Rituximab causing gluten intolerance?: Hi there... - LUPUS UK

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Rituximab causing gluten intolerance?

weathervane profile image
25 Replies

Hi there , just a query! I get the second half of rituximab infusion tomorrow and ive found that bread is have an instant effect , that is bloating and slight nausea . I have not experienced this before, i have been tested for this in the past because of anemia and was negative. Has anyone else found this after rituximab treatment??

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weathervane profile image
weathervane
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PMRpro profile image
PMRpro

I have a friend who has recently realised that the bloating and unwellness she has been suffering for some months correlates with having eaten wheat! She too had an autoimmune disorder which is currently in remission - and a lot of people have problems with wheat when they have one (including me). Some doctors in the USA recommend avoiding wheat.

So it could be either this is the first time you have noticed it - or the rituximab has upset your immune system enough to make you react to wheat.

weathervane profile image
weathervane in reply to PMRpro

Thank you for replying 😀 I haven't noticed this before, my husband is always complaining about and has cut out bread so i may have to go the same way 😩. I think the rituximab may have caused this , i had nausea with the first round in April but not the bloating with bread . I love a sandwich at lunch , do you think a wrap would be a suitable substitute?

PMRpro profile image
PMRpro in reply to weathervane

They will probably be wheat too - you will have to learn to read the labels!!!!

If you look in the Freefrom section you may find non-wheat wraps. We got some from Tesco in the summer when my granddaughter wanted to make pizza, the pizza bases were big packs and there was only me! We used one of the wraps to make a pizza and I used the others as wraps on other days. I've just checked online and I'm pretty sure they were sweet potato wraps - free from everything by the looks of things! They were nice.

Gluten-free bread is fairly disgusting - OK as toast but not really particularly exciting as sandwiches. The crumpets are not bad though - I was in the UK the other day and brought a pack back with me, I had one toasted with a fried egg on top for lunch, it wasn't bad at all. I remember muffins were good - but didn't see any this week, maybe they don't do them now.

I can eat non-wheat grains - pure rye bread, spelt and kamut. The last two are ancient wheat varieties and are fine for me, no problems. So it would be worth trying if you can find any - but be careful it is pure, a lot of bakers use some wheat to get it to rise.

weathervane profile image
weathervane in reply to PMRpro

Ive tried sainsburys gluten free wrap and they were not good so i will check out tescos. I will find it difficult ! I will have to get into making my own soup again as lunch time is difficult to sort ( for me 🙁) thank you

PMRpro profile image
PMRpro in reply to weathervane

I don't think these were "gluten-free" - except they are naturally so. Most manufactured gluten-free things aren't good cold - toasting helps a lot!

in reply to weathervane

We often eat gluten free bread made in a bread maker. It's very good for my roughage intake but my hubby finds he bloats with bread more than I do. Our homemade gluten free bread is lovely when it's still warm and fine toasted - including toasties. Could it be that Rituximab is just heightening a pre-existing autoimmune intolerance? Perhaps, like many autoimmuners, you're gluten intolerant rather than full blown Coeliacs? I found that cutting out gluten helped my longstanding bloating and helped me with weight loss six years ago, when my RA first started. In fact I lost 3 stone in a year which was very necessary for me!

I don't have Coeliacs but I do find I'm generally better off avoiding foods containing sugars and refined foods - so if I eat food containing gluten I try and keep it to wholemeal and stick to homemade where possible. I rarely touch the Free From products personally as they are very refined and still contain a lot of sugar and preservatives and mostly are very dry and my Sjogren's swallowing issues make them impossible to digest without shed loads of water - which adds to the bloating. But my GI system is a total mess at both ends now.

Hope you find alternatives that suit and the Rituximab makes a very positive difference overall. X

weathervane profile image
weathervane in reply to

I have been avoiding this issue for a while as i love bread and strangely my husband also bloats more than me. I am going to cut down and find suitable alternatives. Im not good with too much salads either as it sets off IBS ! I would love someone to plan and cook all my meals , it would be so much easier 😟

in reply to weathervane

I know exactly what you mean. Just try to keep meals as simple as possible and maybe try stuff like Nairn's oatcakes with some good quality cheese and a good pickle. I drink a good quality hot chocolate with soya milk and wheat free oatcakes on days where I can't be bothered to cook. I make chunky soups with lentils, onion, carrots and potatoes and chicken or veg stock. It's all easy good to prepare and cook. Main meals are Hecks gluten free sausages with beans and mash, simple stews, kedgeree, omelette - only stuff that's really simple to prepare. It has to be really sloppy these days to be able to go down the hatch. It's easier in a way because I don't have so much interest in food these days due to Sjogrens destroying my taste buds and making it so hard for me to swallow. And I'm positively drowning in water and herbal tea! X

weathervane profile image
weathervane in reply to

I am find food is sticking a Bit more at times now, have to take small bits and lots of liquid . I need to get back into making hearty soups- but may need to leave it a few day as ive found exhausted for 4-5 days after treatment. I hope you managed home again safely, best wishes xx

in reply to weathervane

Yes really take it easy and let the drug take effect. Can your husbanddo the cooking or food prep for a while perhaps?X

weathervane profile image
weathervane in reply to

🤑 I think it will be simple stuff for next few days , hubby doesn't really do cooking-- he works long hours .

in reply to weathervane

I admit that mine loves cooking so I'm lucky - especially as I've lost interest in food these days. He works nights so we tend to just do our own thing until tea time. If there's a soup on the go he often comes down for some and then goes back to bed for a few hours. I admit I just bought ready prepped stir fry food for our dinner tonight so I do stray from my self imposed rules quite often! X

GloomyEeyore profile image
GloomyEeyore in reply to weathervane

Baxters lentil and bacon soup is gluten free. Most are wheat free, it's barley that's the problem if you have to avoid gluten and not just wheat. Xx

GloomyEeyore profile image
GloomyEeyore in reply to PMRpro

Asda do Schar free from pizza bases. They come in a twin pack but are individually wrapped inside. Nice too, wouldn't know they were gluten free. Never thought about making pizza using a wrap as a base. Might try doing that!

PMRpro profile image
PMRpro in reply to GloomyEeyore

Schar is based near us - but finding their products here isn't easy!

GloomyEeyore profile image
GloomyEeyore in reply to PMRpro

I get mine from Asda, Tesco or Sainsbury's. Also have them in Morrisons but am not there that often as it's further away with no direct bus.

PMRpro profile image
PMRpro in reply to GloomyEeyore

Not options here in Italy! But the village pizzeria does gluten-free pizzas as compensation :-)

weathervane profile image
weathervane

Ill have to get the reading glasses out and check the labels . Hope you are keeping well 😀

PMRpro profile image
PMRpro in reply to weathervane

It gets to be habit very quickly! I'm lucky in that i just have to take my specs off and hold the stuff close enough to see it. And I can read the really realy small print!

Oh yes - doing fine :-) thank you

Wenwen profile image
Wenwen

I'm going to have 2nd Rituximab today. Have not noticed the direct effect of it on bloating. I'm having a few medications and have mild diarrhea for a while.

It is interesting to know that rituximab could cause bloating

weathervane profile image
weathervane

Im waiting to get hooked up to rituximab drip now so i will ask about this to see if can be an issue will up date if find out anything x

weathervane profile image
weathervane

Well the doctor says there is no connection between rituximab and gluten intolerance! Will see how i get on after this dose . I have IBS as well so maybe connected to that and rituximab upsetting things . I will reduce my gluten intake though as will help matters 🙂

Maureenpearl profile image
Maureenpearl

I've had Rituximab several times now the last in November and I was given a sandwich each time I had the infusion. I have never experienced nausea or vomiting.

Hope the next infusion goes well for you.

💐🙏🏽

weathervane profile image
weathervane

Thanks maureen , im feeling ok st the moment just v tired . I will. Keep track on what i eat and see if it agrees with me x

GloomyEeyore profile image
GloomyEeyore

I'm on a gluten free diet because of coeliac disease. This means totally cutting out not only wheat but barley, malt and rye too. The bread isn't the best. The one exception is Newburn gluten free bread. It is really nice. Wouldn't know it is gluten free. M&S do a range of free from sandwiches which are nice. There are a lot of new free from products on the market now from bread and rolls to fish fingers and pizza to cake and biscuits.

If you do have to avoid wheat then there are a lot of options out there. Yes it involves a lot of label reading but many foods are naturally wheat free. Not so many gluten free though 😢

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