Anyone have lupus and celiac?: Just when I thought... - LUPUS UK


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Anyone have lupus and celiac?

Natura profile image

Just when I thought my sero negative lupus symptoms were under control, I am still struggling with pain, my liver drving me nuts, and dizziness and breathing problems. I had a snack of gluten free chips, and my intestines starting getting upset. Really? Why does this disease change? And why did my hepatolgist do a sono and say my liver was fine, when Everytime I eat something other than meat and veggies...i get fatty cysts on my liver and discomfort?

I guess its a waste of time looking for answers to an inherited gene dysfunction, and even drs have no understanding of celiac. Ugh!

15 Replies

Or any inflammatory disease! They just treat symptoms. Lets work on the cause for once!

If gluten-free caused a problem - where is the link to coeliac? The one thing that DOESN'T upset coeliacs is gluten-free food.

Natura profile image
Natura in reply to PMRpro

Thats what I thought. But, there must have been some other ingredient that bothered me. I suspect and have read that natural flavors is questionable in any product. Food companies i guess, dont have to explain natural flavors. I threw the bag out, i should have saved and researched.

I have not been diagnosed with celiac, but have a good majority of the symptoms

I eat a mostly gluten free diet as it helps my lupus but once had a terrible reaction to a bag of gluten free chips or crisps or whatever we call them. I came to the conclusion that it was something in the flavouring or a preservative in the food that kicked it off. I'm pretty sure it was the flavouring, they were tortilla chips. Had to throw tha bag away. Never again!

Natura profile image
Natura in reply to happytulip

Thats what happened to me. They put some flavoring in them to make them taste like doritos. Everything calmed down when I stayed clean for a couple of days. Like only veggies and meat. I seem to have to stay very clean...take care everyone...

I am positive lupus and coeliac. For years I was told it was IBS. However, I did not change my diet until I had a positive test for coeliac. I only stopped foods that I knew did react badly, either giving me the runs or gut pain or an allergic reaction. Now I am positive I have stopped foods but not replaced them with look alikes.It has so far worked well.

Natura profile image
Natura in reply to johare you eat only whole foods? No processed foods, like gluten free crackers? Thank you for sharing

johare profile image
johare in reply to Natura

Yep I tried gluten free and found they didn't work for me. I don't use ant additives now unless I cant avoid them like nights out. But I'm still finding things that are not problems alone but are in combination with something else.

yeap I have coeliac disease . Had it diagnosed by biopsy 12yrs ago. This is a good site here in New Zealand .Hope this helps

Natura profile image
Natura in reply to pammy1

Thank you pammy1

I have both SLE and lupus but have never had a problem with gluten free food. It has really helped and I am doing really well in respect of coeliac. My illnesses are separate and I never think about the coeliac as it is stable and controlled via the gluten free diet. One less thing to think about! The SLE is stable at present so I am grateful. Hope this is of some help to you.

Renu x

Natura profile image
Natura in reply to Renu

Thank you Renu....some think it was an added ingredient that upset me. Probably. Back to no processed foods. No cheating with crackers. Lol.

I meant SLE and coeliac lol!!!

Renu xx

I have Lupus and Celiac. I am not able to eat Gluten - have not for years, so the biopsy came back ok, but the blood work did not. I eat a Paleo diet. We rarely eat out, because it is too risky. If I am going to cheat, it better be on my terms and be delicious, because I will pay. My advice is not to eat anything that is "GF" stay with the Organic meat and vegetables. No sugar, Dairy, limit alcohol. It is not fun, but the alternative is not either.

When I do eat out, it is Indian, Mexican, or Thai food. I also can not tolerate potatoes, Corn, and Zanthum Gum, which is in most GF foods. If you look up Sibo (Small intestine bacteria Overgrowth) and Leaky gut Syndrome - ( I have both but have made great headway with them eating this way) you may feel better. Keep a food journal for a month and chart your moods as well. Good luck! J

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