Onion and garlic. Starting to feel sane! - LUPUS UK

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Onion and garlic. Starting to feel sane!

RosieA profile image
15 Replies

I started to read a thread on this forum about food intolerance and have since looked at the Johns Hopkins site which mentions garlic as being a potential food to avoid.

About 4-5 years ago I found that even the smallest amount of garlic or onion would make me feel sick within minutes and then my whole abdomen would expand to make me look at least 8 months pregnant, I would feel truely quite dreadful. I would remain swollen for a few days at its worst. This reaction was mainly dismissed as bad luck by the medics until someone mentioned FODMAPs (to be honest that is the only way I discovered what food I was struggling with).

I have avoided both foods in any form since. It was so reassuring to read on the JH site that this was a problem and not psychosomatic as a medic so kindly said.

Has anyone else suffered this problem? Not that I wish it on anyone but it would would be so wonderful to know that I am indeed not neurotic. Kindest thoughts.

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RosieA profile image
RosieA
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15 Replies
happytulip profile image
happytulip

I have to stick to a low FODMAP diet after a 10 day hospital admission last year.

It's helped dramatically. I thought I was helping myself by eating lots of broccoli and cauliflower etc but now I realise I was doing the wrong thing.

I still bloat a bit at times but nothing in comparison to how I was.

RosieA profile image
RosieA in reply to happytulip

Gosh poor you. Yes I have to be careful with brocoli and if I indulge with cauliflower I can only do so for one meal and then not revisit for a while. The FODMAP was an excellent tool and certainly tranformed my life. At it's worst I was tested for bowel and ovarian cancer so I can't imagine how dreadful it must have been for you. So glad you are doing better now. I have learned to look very carefully at all processed foods. Even mayonaise can have 'natural flavouring in it. Many thanks.

MrsMouseSJ profile image
MrsMouseSJ

Yes, I can't touch either onion or garlic now. Approaching things from a FODMAPs perspective, I can't tolerate any GOS or Fructans now; not even the tiniest amount. In terms of onions and garlic, I loved these and added them generously to my cooking/salads. Everything changed really quickly, which shocked me.

I also can't tolerate disaccharides any more - this was the first intolerance. And can only eat occasional, low doses of fructose.

So you are not alone - far from it, if you look at any online forums for those with IBS. And you are not neurotic! FODMAPs/intolerance is a well established science and whichever medic told you that you are neurotic has not been keeping up with their learning!

RosieA profile image
RosieA in reply to MrsMouseSJ

It is so interesting isn't it. Even though it might drive us barmy. Sometimes my stomach goes ballistic and I have no idea what I have eaten. Elastic is now by BFF, I would not dream of going anywhere to eat with a fixed waist band.

May I ask if your AI disease came after this. Mine seems to have developed 2-3 years after I became intolerant to the allium family.

So many thanks for your response. Strange though. I was chatting so happily to my NRAS friends and now have found a new set. Let's hope it ends with that. Kindest thoughts.

MrsMouseSJ profile image
MrsMouseSJ in reply to RosieA

Hi RosieA and sorry for delay in replying. No, I was diagnosed before my allium intolerance - and I think my autoimmune issues were around for many years before actually being diagnosed. But I do wonder if it is all part and parcel. But not able to get any real gastro help though - the doctors basically just shrug and say that I am absorbing my food ok.

And, yes, to elastic! I find my bloating is worse later in the evening and, if I take my clothes off and stand in front of a mirror (scary these days!), it is quite noticeable.

All good wishes to you.

RosieA profile image
RosieA in reply to MrsMouseSJ

Ah yes, I know that shrug, But now I can point then to the Johns Hopkins site. It makes sense that with an AI problem the last thing you need to do is something to boost it more!

The bloating is such a pain in the neck - I dread going out sometimes for a meal - feel fine then suddenly puff - 8 months pregnant -miraculous. All the best back. x

Cann profile image
Cann

I can take a spring onion now and again, but that is about it - a pity when garlic and onions are good infection fighters.

RosieA profile image
RosieA in reply to Cann

Indeed. I can't tolerate it within 'natural flavorings' which is in so many foods. I have learned to live without, fennel seeds are now my culinary stand by.

Cann profile image
Cann in reply to RosieA

I have to be careful with all seeds, but take them as butters and halva sometimes. I use ground fennel that I find best for me - how different we all are!

AimeeA profile image
AimeeA

One other interesting thing is that lupus patients in particular can be extremely sensitive and/or allergic to sulfur/sulfa products. Onions and garlic have a lot of sulfur in them.

High amounts of sulfur are in a lot of things, especially onions, garlic, wine. I can't tolerate wine at all, but can have limited amounts of onion and garlic as long as they're well cooked. I don't have trouble with meats, but have trouble with nuts.

So it's very individual how you respond to particular foods and an elimination diet can help figure that out.

Here's an interesting article about onion/garlic intolerance in Popular Science:

popsci.com/animal-vegetable...

RosieA profile image
RosieA in reply to AimeeA

Thank you, have read the article, it's lovely to know your not alone - although you wouldn't wish it on anyone. I can not tolerate any allium in any form. At one point it got so bad that I accidently had half a teaspoon of peas cooked with some onion. That was enough, meal over. Happily, I can still indulge in red wine - my one weakness!!

miccika1 profile image
miccika1

Yes, FODMAP is very useful if you have gastro issues. I have been following for many years first very strictly then idebtified which of the fodmap is bad for me. There is a breath teat you can use to identify also which of the Oligo-, Di-, Mono-saccharides And Polyols is causing you issues. But looks like you already discovered its Fructans (onions are Fructans)

RosieA profile image
RosieA

FODMAP was certainly invaluable. Luckily the allium family is the main culprit with me. It was also interesting to read the concern about garlic mentioned on the Johns Hopkins site - such a reliable source of information. Many thanks for your response.

DJK99 profile image
DJK99

Hey RosieA - yes absolutely, I emphathise. I read few years back to avoid garlic and alfalfa sprouts at all costs and so glad I did! I love garlic and used to eat a lot of it once a week when I’d have a roast - loved the squidgy garlic. But the next day I felt DREADFUL. Poisoned almost, utterly exhausted. And the same with cured spicy sausage... dreadful. I stopped both and hey presto didn’t get that extreme feeling. Also used to eat alfalfa sprouts with humous for lunch when I was still working and I had dreadful lesions on my inflamed fingers and their joints. I stopped eating that too and had a marked improvement. I have had gastric issues for decades but has become really bad in last year so, further to GP and now full on gastro consultant phone consult, I’m about to start the FODMAP diet, on his recommendation... plus a poly biotic called VSL3 - highest amount of live bacteria strains compared to even Symprove. Lots can’t have on FODMAP, but tons I can - I’ll try anything as in bad state from tum to er the other area that rhymes! So glad you my made the connection... think it’s important to write about it on here as the effect garlic has (for me anyway and obviously you) on lupees can be quite severe. All the best ! Dx

RosieA profile image
RosieA in reply to DJK99

Your very welcome! If you have a second I found the John Hopkin's reference quite good. The FODMAP took some working with but it saved my bacon (if I ate any). Trickier when your a veggie I think. Good luck with it all. I must admit I was so relieved to read of the connection and once I had it made complete sense. x

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