frustrated and confused
Moderator: talkhealth
frustrated and confused
I gave up eating wheat and gluten 2 years ago. This was a doctors advice as I had been suffering from what I have been diagnosed as IBS by a different doctor. I had initially thought that malt had been causing most of my symptoms but when I took wheat and gluten away I stopped being ill completely. It took me over a year to visit the doctor to have tests for coeliac but was told that as I am overweight there was no way I could be suffering so tests would be pointless. Initially I was embarrassed by the comment, then upset, then annoyed. As this isnt about the doctor I need advise on what I should do? Do I keep wheat and gluten free or do I eat it again. Do I do this gradually as it may be an intolerance? I'm so unsure as I don't want to be ill again. Previous to my diet change I was being sick, had stomach cramps, diarrhoea and was aneamic(a long term problem, more since my early teens). I really don't fancy that life again but my diet is quite expensive and although I'm willing to pay for foods that don't make me ill, if I don't need to I would rather not.
Thanks in advance.
Thanks in advance.
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KikiTargaryen
- Posts: 3
- Joined: Thu Apr 10, 2014 7:14 pm
Re: frustrated and confused
I posted a big ramble in one of the other forums on here about coeliac disease, but the points I would make to you is that:
1. Doctors (sorry doctors), in general, know nothing about Coeliac disease. In the UK, Coeliac UK (www.coeliac.org.uk) is the best place to get info about it. For an example, see the doctor you spoke about.
2. The tests for Coeliac disease will come back negative if you have not been eating gluten regularly for about six weeks before the test (i.e. two substantial portions per day).
3. Sometimes the tests don't work. This has been happily admitted by three different doctors that I've seen. If not eating gluten makes you feel better, but the tests still come back negative, then all you're missing out on is some free food on prescription.
1. Doctors (sorry doctors), in general, know nothing about Coeliac disease. In the UK, Coeliac UK (www.coeliac.org.uk) is the best place to get info about it. For an example, see the doctor you spoke about.
2. The tests for Coeliac disease will come back negative if you have not been eating gluten regularly for about six weeks before the test (i.e. two substantial portions per day).
3. Sometimes the tests don't work. This has been happily admitted by three different doctors that I've seen. If not eating gluten makes you feel better, but the tests still come back negative, then all you're missing out on is some free food on prescription.
Re: frustrated and confused
Hi KikiTargaryen,
Thanks for your reply.
I am guessing that you have had negative experiences too.
I have been in contact with Coeliac UK and found them to be very helpful and supportive. Sadly the doctor I referred to in my last post has put me off approaching any others to look into this further. But as I said I wasnt here to rant about that.
I really would like advise on what to do next. Perhaps someone out there has been in my shoes and could help me out.
As for your comment about prescription food, that was misinterpreted. I'm not trying to get freebies, I just don't want to be wasting my money on unnecessary food, but the thought of being ill again is unpleasant.
Advice and experience from people who have been there can often make that leap a little less scary.
Thanks!
Thanks for your reply.
I am guessing that you have had negative experiences too.
I have been in contact with Coeliac UK and found them to be very helpful and supportive. Sadly the doctor I referred to in my last post has put me off approaching any others to look into this further. But as I said I wasnt here to rant about that.
I really would like advise on what to do next. Perhaps someone out there has been in my shoes and could help me out.
As for your comment about prescription food, that was misinterpreted. I'm not trying to get freebies, I just don't want to be wasting my money on unnecessary food, but the thought of being ill again is unpleasant.
Advice and experience from people who have been there can often make that leap a little less scary.
Thanks!
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Dr Helen Brough
- Posts: 52
- Joined: Wed Feb 16, 2011 3:36 pm
Re: frustrated and confused
Dear Mizmaz72,
Wheat and gluten 'intolerances' are quite a minefield so I wanted to just outline a few possible reasons for symptoms with wheat and gluten, possible diagnoses and tests.
1) Coeliac disease is an autoimmune condition which is significantly underestimated (approximately 1 in 100 people are affected in Ireland). Coeliac disease can be present in people who are underweight, normal weight or overweight. If somebody has coeliac disease it is important that they are correctly diagnosed and kept on a strict gluten free diet in order to avoid gastrointestinal problems later on. This is why, in somebody with a clear history of gastrointestinal symptoms which improve after gluten exclusion I would recommend a coeliac screen (immunoglobulin A (IgA) anti-tissue transglutaminase antibodies (TTG)) which must be done after eating daily portions of gluten for 6 weeks. Another important test to do at the same time is Immunoglobulin A as if total IgA levels are reduced then this could lead to a false negative coeliac screen. That said the TTG test is a reasonably accurate test, although if there is a negative test and a strong clinical suspicion then an endoscopy can be performed and biopsies taken from the small intestine by a Gastroenterologist.
2) Irritable bowel syndrome is very common. In adults with IBS, wheat exclusion has been shown to improve IBS symptoms of bloating, abdominal pain or loose stools in some individuals. This does not mean that the person with IBS has coeliac disease although this should be tested for.
3) In children wheat is a food known to be implicated in delayed gastrointestinal food allergy; which can affect the upper gut (bad reflux and pain), mid-gut (pain, loose stools) and lower gut (loose stools, constipation, pain). Although wheat is not as commonly implicated in delayed gastrointestinal food allergy as other foods (such as cow's milk) it is still something to be born in mind.
The symptoms that you describe: being sick, stomach cramps, diarrhoea and anaemia could be due to coeliac disease and I would recommend that you go back to your doctor and ask to be tested (with the understanding that you will have to go back onto wheat to do this for 6 weeks).
Finally, I would agree that Coeliac UK are a great organisation and give very good advice.
I hope this helps.
Dr Helen Brough
Consultant in Paediatric Allergy
Wheat and gluten 'intolerances' are quite a minefield so I wanted to just outline a few possible reasons for symptoms with wheat and gluten, possible diagnoses and tests.
1) Coeliac disease is an autoimmune condition which is significantly underestimated (approximately 1 in 100 people are affected in Ireland). Coeliac disease can be present in people who are underweight, normal weight or overweight. If somebody has coeliac disease it is important that they are correctly diagnosed and kept on a strict gluten free diet in order to avoid gastrointestinal problems later on. This is why, in somebody with a clear history of gastrointestinal symptoms which improve after gluten exclusion I would recommend a coeliac screen (immunoglobulin A (IgA) anti-tissue transglutaminase antibodies (TTG)) which must be done after eating daily portions of gluten for 6 weeks. Another important test to do at the same time is Immunoglobulin A as if total IgA levels are reduced then this could lead to a false negative coeliac screen. That said the TTG test is a reasonably accurate test, although if there is a negative test and a strong clinical suspicion then an endoscopy can be performed and biopsies taken from the small intestine by a Gastroenterologist.
2) Irritable bowel syndrome is very common. In adults with IBS, wheat exclusion has been shown to improve IBS symptoms of bloating, abdominal pain or loose stools in some individuals. This does not mean that the person with IBS has coeliac disease although this should be tested for.
3) In children wheat is a food known to be implicated in delayed gastrointestinal food allergy; which can affect the upper gut (bad reflux and pain), mid-gut (pain, loose stools) and lower gut (loose stools, constipation, pain). Although wheat is not as commonly implicated in delayed gastrointestinal food allergy as other foods (such as cow's milk) it is still something to be born in mind.
The symptoms that you describe: being sick, stomach cramps, diarrhoea and anaemia could be due to coeliac disease and I would recommend that you go back to your doctor and ask to be tested (with the understanding that you will have to go back onto wheat to do this for 6 weeks).
Finally, I would agree that Coeliac UK are a great organisation and give very good advice.
I hope this helps.
Dr Helen Brough
Consultant in Paediatric Allergy
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