are stumped that i have failed to see any results.. A lot of gluten free foods just appear to not agree with me!
Ironically the only relief i get from my symptoms would be in the rare times i would slip up and resort to my old diet.. Another thing my doctor cannot explain to me!
Kind of at my wits end at this stage

. . .

Also, thank you for your replies!

RentDayBlues

GF food doesn't agree with me either, I've put it down to the fact that some contain small traces, be it under the guideline level but I tend to stay away from it altogether. It took me a good year to get used to the diet and I have to say it has also taken 2 to feel "better"

ScouseMouse

My wife is Coeliac for the last year. It can be very hard to find food that will agree with you but it is out there.

Check out Coeliac.ie. They are good for information. After that, it is a learning curve about what you can and cannot have.

Wibbs

My mother is coeliac and so are other members of my family. Now of course this is a very small sample, but having grown up with this, I've noted the ones who do far better after diagnosis are those who don't try to replace their old gluten foods in their diet with the gluten free alternatives. They remove pretty much all grains from their diet and look to fruit and veg for their roughage requirements. They give up sauces(unless homemade) and all prepacked type food. Basically eat very clean unprocessed foods. Fish, meat, chicken, wide range of veg and fruit homemade soups that sorta thing.

I think this is very hard for most who are used to the pizzas and pastas and breads and biscuits and prepacked cereals in our diet, so they go the route of the gluten free alternatives. Personally I think that's a bad bet. Now I'm luckily not a coeliac, but having tasted gluten free stuff over the years I wouldn't touch 90% of it with a bargepole. Horrible chemical tasting muck to my palate anyway and I found it very hard on the guts. Because of my family history I rarely eat gluten foods anyway. Mostly so not to tempt family members at first anyway.

. . .

/Start rant!
I went to my Doc the other day and was explaining to him how during my Leaving Cert i resorted back to my old diet, so as not to experience any discomfort or symptoms during my exams as I find the most relief back on my old diet.

His response...
Doc: "So why don't you go back on your old diet then if you find it is working for you?"
Me: " :eek:. I'm sorry what? I haven't gone back to my old diet because you have told me not to!"
Doc: "Oh right yes..."

Are you serious! I mean that shocked the hell out of me!

He also informed me that another Doc in the hospital is a Coeliac and that he sticks to a normal diet until he feels poorly, then resorts back to the gluten free diet until he feels okay again, then back to the normal diet! :eek:

Resorting back to the old diet is meant to be a no-go for Coeliacs, but if a Doctor himself is going against this and doing as he likes despite the supposed risks?
Suddenly I'm beginning to think no one has a god damn clue about this disease.
/End of rant!

dudara

Wibbs wrote: »

My mother is coeliac and so are other members of my family. Now of course this is a very small sample, but having grown up with this, I've noted the ones who do far better after diagnosis are those who don't try to replace their old gluten foods in their diet with the gluten free alternatives. They remove pretty much all grains from their diet and look to fruit and veg for their roughage requirements. They give up sauces(unless homemade) and all prepacked type food. Basically eat very clean unprocessed foods. Fish, meat, chicken, wide range of veg and fruit homemade soups that sorta thing.

I think this is very hard for most who are used to the pizzas and pastas and breads and biscuits and prepacked cereals in our diet, so they go the route of the gluten free alternatives. Personally I think that's a bad bet. Now I'm luckily not a coeliac, but having tasted gluten free stuff over the years I wouldn't touch 90% of it with a bargepole. Horrible chemical tasting muck to my palate anyway and I found it very hard on the guts. Because of my family history I rarely eat gluten foods anyway. Mostly so not to tempt family members at first anyway.

Great advice here Wibbs - I have a gluten intolerance, and it's definitely better to break the habit entirely rather than 'kid' yourself with GF alternatives.

GF alternatives are generally processed foods and there is always the risk of cross-contamination etc. Switch to a naturally GF diet and see how you get on.

GF alternatives generally taste and feel like rubber anyway.

Madge

Wibbs wrote: »

They remove pretty much all grains from their diet and look to fruit and veg for their roughage requirements. They give up sauces(unless homemade) and all prepacked type food. Basically eat very clean unprocessed foods. Fish, meat, chicken, wide range of veg and fruit homemade soups that sorta thing.

Sounds like a very boring, bland, dry and unappetising and completely joyless diet to me!
I think it is IMPOSSIBLE and incorrect to suggest that coeliacs do not not need GF alternatives otherwise you will never be eating porridge or any breakfast cereals, bread, rolls, crackers, the odd biscuit, pasta, chocolate, buns or cakes, gravy, roast potatoes, sausages, yogurts, even chicken and vegetable stocks.. I could go on.. These things must be specially gluten free. Not to mention since your family cooks and bakes alot they MUST buy a lot of GF alternatives- flours, baking powders, etc.

Wibbs wrote: »

I think this is very hard for most who are used to the pizzas and pastas and breads and biscuits and prepacked cereals in our diet,

Erm, who doesn't eat those types of foods at least once a week?? Everyone has a favourite type of pizza or a fave type of biscuit or a fave breakfast cereal... Obviously you shouldn't eat pizzas or biscuits or bars every day but this stands regardless of whether you are on a GF diet or not!

Wibbs wrote: »

Now I'm luckily not a coeliac, but having tasted gluten free stuff over the years I wouldn't touch 90% of it with a bargepole. Horrible chemical tasting muck to my palate anyway and I found it very hard on the guts. Because of my family history I rarely eat gluten foods anyway. Mostly so not to tempt family members at first anyway.

Gotta disagree with you! I had 2 trufree shortbread biscuits after my dinner today and they were delicious! Some of the bread brands definitely could be improved though, aside from that I've found everything fine to be honest.
Also you obviously haven't heard of the Orgran brand which is GF, nut free, fat free, dairy free, etc In fact my dietician recomends it to ordinary patients who need to lose weight.

Madge

. . . wrote: »

I have been to my doctor so many times during this year that I have began to lost count.. I have had every test you can think of done to try to eliminate Crohn's and colitis and other diseases..
Its frustrating when all my doctor can tell me is that they think the problem may lie in a certain part of my stomach, yet they do not have the technology to access this part, and more than likely will not in my lifetime..
My mother was sick for many years before her diagnosis and found instant relief from the diet, which is why we are stumped that i have failed to see any results.. A lot of gluten free foods just appear to not agree with me!
Ironically the only relief i get from my symptoms would be in the rare times i would slip up and resort to my old diet.. Another thing my doctor cannot explain to me!
Kind of at my wits end at this stage

Sorry to hear you're going through such a hard time. I think every part of the body is affected when the digestive system gets upset.
You say you have been to a doctor (though I've found doctors to be absolutely USELESS when it comes to coeliac disease) but have you been to a dietician? If not try and make an appointment ASAP. Perhaps you are getting in gluten somewhere by accident? If it doesn't say GF on the pakaging you cannot have it!
Perhaps you might be lactose intolerant (a lot of coeliacs are) or you might just have IBS. Be thankkful it's not Crohns or Colitis!
Have you had a gastrosopy and biopsy? This is the gold standard of diagnosis.

. . .

Madge wrote: »

Sorry to hear you're going through such a hard time. I think every part of the body is affected when the digestive system gets upset.
You say you have been to a doctor (though I've found doctors to be absolutely USELESS when it comes to coeliac disease) but have you been to a dietician? If not try and make an appointment ASAP. Perhaps you are getting in gluten somewhere by accident? If it doesn't say GF on the pakaging you cannot have it!
Perhaps you might be lactose intolerant (a lot of coeliacs are) or you might just have IBS. Be thankkful it's not Crohns or Colitis!
Have you had a gastrosopy and biopsy? This is the gold standard of diagnosis.

When I started my diet I went to a dietitian, but haven't been to one since!
I'm thankfully not lactose intolerant! Ruled that out a few months ago.

I have had three endoscopies with biopsies and a colonoscopy.

I just got the results of a capsule endoscopy last week, I was told I have a rapid transit, and that everything in my bowel is exaggerated and that food travels through my stomach much quickerthan the average person.
I could have told them that

My mother is also a Coeliac and we eat pretty much the same food everyday and she rarely has any problems with what she eats, yet I am the total opposite! She has been for 8 years so we are both well up on cross contamination and are extremely careful!

I am thankful that this is not more serious than it is, as you said such as Crohns or colitis. I'm just very frustrated at this stage!
Also IBS has been mentioned, however I merely find Docs just throw that term around when they cannot find out what is wrong with you!

Madge

. . . wrote: »

My mother is also a Coeliac and we eat pretty much the same food everyday and she rarely has any problems with what she eats, yet I am the total opposite! She has been for 8 years so we are both well up on cross contamination and are extremely careful!

I am thankful that this is not more serious than it is, as you said such as Crohns or colitis. I'm just very frustrated at this stage!
Also IBS has been mentioned, however I merely find Docs just throw that term around when they cannot find out what is wrong with you!

Have you been allergy tested for other foods? Might be an idea.. My friend was having a lot of stomach problems and there was no medical cause found so she went to get allergy tested at a wellness centre and they told her she was allergic to tomatoes and vinegar and that she had an overgrowth of yeast in her stomach, so she cut out those foods and avoided yeast and has been much better.

It's true what you say about docs and IBS. I read an article my gastroenterologist wrote for the Irish Medical Journal about IBS and diagnosing it and he basically says that a patient will be diagnosed with IBS after all other digestive disorders are ruled out.

. . .

Madge wrote: »

Have you been allergy tested for other foods? Might be an idea.. My friend was having a lot of stomach problems and there was no medical cause found so she went to get allergy tested at a wellness centre and they told her she was allergic to tomatoes and vinegar and that she had an overgrowth of yeast in her stomach, so she cut out those foods and avoided yeast and has been much better.

It's true what you say about docs and IBS. I read an article my gastroenterologist wrote for the Irish Medical Journal about IBS and diagnosing it and he basically says that a patient will be diagnosed with IBS after all other digestive disorders are ruled out.

Thank you for your advice! Something I will think of looking in to!