Celiac-induced Autoimmune Problems Not Fully Responding To Gfcf Diet.

[Woolygimp]

It's an unfortunate fact that many people with Celiac also suffer from a laundry list of possible concurrent autoimmune diseases. I discovered my celiac disease too late, and i developed one or more of these autoimmune problems and they haven't fully responded to the gluten-free diet although other symptoms have.

At this point, I've finally accepted the fact that I probably have Sjogren's disease due to suffering from a dry mouth, dry eyes, and dry skin for almost five years now. It has improved and I do get some saliva/tears now, but it hasn't full returned and it becomes absolutely horrible if I get glutened. I'm still suffering from DH to an extent, even though I've been gluten free for almost two years now. And both me and my endocrinologist think the Celiac disease has caused an autimmune disruption on my endocrine glands as I have very low aldosterone, cortisol, thyroid hormones, and testoerone, and I'm currently on replacement for those.

There's no cure for Sjogren's but it's ruining my life. I've read that some people have responded well to the SCD diet, and even having some celiac-related autoimmune problems go into remission, but I have never read anything about Sjogren's being helped by SCD. Sjogren's itself is pretty common with us; some studies show that it's as high as 30% with people with Celiac, so there's a good chance that it's onset is induced by our reaction to gluten; but why doesn't it always improve when we stop eating gluten?

Is there ANYONE out there that has an autoimmune disease improve while following an elimination diet beyond the conventional Gluten-free Casein-free diet? Anyone following the SCD diet who thinks they may have had Sjogren's with improving symptoms?

I would be far more motivated to begin the diet and "tough it out" if there was any realistic possibility that it could improve my symptoms.

I don't have Crohn's or any intestinal related dysfunction anymore since I stopped eating gluten. Diarrhea, weight gain, etc. have all subsided so if I could just reign in the autoimmune problem? I mean technically, it's "possible" that a bacterial overgrowth causing toxins to leak into the blood stream is acting as a cataclysm for the autoimmune attacks, but I don't know. Read some Sjogren's forums and there's almost no mention of elimination diets, and the disease itself doesn't even respond to other conventional therapies that other AI diseases do, such as prednisone.

[mslee]

Hi,

I have SLE Lupus & some autoimmune thyroid activity, also pre sjogrens & was developing autoimmune hep. when they found the celiac.

The liver has normalized after being gluten free for a year and a half. But other autoimmune conditions continue.

I posted in this thread

https://www.celiac.com/gluten-free/index.ph...mp;#entry580569

I have to run for now, but wanted to share... seems gluten free helps but how much is 100% reversible can only be told with time...I just have to wait & be patient.

There are meds for sjogrens, also you could focus on anti inflammatory diets & sups...like the Mediterranean diet, omega 3s, antioxidants, reduce red meat & saturated fats etc.

Hang in there! Good luck!

[chatycady]

I wasn't diagnosed with sjogren's - I gave up on Dr's. as they could only tell me what was wrong, not what was causing it, or how to fix it.

I had terribly dry eyes, mouth, hair and skin. Eyes were red and scratchy and hurt. Mouth was always dry with NO saliva. It was awful. I went on the SCDiet about 16 months ago and all these symptoms are gone. My sister was diagnosed with the beginning of sjogrens. She is following the diet also and is in remission. She also is in remission with lupus - no drugs.

GRAINS seem to be an issue for people with this disease. SCDiet addresses this.

My hope is, that once my intestine is healed the autoimmune issues will resolve. I believe diet is the cure for auto immune issues. I think of food as medicine and poison. The mystery is to find out which foods are the cure and which are the poison. The SCDiet addresses this too.

By the book, read everything the websites and see what you think.

The cure is slow, but worth it. I knew I was on to something with in a couple days. I believe if you eliminate the irritation the body will heal itself.

Good luck and God bless you!

[Jestgar]

The SCD just seems so convoluted to me. Why don't you try an elimination diet to see if you can pinpoint some food, or class of foods that is making your symptoms worse?

[mslee]

oh, wanted to add I had to play with elimination diets to pin point problem foods. I think there was such severe damage that my only chance to get better was to cut out problem foods.

It will be a couple months until I have labs run again (for lupus/sjogrens/raynauds/liver etc) but will let ya know if there are changes.

[missy'smom]

I recently went in for allergy testing that included a large food panel. I did not go into it with the intention of curing my ails but for other reasons. However, I came out with very unexpected positive changes in my health so I would say that it was very beneficial in pointing out problematic foods for me. According to doctor's instructions, I eliminated all the foods that I reacted to for 4 weeks-so I'm still in the elimination stage right now and I didn't have to start from square one like some elimination diets. My gut feels so much different after meals, don't know how to describe it but it feels nothing really. I guess it used to feel full or digesting, working hard all the time. It's quite a difference. The biggest suprize has been my blood sugars that have dropped. I have keept tight control and maintained it closely around certain numbers for some time so it's fairly easy to see a change and with the elimination diet, I switched almonds for walnuts, beef for chicken and the like and kept same portions so the changes were not ones that would normally affect the blood sugar. In my case it seems clear that it was a change in the immune reaction. I have suspected a possible autoimmune connection with my diabetes for some time but now I seem to have some proof-just need to get the right doctor to run the right test and I'll have final proof. At any rate my blood sugar has droppped to normal non-diabetic numbers every meal, everyday. I still can't get back certain type of lost pancreatic function so I can't go out and eat donuts(gluten-free) but it seems that my body has regained some function and/or the autoimmune attack on the pancreas has ceased.

[chatycady]

I believe you are on to something!!! My whole theory (scientific or not) is to eliminate foods that cause a immune reaction. In turn the healing of the intestine begins and hence the immune system is strengthened and attacks the "correct" invaders.

For me it is working. I know what foods are problems and avoid them altogether. It takes time and energy to figure out which foods are okay and which are triggers, but it is worth it!

[Woolygimp]

I believe you are on to something!!! My whole theory (scientific or not) is to eliminate foods that cause a immune reaction. In turn the healing of the intestine begins and hence the immune system is strengthened and attacks the "correct" invaders.

For me it is working. I know what foods are problems and avoid them altogether. It takes time and energy to figure out which foods are okay and which are triggers, but it is worth it!

I'll be resuming SCD diet. I've noticed that I feel terribly fatigued after eating any type of grains, especially rice.

I also wanted to add that I started taking a medication called LDN (low-dose Naltrexone) and I feel MUCH better. There's a ton of literature out there but it has been shown to help people with all forms of autoimmune diseases by adjusting the T-cells. It has also helped people with Celiac disease. The dryness has definitely abated a good amount since I started this therapy.

Here's the Wiki:

Open Original Shared Link

Here's a good source of information.

Open Original Shared Link

[chatycady]

I read the information on the links you posted. It looks like a good option. For now I'm going to continue the path I'm on. I'm doing very well on this diet and actually enjoy the food. For the first time in my life, I like to cook. Food is no longer my enemy, but my therapy.

I hope the diet works for you too.

[Woolygimp]

I believe you are on to something!!! My whole theory (scientific or not) is to eliminate foods that cause a immune reaction. In turn the healing of the intestine begins and hence the immune system is strengthened and attacks the "correct" invaders.

For me it is working. I know what foods are problems and avoid them altogether. It takes time and energy to figure out which foods are okay and which are triggers, but it is worth it!

I have no problem eliminating grains, but on the SCD it asks you to eliminate all sugars which is much, much more difficult to do.

[Chrissyb]

I have had MS for 10 years now and have been gluten free for 2 years now. I have been improvement in my stomach issues but not in my MS symptoms. I was hoping maybe there would be some improvement but none yet.

[Woolygimp]

I believe you are on to something!!! My whole theory (scientific or not) is to eliminate foods that cause a immune reaction. In turn the healing of the intestine begins and hence the immune system is strengthened and attacks the "correct" invaders.

For me it is working. I know what foods are problems and avoid them altogether. It takes time and energy to figure out which foods are okay and which are triggers, but it is worth it!

Chatycady, how long were you on the SCD before you started noticing an improvement in dryness?

And did you follow the SCD to the letter, or were there additional foods that you left out and additional foods that you included? For instance, I know for a fact that I can't have any milk based probiotics or even the home made yoghurt as I reacted to it.

[Gemini]

It's an unfortunate fact that many people with Celiac also suffer from a laundry list of possible concurrent autoimmune diseases. I discovered my celiac disease too late, and i developed one or more of these autoimmune problems and they haven't fully responded to the gluten-free diet although other symptoms have.

At this point, I've finally accepted the fact that I probably have Sjogren's disease due to suffering from a dry mouth, dry eyes, and dry skin for almost five years now. It has improved and I do get some saliva/tears now, but it hasn't full returned and it becomes absolutely horrible if I get glutened. I'm still suffering from DH to an extent, even though I've been gluten free for almost two years now. And both me and my endocrinologist think the Celiac disease has caused an autimmune disruption on my endocrine glands as I have very low aldosterone, cortisol, thyroid hormones, and testoerone, and I'm currently on replacement for those.

There's no cure for Sjogren's but it's ruining my life. I've read that some people have responded well to the SCD diet, and even having some celiac-related autoimmune problems go into remission, but I have never read anything about Sjogren's being helped by SCD. Sjogren's itself is pretty common with us; some studies show that it's as high as 30% with people with Celiac, so there's a good chance that it's onset is induced by our reaction to gluten; but why doesn't it always improve when we stop eating gluten?

Is there ANYONE out there that has an autoimmune disease improve while following an elimination diet beyond the conventional Gluten-free Casein-free diet? Anyone following the SCD diet who thinks they may have had Sjogren's with improving symptoms?

I would be far more motivated to begin the diet and "tough it out" if there was any realistic possibility that it could improve my symptoms.

I don't have Crohn's or any intestinal related dysfunction anymore since I stopped eating gluten. Diarrhea, weight gain, etc. have all subsided so if I could just reign in the autoimmune problem? I mean technically, it's "possible" that a bacterial overgrowth causing toxins to leak into the blood stream is acting as a cataclysm for the autoimmune attacks, but I don't know. Read some Sjogren's forums and there's almost no mention of elimination diets, and the disease itself doesn't even respond to other conventional therapies that other AI diseases do, such as prednisone.

I have Sjogren's also and it's pretty severe. I have noticed some improvement with it since the gluten-free diet but still have dry mouth and eyes, to some extent. It's a lot better than it was but still annoying and requires diligence in making it more comfortable.

I am not interested in trying a grain free diet because I have no other problems with eating grains, as far as my gut is concerned and feel they are an important part of my diet. They are mainly whole grain in nature and contain nutirents which are vital. Since my Sjogren's IS better than it was years ago, I can live with the way it is now, even though it requires many dental visits to keep things under control.

Sjogen's is a real jerk at times but I doubt it will ever go away completely so just deal wth it.

[Woolygimp]

I have Sjogren's also and it's pretty severe. I have noticed some improvement with it since the gluten-free diet but still have dry mouth and eyes, to some extent. It's a lot better than it was but still annoying and requires diligence in making it more comfortable.

I am not interested in trying a grain free diet because I have no other problems with eating grains, as far as my gut is concerned and feel they are an important part of my diet. They are mainly whole grain in nature and contain nutirents which are vital. Since my Sjogren's IS better than it was years ago, I can live with the way it is now, even though it requires many dental visits to keep things under control.

Sjogen's is a real jerk at times but I doubt it will ever go away completely so just deal wth it.

I was never officially diagnosed with Sjogren's. The symptoms seem to come and go; before my diagnosis my mouth/eyes and such were extremely dry, but as of now when I'm typing this my eyes feel fine, my mouth has plenty of saliva in it (not as much as other people), enough to where I could drool/spit if I felt so inclined. However, the worst is in the mornings.

I'm pretty sure it's Sjogrens but I don't think I have it AS bad as others; that or something is helping.

[lonewolf]

I have had MS for 10 years now and have been gluten free for 2 years now. I have been improvement in my stomach issues but not in my MS symptoms. I was hoping maybe there would be some improvement but none yet.

Do a Google search for LDN and MS. It might be worth looking into!

[chatycady]

Chatycady, how long were you on the SCD before you started noticing an improvement in dryness?

And did you follow the SCD to the letter, or were there additional foods that you left out and additional foods that you included? For instance, I know for a fact that I can't have any milk based probiotics or even the home made yoghurt as I reacted to it.

I have been on the diet for 15 months. I follow the diet closely. I still have trouble with dry eyes if I accidently eat something that is "illegal". I used to think eyemake up caused my eye problems, but I have discovered it has something to do with food. I think the dry eyes and dry mouth comes from a number of different foods, grains one of them, but I believe preservatives and sugar also cause me trouble.

I am able to eat the yogurt, but no other dairy. I can not tolerate any nuts, but coconut doesn't appear to be a problem. Honey, is okay. I do not eat anything that is not of the "legal" list. I struggle with "legal" carbs and must eat very small amounts of them. I eat a lot of olives, dill pickles, cauliflower, cabbage, celery, carrots, onions, yogurt, butter, eggs, apples, pears, peaches, fish, sea food, pork steaks, chicken, and beef. I make bone broth and make lots of soups during the winter.

I have been sick since age 19 (anemic). I was 52 when I started the gluten free diet. So I think my digestive system was very damaged and I don't know if it will ever fully heal. But all my symptoms are gone if I eat foods that aren't a problem for me, but they do return if I accidently eat a "illegal" food. Each set back does get easier.

I've had a set back this weekend, and my eyes hurt. They were red, scratchy and so very dry. When I blink my eye lids get stuck to them. When I close them they bother. It feels like there is duct tape stuck to my eyeball! Tomorrow they will be better and I'll have better vision too.

I really had to think, study and make a mental note of all the foods I eat, how I feel, what symptoms, etc. It is difficult to figure out, but well worth it. What works for me does not work for my sister. I tolerate meat, she can't. I eat eggs, she can't, she tolerates more carbs, I can't. Get the picture?

Good luck and I hope you can discover what works for you, and you are relieved of your symptoms!

God bless you.

chaty

[kayo]

I don't follow the SCD diet but I am dairy, gluten and recently soy free. I've had a lot of improvement in my RA, Sjogren's and gyn mostly due to going soy free.

I've been reading a lot on gluten and soy intolerances and this part of your post jumped out at me:

And both me and my endocrinologist think the Celiac disease has caused an autimmune disruption on my endocrine glands as I have very low aldosterone, cortisol, thyroid hormones, and testoerone, and I'm currently on replacement for those.

I'm reading the Hidden Dangers of Soy and learned soy can cause endocrine and thyroid issues in women.

I've been struggling with some gyn issues and I believe soy may be the culprit.

For more info check out: Open Original Shared Link

I hope this may be helpful. Good luck with your journey.