Author Topic: Article about SJS and Food sensitivities  (Read 484 times)

Deb 27

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Article about SJS and Food sensitivities
« on: August 26, 2019, 12:57:07 PM »
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676776/?fbclid=IwAR3hwutaFW7rdyQWgradFQHWRU5XieJHFmFXgwdR1uaQYkKDApW7SmnLcCo

I saw this on FB. I have noticed since getting auto immune disease that I have reactions to a lot of foods giving me GERD and making my joints hurt.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

rapnzl

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Re: Article about SJS and Food sensitivities
« Reply #1 on: August 26, 2019, 09:39:22 PM »
Thanks, Deb!
We need more research like this!  :)
Wheat, and it's cross-sensitivity with milk products. Have been immersed in studying this lately....so I may be biased.  :-[

Sharon

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Re: Article about SJS and Food sensitivities
« Reply #2 on: August 27, 2019, 03:07:15 PM »
Thanks for posting Deb, this really is an important study that can explain our gastro symptoms.
One of the amazing findings is the linking to fatigue, a prominent symtom of many AI conditions.
Wondering- does gastroparesis count as a "metabolic disorder"?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
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Skylar

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Re: Article about SJS and Food sensitivities
« Reply #3 on: August 27, 2019, 05:31:52 PM »
I'm not surprised by these results.

I've said here many times that my diet has saved me; put so many of my health issues into remission including things like fibromyalgia. I still have IBS but it's so mild and under control. Just controlled by diet, no medication. I save a ton of money not having to buy all the prescription and OTC medications I used to take. I still take thyroid medication and restasis - diet couldn't fix everything.

I follow Dr. John McDougall's diet which is a whole plant diet - no meat, dairy. I also did his elimination diet to eliminate foods that cause me problems - discovered problems with corn and rice. I was pleased to see corn and rice mentioned in that paper, along with wheat (I have celiac's disease).

People have asked me what do I eat when I remove meat and diary etc. but frankly my food is more interesting and varied than when I cooked and ate meat.

irish

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Re: Article about SJS and Food sensitivities
« Reply #4 on: August 27, 2019, 10:42:30 PM »
Gastrioparesis is a neurological issue caused my neuropathy in the colon. Actually, one can have the slow movement of food in the esophagus, stomach and small and large intestine. The simple explanation is the the nerves that stimulate and "run" the GI tract don't get the message to kick in the movement of food and stool through the tract. The name of this process of moving the food through the GI tract is referred to as peristalsis.

I am of the opinion that this is another of the health issues that plague Sjogrens patients. Doctors are really slow (or have been past years) about identifying this issue. I think that if one has Sjogrens and notices that they are having bloating of stomach/intestines with a lot of gas that builds up, there is a very good possibility of gastroparesis. Also, increase in constipation can enter in also. After a while we would do well to ask for a referral to gastrointestinal doc for a work up. It always helps to know what is going on with our body as we often find out how to deal with it. Also, knowing what is going on decreases the anxiety that we harbor with unexplained symptoms.

When the nerves aren't stimulating the gastrointestinal tract people have been known to get so constipated that they can literally get a really bad taste in their mouth plus pain and fullness in their stomach. This can be from constipation that is really bad. If one is having a bowel movement every day or so and still having these problems (bloating etc)  it can be that they are are just moving their bowels a little and the build up of stool continues every time they eat. This can really make a person down in bed sick if it continues. These symptoms need GI assessment in order to be resolved so one feels better. Take care. Irish

Sharon

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Re: Article about SJS and Food sensitivities
« Reply #5 on: August 28, 2019, 02:01:55 PM »
irish- Thank you for all that important information! You explained it far better than my doctor! I have an official diagnosis of gatroparesis but have received no treatment for it. My gastro doc just said it comes together with SS and to eat small meals throughout the day instead of large ones and to add fiber. This has not helped.
Any suggestions?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

irish

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Re: Article about SJS and Food sensitivities
« Reply #6 on: August 28, 2019, 07:39:50 PM »
Someone will come along who suffers from this. I know that some people take a drug that starts with a D. Domeperone??......it helps them a lot. I think if you go and do some searches you will find some information. When I get in need of more info I tend to do searches that are like this.....without the periods.  gastroparesis discussion forums

This simple statement with the name of the diagnosis in front will put you on forums where people visit back and forth. You will find some really scary info, some really dumb info and everything in-between. There are usually many threads to choose from. I need to bone up on gastroparesis so I can't be much help now. also, one can pick up info and then do other searches and see if what you picked up on discussion forums rings true. Don't believe everything you read in other words.

I know that the foods you eat can cause issues for some and need to sort out the diet. Also need to make sure that bowel movements are timely and adequate. Main goal is to keep food moving through the esophagus, stomach and colon as good as can be expected. Also, many times people see neurologist to get input on the neuropathy that is affecting these nerves. Good luck Irish

You have a gastroenterologist so I hope he can pick up some more info to give you.
« Last Edit: August 28, 2019, 07:45:22 PM by irish »

Sharon

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Re: Article about SJS and Food sensitivities
« Reply #7 on: August 29, 2019, 04:50:57 PM »
Thanks again irish, I have been neglecting this symptom as I have so many other symptoms I need to treat,
but the article Deb posted really highlighted the connection between the gut and SS.
It would be interesting to see if improving gastro issues would help with additional SS symtpoms.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

warmwaters

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Re: Article about SJS and Food sensitivities
« Reply #8 on: September 09, 2019, 01:23:10 AM »
For those who have gone to a vegetarian diet (or mostly so), how do you deal with fiber? I have IBS, and after a lot of work with a very good gastroenterologist, her conclusion is that I'm particularly sensitive to fiber. While usually the advice is to increase fiber over time to stabilize the diarrhea, it's made my diarrhea much worse every time.

Anyone else dealing with this? If so,... any advice. I'm suppose to keep my fiber around 15g per day, which would be tough on a veg diet. And make most of it soluble fiber.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Judie P

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Re: Article about SJS and Food sensitivities
« Reply #9 on: September 12, 2019, 01:43:21 PM »
Hey, Deb.  My biggest Sjogren's problem is intestinal.  Wow, it has helped to be off dairy for a while.  However, the trauma around having a colonoscopy, which required a low fiber diet for two days (no fruits, vegetables, beef, nuts, etc.) of pureed white stuff, 3 days of clear liquids, 3 days of taking Gavilyte (5 times, 2.5 gallons total), no sleep for days, and a lot of gas, my intestines have not been right since.  Hate it. 
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

irish

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Re: Article about SJS and Food sensitivities
« Reply #10 on: September 12, 2019, 10:06:39 PM »
Judie, I am wondering if there was a reason for having such an intense bowel prep? I had 3 bowel preps in 2 months last fall and one this May and I have to eat light for several days and then liquid for so long and then have Golightly 1 gallon in a divided dose the evening and early morning before. Those preps knock me down a lot also and especially because I was anemic due to bleeding of my arterial venous malformations that I needed lasered 2 different times.

I can't imagine having such a stringent prep. I would be laying on the floor. Thanks Irish
« Last Edit: September 14, 2019, 05:07:08 PM by irish »

Deb 27

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Re: Article about SJS and Food sensitivities
« Reply #11 on: September 14, 2019, 02:52:49 PM »
Judie, that sure sounds like a horrendous prep!!!! After you had already been through an ordeal with the C Diff......... If there was any C Diff left, that prep sure would have washed it out!!!! LOL....... I hope in time things will get better for you.  I went through horrible problems with colitis for years. Finally got to Mayo Clinic and they diagnosed it. It took surgery to take out the inflamed area to normalize things for me. I lived in agony for years. Now, I have to be careful and take probiotics, strong ones, called VSL #3.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

rnathans

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Re: Article about SJS and Food sensitivities
« Reply #12 on: September 16, 2019, 08:36:59 PM »
Regarding gastroparesis, I had really horrible gastroparesis years ago. I lost so much weight that I needed a feeding tube. But then my neurologist and rheumy started treating me with heavy duty immune suppressants- initially cytoxan- a strong chemo agent and within 6 months I could ditch the feeding tube. Over the years I have been on other things but for the last 2 years I have done rituxan infusions every 5 months and my gastroparesis is the best it has ever been. My system still moves slower than a normal person but I can eat relatively normally and maintain my weight. I do also take domperidone daily and zoltan for nausea when I need it.

irish

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Re: Article about SJS and Food sensitivities
« Reply #13 on: September 16, 2019, 11:10:57 PM »
That is such good information for all of us to know. We don't get much info from people who have been was incapacitated as you were who took immune suppressants and improved. So glad to hear you are doing so well. Also good to know that the Rituxan is helping you.  Feel free to offer any more info when you can. Good luck. Irish

rnathans

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Re: Article about SJS and Food sensitivities
« Reply #14 on: September 17, 2019, 08:38:00 PM »
Thanks Irish. I certainly will help when I can. I was very fortunate that I had doctors willing to pursue this with me. We are so misunderstood, there is so much lack of knowledge on the part of doctors and so much unwillingness to think outside the box. Considering I am also seronegative and with an equivocal lip biopsy that my rheumy insisted on rereading herself ( did not have enough foci but had some) I am most fortunate.