Anyone else have issues with Gluten please? I’ve been diagnosed with an AI disease - most likely lupus. However also have stomach issues which are undiagnosed and to be honest give me more problems. I have stopped eating gluten myself as a test, and guess what - feel better! My GP bus wants me to start eating gluten again for at least 2 weeks to have a blood test for cealiacs. I’m not looking forward to that...
Anyone else have lupus and cealiacs? Or lupus and gluten intolerance?
Thank you 🙏
I think you should listen to what your body is telling you regardless of what result you may get from any test.
If you have found a foodstuff gives you problems which go away when you don't eat it, be thankful that you have stumbled on something that may take ages for others to realise.
I get reactions to certain foods even though allergy tests say there is no problem.
Not all tests are foolproof
Hi. I also have a problem with gluten containing foods - bloating, cramps and other GI issues (you know what I mean!!). I'm negative for coeliac disease and my feeling is that my issue is yeast - not gluten - as they are often found together in offending foodstuffs. Good luck finding the culprit(s).
I have yeast issues.
I have problems with wheat - but it isn't the gluten, it is the starch in the highly commercialised stuff. I know that because like quite a few of my friends who were coeliac I reacted to the gluten-free products from Juvela which were made with "washed wheat starch"! I can eat rye, spelt and kamut with no problem at all.
It depends how long you have been off gluten - 2 weeks may not be enough to get the antibodies back or the damaged gut if you have been off for a while. Just saying so that the agony is worth it! The coeliac guy at my hospital at the time said he wasn't convinced testing was worth it unless I wanted the get the gluten-free stuff you can have on prescription - most of it was awful and the nice things still had to be bought from the Freefrom aisle! If I had found a diet that worked that was what mattered.
Ah, that's interesting. I put my GI problems down to yeast - prematurely perhaps - because I'm ok with pasta. As you say, it's all down to finding the right diet for you.
BTW, you may be interested to know I saw a very kind, caring liver specialist today (thank goodness after my last experience) who has dx'd me with Non Alcoholic Fatty Liver Disease, having a fibrosis score of 4, which is not good considering cirrhosis has a score of 6. He says my fatty liver is reacting very badly, causing local inflammation. I recently had a liver biopsy to help the dx. I have a very healthy diet (BMI ~25; age 66yrs) and have been tea-total for about 6m (20-30 units/week previously).
Thanks all - I think it’s def gluten with me. I’ve noticed a bad reaction to bread, sausages (yes breadcrumb I’m guessing), pasta, crackers, biscuits. I’ve decided to have the test - just so I know, then get straight back to GF diet irrespective of result.
No problems for me however taking gluten out naturally reduces inflammation in the human body for a short time.
Yes indeed SashaT64, it is quite common for lupies, given the sensitivity of the whole digestive tract. I was diagnosed as intolerant by my doctor in the 1990s and have been gluten free for over 25 years. To a lesser extent some are full ceoliac. In addition to settling your stomach, you should also find that you have extra energy. Best of luck, Lily
Hi Sasha sorry to hear how unwell you are. I too have the same problems. I am being investigated and am being treated for suspected lupus and I have terrible issues with my stomach I have been diagnosed with Gerd or Gord. Look it up to see if it’s similar to your symptoms. I can’t cope with any wheat, gluten, grains etc amd would be very ill within hours of eating any. I would either eat what you want and suffer the consequences to get the blood tests to pick up the results or ask if you can see an immunologist and have allergy tests. I am currently waiting for my appointment to see an immunologist. I would get all your medical records from every department to file away. When you get them you can highlight anything you feel is important with a marker pen. I got my records and it was a real eye opener I found conditions I didn’t even knew I had and tests results showing abnormalities i wasn't even told about so it may help you to look through all the notes. Keep a food and symptoms journal too as this may help the consultants when you go to see them I hope you finally manage to get them all sorted out. J😀
Sorry to hear what you are going through and thank you for the tips. I see I am going to have to get organised and make sure I am well informed and prepared for all these visits. It’s difficult to get your head around the different tests and what they mean when you have no medical training.
I ate gluten yesterday and this morning and already feel nauseous and have the runs.... only another 13 days to go until the blood tests!
Oh bless you that is what happens to me too. I was told there is coeliac disease or a gluten intolerance which produces the same symptoms. I have had the test I was told I am not a coeliac yet I present with the same symptoms. I would look up your symptoms and get a print out of all symptoms for coeliac disease, chrohns disease and food allergies etc and hand them to your consultant. It all depends on who you get and how thorough they are. You may have undiagnosed illness which they haven’t tested you for yet. Let us know how it goes at your next appointment. J😃
I can eat no gluten. My GP wanted the same, but I refused as there is no cure and I didn't want to go back to feeling so ill again. I just avoid it.
Hi Cam - thanks for sharing. It seems to be a common issue. I was torn between having the test or not. I feel awful already after just one day and have to do this for 14 days. I may not last.....
Yesterday because it was so cold, I just wanted comfort food. Against everything I know I bought a steak pie. We had pie and potatoes with veg.
Last night my nose was blocked with the strongest possible glue and I felt awful.
Today I started with a glass of celery juice. This immediately calms my stomach acid. I have had a few glasses of orange juice which has helped my sore throat.
I am going to make cauliflower and broccoli cheese from scratch for later. I will stay away from gluten today.
A while back I would never have guessed that foods could have such wide ranging effects. Current knowledge tells me different.
It’s amazing how one small thing can gave such an impact. Hope you feel better again soon.
I was diagnosed with SLE and Coeliac disease in the same year. It is not uncommon for autoimmune diseases to overlap. It's important to get tested if your doctor thinks you have Coeliac disease. It can cause vitamin deficiency and anemia and decrease in bone density. After I was diagnosed they did blood tests and a DEXA scan, and follow up tests to make sure I was responding well to gluten free diet. This is especially important as they need to check that your small intestine has healed and that you are not accidentally ingesting gluten. Also, if you have Coeliac disease it means your family members may also have a higher risk as well, and your doctor may recommend testing for them.
Hi Sasha, I’ve unwillingly upset at least one person on here with my anti-gluten stance. But I have been told to definitely stay away, as well as having read a lot of books on why we with AI need to stay away from gluten. I don’t begrudge anyone their choices. If they choose to continue eating gluten, amen to them. But you asked about it and this is what I read from a doctor.
Gluten causes molecular mimicry. Gluten molecules get into your blood stream and our our antibodies view them as foreign invaders, which cause our AI bodies to have bad reactions.
I personally view gluten as poison to those of us with AI. That seems to upset some, but there you go. You asked and this is my answer. Really not trying to upset anyone.
Best wishes to you in your journey.
Yeah I did exactly the same
My stomach better for not eating gluten
My GP wanted to do that test too but I refused to eat gluten for 2 weeks as because all they are going to do if it’s positive is tell you not to eat gluten which you are already doing!!!
It’s difficult isn’t it to go something that you know is going to make you feel worse. I haven’t got a categoric lupus diagnosis- but I do have an AI disease of some sort. So I want to know if this could actually be cealiacs instead / or as well as I suppose.
Best of luck. Let us know.
Definitely. I react to lots of food, including gluten, sugar, coffee (total bummer), processed oils, eggs, tomatoes, sulphites. Well I could go on . And it isn't just stomach issues. I get reflux, joint pain, fatigue, headache. I follow a paleo diet which seems to work for me, but it's so hard going out to eat. I used to love food.
I was diagnosed with coeliac 11 years ago by the GP I was seeing then. It wasn’t however done officially only by illumination diet. I have strictly stuck to a gluten free diet since and have not had any digestive problems since. The thing without the official diagnosis, which requires a biopsy, is that you can’t get any gluten free products on prescription. I also can’t tolerate caffeine or citrus fruit.
That’s great that you can manage with no lupus meds. Do you attribute that solely to cutting these things out of your diet? My cealiac test came back negative but I am def gluten intolerant. I also have an issue with dairy . Not in a position to do without meds though 😢
Thanks for reply. I hate taking meds -always have. I think once AI have a clearer picture of how all this is affecting me that’s definitely something to aspire to. Stay well
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