Cassiecat

[Cassiecat]

Is anyone with Sjogrens having a problem with food intolerance

[maggielee]

Yes actually, been meaning to ask too...stomach is really giving me grief on top of ongoing heartburn.... Let's see.... Forget spicy, garlic is really a no no (,sad). Struggling with fiberous food, so no more white 🍞 bread, cauliflower and even lately broccoli to name a few!!!! So sad 😢, can't eat late not good for visiting relatives who like eating after 7,pm... I am going to have to keep a good diary to figure it out. So eating nice bland food... Was wondering if it was the meds, sjogren s of both..??? So with dry throat - eating pleasures are far & few these days.... So miss some foods... M L

[maggielee in reply to maggielee]

Ps meant no brown bread, white easier... So some flour intolerance of too fiberous???

[Cassiecat in reply to maggielee]

Hi maggielee, anything spicy or things like crackers are off my food list because my mouth is very fragile as the dentist says. It was no trouble to stop as they were causing a very sore mouth. I too shall have to keep a food diary to figure what is causing this itchy rash on stomach.

Thanks.

[Tally in reply to maggielee]

Sorry for delay as only catching up. I was advised to try and follow FODMAP diet and it helps me a greatdeal. I have Lactose Free Milk and had to take foods out that I believed were nutrionally wonderful. !!!

I have Sjorens, Fibromyalgia, IBS and 12 other chronic diseasesthat decided to inhabit. But FODMap worth trying.

[maggielee in reply to Tally]

Many thanks...Just rereading the stream of responses about food intolerances... I am now having problems with chewing & experiencing facial & ear pain so need to change eating habits again... ML

[honeybug]

Hi Cassiecat 😊🌸🌿🦋

I have for decades now. Just thought it related to my IBS mixed/GERD. At one point I was so sick that I had lost a lot of weight due to so much vomiting. One thing I’ve learned is that once a food is removed for a while I can’t eat it anymore. 🤷‍♀️😳. Sorry you are going through it too. I hope you get relief soon. 😊🌸🌿🦋 🤗💕😘

[Tally in reply to honeybug]

Totally in agreance with you Honeycat as like your self Gord and IBS makes food a nightmare. I try to avoid so many foods and found the Fodmap diet more helpful than anything else. I found Helgas Pumkin and 5 seed bread is tolerated only. I feel for one and all of us xx

[honeybug in reply to Tally]

Me too dearxx

[Cassiecat in reply to honeybug]

Hi honeybug, since being diagnosed with sjogrens, over the years every now and again have had very itchy inflamed skin but only in certain areas. Looking back it does seem to be an intolerance, but the tricky part is to find the culprit. Have stopped wheat so shall see what happens.

[HollyHeski]

I have secondary sjogrens, (primary APS syndrome) and over the years have developed intolerances - wheat, lactose and latest fructose!! Also have bile acid malabsorption, Which is causing B12, vit D & ferritin defiencies.

[Cassiecat in reply to HollyHeski]

Hi HollyHeski, reading your reply was very interesting especially the bile acid malabsorption. Not exactly sure what that is but shall certainly look into it.

Thanks.

[Roopavati]

Hi there Cassiecat

Yes food is tricky for me too. I avoid alcohol, bread, dairy, sugar, meats and all hard foods (I miss nuts). I eat lots of fruit for the sweet and water content. My main food type is dahl and rice. It's wet and easy to swallow. It's tasty and made with good digestive spices (garlic, ginger etc) . I also have alot of fruit and vegatable juices. All these are tasty and a treat to eat/drink. Sometimes when I'm off the mark and have something like a pizza I have bad reflux. It's good to have a reminder from time to time that hard foods are no longer on my menu. I also eat between 10am and 7pm with my main meal in the middle of the day. Even with these restriction there is lots of good wet foods to eat. I hope you can find food you enjoy and are satisfied with. cheers

[Cassiecat in reply to Roopavati]

Hi roopavati, as you know, what makes it difficult with sojrens is, different people get a variety of symptoms other than the usual ones. Have sorted out the dry mouth and eyes as best I can, but this itchy rash that appears seemingly out of nowhere is a real problem for me. The doctors have just said dermatitis but not what is causing it. Thankfully it does go and sometime down the track its back again.

Thanks

[Megansheart]

No, I don't have food intolerances, GORD, IBS or reflux but I do have a paralysed stomach (Gastroparesis) which can accompany Sjögrens Syndrome.

Paralysed stomach can cause nausea, vomiting and inability to digest many foods. One of the most distressing features is that one feels FULL after only a mouthful or two of food and one simply cannot continue to eat. Consequently weight loss becomes a big problem.

About 20% of Sjögren's patients (according to the research) are afflicted neurologically and one outcome can be a paralysed oesophagus, stomach and/or gut. A paralysed gut/bowel is like an inertia where it stops working and of course major constipation problems then occur.

People can be affected to different degrees. Some cannot eat anything and have to have a liquid only diet or need to have a jejunostomy feeding tube inserted or in lesser affected Sjögren's people, some may find they can't eat certain foods such as high fibre foods or fats.

Fortunately in Australia we are able to be prescribed Domperidone (Motilium) which is very effective at helping some digestion to take place. A gastric emptying study can be done to determine whether the rate of digestion is slowed or absent.

[Cassiecat in reply to Megansheart]

Hi megansheart, your condition sounds terrible. I've been complaining about an itch and have forgotten how much some others have to cope with. Thanks for your input and may things improve for you.

[evie99]

I've had GERD and IBS for years (living with SS) - Been on medication for my GERD reflux for years - found out it was food intolerances. I looked at the foods I was eating, changed to Ketogenic/Paleo diet - huge change - GERD and IBS gone away - no more medications needed - no sugars/carbs/breads - just fruit/veg/salad/meats/eggs - more natural diet. I was also diagnosed with Coeliac Disease - another auto-immune disorder. So now that I'm off gluten, no more IBS, stomach tenderness, constipation, or GERD symptoms. Been an eye opener. My stomach is healing as I'm no longer eating these foods known to be inflammatory foods, and my SS symptoms reduced also

[Xiao18 in reply to evie99]

Hi evie99,your information is very interesting. I am amin intolerant. I am on elimination diet wich is no sugar , no wheat, no dairy , no egg and no amin contained vegetables, and have lost a lot of weight. How about you as you on the Ketogenic/Paleo diet. Thanks for your any suggestions.

[Supul]

Hi Cassiecat

Yes, I suffered badly from food intolerances a few years ago. I suffered digestive issues mouth to .... sometimes I would react straight away, to certain foods, stomach cramps, vomit, diarrhoea, rash, itchy skin, burning mouth..... such a miserable time!

The symptoms and intolerances were new to me. I had become very unwell and was undergoing tests. I was diagnosed Sjogrens. Then, I learnt, Sjogrens had shown in my blood test 9 years previously. I had not been told.

So, I was prescribed hydroxychloriquine. Unfortunately, my health deteriorated further, wbc and neutrophils low, antibiotics 4 times, back to back. I ditched the meds. (I'm not suggesting anyone takes my decision as advice. Hydroxychloriquine works very well for many people). I decided to try and help my immune system.

I began taking vitamin c, vitamin d, omega 3,6,7. Slowly, but surely, my food intolerances have almost disappeared.

May all be a coincidence. I will never know for sure.

Good luck.

[Cassiecat in reply to Supul]

Hi supul, I know what you went through in the beginning, its very difficult to cope with. When I was diagnosed with sjogrens, bought the sjogrens manual and began to understand what was happening to me. This intolerance pops up every now and again for me and it seems may not always be the same culprit, so its trial and error. So glad you are doing better.

[Xiao18 in reply to Supul]

Hi Supul, how much vitamin C, B and omega you taken a day? And how is your wbc and neutrophils level now ? Because mine are low as well and i take Hydroxychloriquine daily.

Thanks for you sharing.

[Supul in reply to Xiao18]

Hi Xiao

I take Holland and Barrett C250-500mg with rose hips immune system support tablets. One a day, but two a day, if feeling sluggish.. I tried different brands, types, this one suits me, is easy to take, and reasonably priced. If my guts happy with it, I'm happy with it! Lol.

I take Holland and Barrett seabuckthorn capsules which contain Omega 3, 6, 7. They were recommended by a consultant at a bssa support group I attended. I don't know the strength as I took the last one in a packet today, so will buy more on Monday. I've taken these 2 a day first 2 weeks, now one a day. They are not so cheap. However, they have helped enormously with my dry eyes, and dry mouth, as well as skin and vagina.

I take vitamin d 800iu a day, prescribed by the GP. I believe I could do with a higher dose. My level has gone up from 49 to 62. If I have a lot of joint pain, I take 1600iu for a couple of days. I believe they help. However, when I run out of my prescription, I do feel the pain.

I also use better you magnesium spray on joints.

I don't take b vitamins yet. Though, I plan to, when I have seen my endocrinologist. He has been titrating my levothyroxine and I didn't want b vitamins to impact on my bloods. I plan to add b complex as well as b12 supplements.

Occasionally, I resort to codeine 8/500 meds if I'm in a lot of unbearable pain.

I try and eat gluten free mostly. My diet is mostly fruit, vegetables. Uncooked vegetables caused my mouth to be very sore. Thus, I do steam vegetables. I also drink 2 litres of water a day.

Hope some of this helps.

[Supul]

Ps

One change I made was, I stopped eating bread with gluten. I have only ever eaten shar gluten free, wholemeal, or vitality bread. This change, I believe, is one of the most significant changes I made.

Also, I used to drink 4-5 glasses of wine with weekend meals with friends. Now, I do not, cannot, drink alcohol.

[Cassiecat in reply to Supul]

ps. I too have gone off wheat products as before this happened I overindulged in raisin bread where before didn't eat much bread at all. Read somewhere you can have a problem with wheat but not necessarily glutin so giving it a go as don't really have many digestive problems.

[Supul]

Yes, Cassiecat

Wheat, was my first clue that food was causing intolerance.

I used to eat weetabix for breakfast. Then, again before bed, if I had skipped a meal and felt hungry. Suddenly, I started to react badly each time I ate weetabix. Itchy skin, rashes, digestive issues.

I stopped weetabix only to develop other intolerance (often food containing wheat).

I waited 9 months for an appointment with an immunologist as additionally, food, toiletries, drinks, etc intolerance, were becoming unbearable.

Pinning my hopes on finding the root cause of the reactions, so that I could avoid certain foods and products, left me disheartened, and very annoyed.

The immunologist listened to my recent symptoms. He totally disregarded that autoimmune disease would cause allergic/intolerance response. He perceived I was suffering anxiety and discharged me.

I felt very let down, annoyed, and explained the situation on HU. I was absolutely reassured that other autoimmune sufferers also have such symptoms. Also, research informed me, that such allergies/intolerance are often experienced with autoimmune disease.

I put in a telephone complaint to the hospital regarding the appointment. I was happy to get my view across, to suggest that he had no authority or evidence informing his opinion, of what autoimmune patients suffer. I told them I had no need for a response.

However, I was delighted to receive a letter of apology from the hospital, and from the consultant, who was out of the country on training!

Since then, I joined BSSA, research, read, trial and error... slowly, but surely, I'm finding my way. I have learned so much about nutrition, the environment, relationships, myself... what a journey!!

[Cassiecat]

Hi Supul, Have stopped eating wheat products and symptoms seem to be just a little better. Problem with intolerance, I've read, it can be up to a couple of days before you get a reaction so it can be trial and error. Have been advised to stay off at least a month and if it is wheat that is time for the culprit to get out of my system. So shall see what happens.

Thanks

[NatAB]

I have found following the Plant Paradox by Dr Gundry is doing wonders for my Sjogrens, not even using drops for my eyes, seem to have more moisture in my mouth. For me losing the lectins (wheat is a lectin) changed everything only once did something not agree with me and it was xylitol. I used it in a cake, tasted great but boy did my stomach think otherwise.

[Cassiecat in reply to NatAB]

Hi NatAB, have been off wheat for a few weeks now and my itchy, inflamed skin had gone but my stomach does get uncomfortable after eating. Your comment about xylitol was very interesting as I chew the gum for dry mouth. Feel my problem is like an intolerance so changing what I use for dry mouth might very well make a difference too.

Thanks.