Sjogren's Syndrome and Coeliac disease.

[maxie4969]

I've had Sjogren's for over 20 years now and am having issues with bloating, IBS, and food intolerances and constipation. Was wondering if anyone with Sjogren's has also been diagnosed with coeliac disease and how they got diagnosed as I would like to get tested.

[weathervane]

Hi maxie , i have Sjögren’s and IBS , i had the same symptoms as yourself. Things did get worse some years ago, blood test forCoeliac was negative , i then had worsening of symptoms and had an endoscopy which showed i have diverticulitis. I use only a small amount of powdered garlic and less onions and avoid any too spicy or rich and things have settled down. I don’t know if this helps, best wishes

[maxie4969 in reply to weathervane]

Thank you. I was diagnosed some years ago with diviticulitus. But had problems with constipation and blood in toilet bowl. After antibiotics and movicol opening medicine I was sent for colonoscopy but had blockage in upper small bowel. Was told to go for another colonoscopy but declined. It's taken ages after that to regulate my bowel again. I thought I might have Coeliac coelia disease. How did you go about having your test for Coeliac disease. Was it through your GP .

[maxie4969 in reply to maxie4969]

sorry you went for a blood test. I'll have to see my new GP about the blood test. But I'm thinking he wont like that I didn't have another colonoscopy. Thanks for answering.

[maxie4969 in reply to maxie4969]

I find it hard to find a goodGP who understands Sjogren's. With Sjogren's you get very dry, I should drink more fluids to help with the constipation.

[weathervane in reply to maxie4969]

It was my gp who organised blood tests, do you have a rheumatologist as might be worth discussing with them as well.

[maxie4969 in reply to weathervane]

seeing Rheumatologist Rheumatologist end of this month. Can discuss things.

[weathervane]

ps sometimes the treatments for Sjögren’s can exacerbate problems

[Heritage1961]

Hi Maxie,

I have Sjogrens and Food Intolerancesfor years but worse in past nine years. A DNA wellness test showed Celiac tendencies....but test by Doctor did not...but def intolerant of wheat & lactose issues. Have had boutsof diverticulitis and get what I call bouts of painful braxton & hix like pains....but feel this is more related to pancreas as has only been happenning since Covid Immunisations....you forget about other associated organ issues....but I now have a Sjogren Worksheet which shows all issues associated with Sjogrens.

This would have come in handy 29 years ago. I monitor my diet...with food which helps prevent gut attacks along with probiotics to help maintain a healthy gut. Tumeric/Ginger/Lemon drinks and Cabbage based meals do seem to help....the thing is my digest juices do not function like they did 29 years ago...so have to give it a helping hand. I also make up Beetroot/Carrot/Celery/Apple & Mint juices as well.

I can drink easier than I eat....re swallowing/choking issues at times...especially when over fatigued.

[maxie4969 in reply to Heritage1961]

Thank you for your reply. I'll have to get the Sjogren's worksheet too. I have food sensitivities. Sensitive to cow's milk, peanuts, eggs. Bloat up with bread. Tested allergic years ago to the ryegrass. Coffee causes reflux and not able to sleep so stopped having it. Although love coffee. Always have to have a drink with every meal otherwise risk of choking.

I realise I have to study up on how to have a healthy gut. I have problems there now apart from the basic Sjogren's symptoms I've had for years. Thank you.

[harmony2]

Yes, I was tested for coeliac and various gut problems, all ordered through GP.

I guess it’s a good thing. None of them came up positive so I just continue with irritable bowel syndrome for 10 years. Had some serious flareups of all the symptoms and more than usual pain about a year ago. Gp retested for those things, but again nothing untoward was found.

I have tried all sorts of elimination diet is dairy, gluten, sugar, don’t remember which others now, but I tried loads of them over the years. No benefits.

I have developed an egg allergy so I have to avoid that totally. Otherwise I have ~18 hours of such stomach distress and running to the toilet six and seven times with severe pain that it’s absolutely not worth having food with egg in it.

I’m fairly convinced that all of our systems that require moisture are affected by Sjogrens. Yes, you are processing correctly — that would be basically each of our body systems!

I ingest lots of water, especially 2 cups of warm upon arising for the day. I keep a flask of warm water overnight and drink 500 mls during in the night if I get up, which I do pretty much every night. ***Sip slowly, initially , if have dry esophagus or it’s the sides stick together and it’s quite painful to swallow. I don’t think any damage actually happens but it’s painful.

Take pilocarpine with the amount of water that you need to, or a little bit of food (not a full meal, because if I take it after a full meal, I find it has no effect).

Eat lots of fibre — for me this is three servings of vegetables with evening meal. Shredded wheat 2x/day as snack. Porridge in the morning for breakfast.

I drink my water hot or half hot half/ half cold, so it comes out warm-ish, because cold water give me a stomachache.

I’m home a lot so I am close to the toilet most days. but if I have to travel some place where I may not have a toilet nearby I will preventatively take half of a loperamide. (if you only can get the capsule form, pull the capsule apart. Pour the powder into a little bit of water and drink half of it.) I’m very sensitive to it so if I take 2 mg (full tablet) I need to be prepared for it to slow my system, possibly too much.

About a year ago I got what is called a radar key you can buy them at Mobility shops. It gives a person access to disabled toilets. App on mobile helps find the toilets. Download ahead of time. (this makes me realise how little I go out because I’ve only used it once!)

[harmony2]

part 2). Forgot to say …

diarrhoea.

***Artificial sweeteners, even small amounts such as in chewing gum, I believe, are what caused the flare up of gut pain and diarrhoea last year (!!!)

similar to Heritage1961 , I have to limit some foods, eg, sautéed/fried foods especially onions, which produce

I have to stay upright* 30 minutes after I eat or drink or get reflux. *not even to bend over to pick an item up from the floor and definitely not lean long enough to tie my shoes.

(Hmm, maybe it’s onions altogether. I stopped eating raw onions years ago because I can taste them for almost 24 hours. It’s as if I cannot clear the taste with my minimal/poor quality saliva.)

I have avoided caffeine for ~15 years so I don’t know it’s effects on my digestive system.

Also, I think foods with gentle fibre (ordinary vegetables brussels sprouts , cauliflower 🥦 🥕 , nothing like prunes, dried fruits

I think sugar may have aggravating effects.

maxie4969 What are you discovering?

[maxie4969 in reply to harmony2]

Thank you for your reply. I have had Sjogren's so long now but things are changing lately. Yes have IBS. Can't have eggs, upset stomach, coffee gives reflux. Have to eat more fibre. Take Benefibre, it seems to work okay. I too probably only have the IBS. Recently had an episode or flare up if that's what it's called. Stomach pain after eating in the evening. Had blood in the toilet bowl. GP gave me antibiotics and told me to take Movicol for constipation daily increasing to up to 8 satchets in 4 days. It worked. To me it seemed I had a stomach infection because I had no pain after that and bowel clean out. But GP sent me for colonoscopy but they couldn't complete it because upper bowel was not emptied. They wanted me to have another colonoscopy but I declined. Have been taking Movicol again to try and get my bowel regulated. All the trouble you go to to have a colonoscopy and it doesn't work but wrecks your system. Puts it out of whack. GP probably doesn't like me for not doing it. He's a new GP. I had to change GP because my old one was not bulk billing anymore and was charging $85 dollars with half back with Medicare but I couldn't afford it. This new one bulk bills but not as good. Where do you find a GP who is up to date on Sjogren's?

[Kareela]

I have Primary Sjogrens and Coeliac disease and suffer from IBS now. I have no idea what food causes my bouts of diarrhea but it is a real nuisance socially. I have an appointment soon with a dietician who may be able to offer some solutions.

I joined the British Sjogrens Syndrome Society (bssa.uk.net) and they send out regular informative newsletters about Sjogren's with articles by specialists and comments from sufferers. I wish there was a similar organisation/support group in Australia.

Also joined the Australian Coeliac Society and they are wonderful at providing information, recipes and suggesting products and places to eat.

[maxie4969 in reply to Kareela]

I think I might ask my GP if I can be tested for Coeliac. I know I have IBS. GP previously diagnosed me. I have trouble with constipation never diarrhoea. Probably don't drink enough water. Have to watch my diet now more seriously.

Have you seen the group on Facebook? I haven't. Tha.nks for the reply.

[ilikered in reply to Kareela]

I am s coeliac too, aged 62 n diagnosed 40years ago.. I Don't have a diagnosis of sjogrens and only recently found out what it is. I have had bsd mouth ulcers on n off for nearly 10 years and wondered about sjogrens. How do people present n how us it diagnosed?