Hi to everybody who answered me last time I wrote on here. Well I have been on the wheat free diet now for three weeks and can say it works. The bloating has gone I have started to loose weight 5/6lbs so far. I digested foods a lot better now. I will say that wheat free isn't cheap to buy, so I make my own bread which I have always done Ive got to love rice cakes. The pain I was getting has gone although have had a little twinge, but nothing like I did have. I feel brighter and have a little more energy, the fatigue and tirdness is still there but I seem to handle it better....perhaps that sounds crazy. I did say that I had something on my liver but couldn't remember what it was called it is a Hemangioma...if that is difficult to say I'll break it down...He-man-gee-o-mah. My consultant has told me its nothing to worry about and that it is begnin. Well girls and guys hope this has helped any of you out there. Keep smiling xx
Bloating wheat free diet: Hi to everybody who... - PBC Foundation
Bloating wheat free diet
That is fantastic news..so glad you are feeling better. Have been thinking about the wheat free diet myself.
yes the tiredness is the worst by 3pm I could do with a power surge lol !!!
Take care and keep going well.
That sounds very positive and well done, I realise cutting out wheat can be very difficult and as you say expensive. I have been thinking about cutting out wheat for a while now. I know that it is well accepted by the health professionals too that many PBCers benefit from a wheat free diet. I'm going to give it a go. Thanks for your feedback Jude 
xx
Hello Jude1.
Good to read that you are feeling pretty great at present. You didn't say how long you have been diagnosed with PBC and on urso.
In early 2011 my son had a colonoscopy at aged 23. Was informed to steer clear of wheat for awhile as nothing was found, bloods all ok and it was put down to being 'temporary' due to over-use of antibiotics for a skin condition. So I started buying gluten-free flour (it is a mixed one with potato, rice, maize and some other gluten-free cereal) and experimenting with that. It hasn't actualy bothered my family having fruit crumbles, odd pie I make (usually cheese and onion with a crumbly cheese) with this flour. I also buy gluten-free pasta which again no-one really notices the difference. Bread's another matter as the gluten-free 'stuff' isn't that good, very dry and drops to bits for sandwiches. (No intentions of making bread, it would just get wasted as we don't go through a lot of standard breads in a week and now times are getting so tight with constant rising fuel bills and food, we tend to use bread not deemed for sandwiches to be used to toast.)
There are some good gluten-free cereals for breakfast out there that actually are cheaper I have found than the standard ones. At the moment we are on a bag of brown puffed rice (though I make porridge and also buy muesli still).
I know if you switch to a higher fibre diet and you haven't got PBC for eg., you can feel bloated for awhile as your digestive system starts getting used to a higher fibre intake. I've always been used to a good fibrous diet myself but have to say that despite never suffering from bloating pre-PBC diagnosis (Dec 2010) when I first started on the urso I did get this for a few months and then it just vanished. Despite still partaking of a good diet with plenty of fibre I have bouts of constipation, something I never did pre-urso and I know that is to blame.
I do think gluten-free is pretty good but also can be costly and it's worth noting that things like cornflakes for instance that are deemed gluten-free, if you buy standard, they are not guaranteed as such because the factory that produces them does also manufacture gluten products. That's where it is probably that bit harder for a coeliac.
My fatigue vanished for me within a year of starting urso tho' the itch is still with me at night. I find I do also start to feel tired and yawn constantly around 3p.m. every day regardless of what I have done, little or a lot. I know mine is due to the fact that if I do not have a good night, it rolls over as sometimes if I've managed a few nights where I've had uninterrupted sleep I find I don't feel tired until around 6p.m. I know for me without the itch I woldn't know I had PBC.
That's brill news...I have Been toying with the idea for a while.as bloating has Been a problem for about 6 mths .I have never had a problem before..I try to avoid normal bread and things like pizza and biscuits and cakes I know if I have them ill be up like a balloon in no time.but so stones anything can bloat me...really pleased it has helped u
Thats good your feeling better. This may be a stupid question but is wheat free and gluten free the same?
Yes wheat and barley and some oats (depending where they are grown) have gluten. Gluten is what gives dough its elasticity or stretch. I have a daughter who is gluten free so have had to learn what is OK and what is not. She is married now with kiddies of her own and bakes almost everything they eat. There is good commercial gluten free bread available here in NZ so she will buy some and keep it in the freezer because it is not particularly suitable for sandwiches as it crumbles but makes lovely cheese toasties and other toasted snacks.
Marie makes her own mix of gluten free flour with rice flour, potato flour and various other flours. She has several good recipe books and looks on line for hints and tips and recipes. There are other vegetable type extracts which she adds to her flour mix to give some elasticity to her dough.
I lived in England a long time ago so don't know what sort of shops you have these days for buying unusual ingredients. I doubt that Tesco or Waitrose would have much but you never know. Trouble is that those sorts of shops have very commercial products so the price is high. Marie goes to ethnic type shops who sell the sorts of things used in Indian and other Asian cuisines and a lot of those products are gluten free. They are usually sold in bulk too (here they are anyway) or in plain packaging so the extra costs are cut out.
Gluten free pancakes and pikelets are what she makes and puts in the girls' lunchboxes. A lot of commercially prepared foods such as gravies and sauces not only have gluten in them for thickening but also have other additives which don't do us any good either.
When they come here for family times I have to be very careful what I make but even though she has been married 15 years now I can still figure out what to use most of the time. We didn't know what was wrong with her when she was little so I had years of tearing my hair out to try to keep her well, it is so much easier now that we know.
Good luck with learning a new way of eating, it will pay off in the end and as somebody said in another post unless people KNOW it's GF they don't notice.
Thanks for the reply. I eat a high fibre diet so eat breakfast cereals like Weetabix and Porridge quite a bit but despite this have had constipation lot more recently and was wondering if it would be gluten that would be causing this. Think will ask to be referred to dietician at my next apt see what they think.
Littlemo. You mentioned you eat porridge, have you tried buying some oat bran and adding that to the porridge for additional fibre. I alternate, add some days, don't bother others. I find I have been constipated at times since starting on urso Dec 2010. Never was prior to PBC diagnosis.
I never suffered bloating except for a few days prior to the monthly cycle but I did suffer bloating for a few months after starting on urso.
I am not particularly a fan of the branded Weetabix, buy an equivalent but I tend to find Malted Shreddies (not the sugar-coated version) are much better to eat.
I also buy instant porridge as well as standard oats and throw in some cocoa powder (supposed to contain iron) and also a bit of oat bran.
Hi Peridot no haven't tried that but will do thanks.
Yes you are quite right commercially prepared foods do tend to contain wheat flour for thickening. I tend to look at ingredients. I use the gluten-free SR flour for thickening as well as pancakes and fruit crumble topping but I also buy cornflour to use too. I don't tend to buy that many prepared foods, can find something more nutritious for a simple lunch (ie boiled egg and toast or some equivalent 'bread' or jacket potato and beans. I occasionally chop up a ripe banana and have that as a lunchtime sandwich).
Hello again.
You can actually buy porridge oats that are gluten-free. Seen in supermarkets and health stores. They are produced in factories that produce totally gluten-free products. No idea how they remove gluten from the oats but you can get! Bear in mind tho' that they are more expensive that standard porridge oats.
I won't dispense with the porridge oats (standard that is) as oats apparently help with cholesterol.
From the research Marie has done it would seem that in general oats are naturally gluten free but because as a plant oats are very closely related to wheat, it is well nigh impossible to grow gluten free oats where wheat grows. Pollen drifts on the wind and can contaminate an oat field nearby. Oats grown in Scotland are more likely to be GF I believe. I presume that is because wheat does better in slightly warmer climates but I am no Horticulturalist so don't quote me!!!
Gluten is more likely to cause diarrhoea than constipation in gluten intolerant bodies. If you are eating fairly high fibre Littlemo and still constipated, try increasing your plain fluids. Water is best but lightly flavoured with lemon or blackcurrant is OK too. Avoid increasing tea though, tea is known to inhibit the absorbtion of Iron from your food.
It is amazing what we learn from simply having to live with a compromised body!! I am almost 70 now so have been having to cope with different problems for many, many years so have picked up all sorts of information, but don't quote me!! I am no sort of expert.
Yes agree there, drinking plenty of fluids can aid constipation.
I switch to redbush tea with a little skimmed milk later afternoon as no caffeine and it is apparently hydrating unlike black tea. I also buy a coffee like substitute, Barley Cup and another equivalent that is based on barley, rye and chicory, make like coffee but no caffeine.
Given there are other reasons one can have abnormal or slightly abnormal LFTs is also due to coeliac sprue apparently. It's normally taken before PBC check with a blood test. I apparently followed the norm if you can call it that for the diagnosis of PBC. The NHS usually follow a pathway after abnormal LFT blood test and I know the GP exhausted them all prior to sending me to see a hospital consultant who then took the AMA (and ANA) blood test, along with the 2 symptons at the time (fatigue and itching) I got the diagnosis.
I do know that when I had a month course of iron tablets back in the year I was diagnoses (2010) if you are on iron tablets then apparently you shouldn't take them with standard black tea due to possible loss of absorption of iron.
I also found out that calcium in too high a quantity can interfere with the absorption of iron! (I'm not on any supplements of iron, Vit D, etc.)
Does figure too that diarrhoea could be a gluten-intolerance sympton tho' urso can also diarrhoea. My son started with bad diarrhoea back in 2009 and was thought he could be a coeliac. He had blood checks and ended up with a colonscopy which showed nothing. Was thought over-use of antibiotics had caused a temporary gluten-intolerance. He quit wheat for awhile as that can be the main cause. Over the last few years he has started to re-introduce a little wheat, doesn't go overboard and he has been quite fine.
Thanks for all the info friends, but I made my first wheatfree/gluten free bread today it doesn't look very attractive infact my husband said it looked like something from jurassic park....but it tastes so much better then the bought bread....feeling very pleased with myself. I do have a passion perhaps thats the wrong word a liking for rice cakes good job really. I have also been told to buy veggi food the pasta is nice. Its like anything if you dont put flavorings in herbs etc then food will be bland. Making a sauce tomorrow will let you know what it is like. Keep smiling xx
Thank you for the information. It is worth a try. Do you know or have you heard that animal protein also is hard to break down in the liver? if you have let me know please. I am concerned about this issue. I am glad you feel better. take care
Your story doesn't sound at all crazy to me.
I'm gluten intolerant and the main symptom of that is constipation. Every time I get glutened my digestion simply stops for about three days! Before I went gluten free, I was getting pain in the gall bladder area too (no stones), and that went away on the diet too. Oh and terrible fatigue, also gone.
I think constipation is quite common in people with digestive problems, but one they are less likely to take to a doctor, because it has to be much more advanced before you can categorically say it's a problem, or even notice it. I only realised quite how bad things were when I took gluten out of my diet and stopped being constipated! Diarrhea is much more noticable and easier to quantify, and I reckon is taken more seriously by doctors.
I should add that I'm not officially diagnosed with anything... l think this means it hasn't become bad enough for doctors to work it out, which I guess is a positive! I've done the gluten challenge, endoscopy etc, and while that was all normal, it took me six months to get over it afterwards... I consider myself to be non-coeliac gluten sensitive.
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