Celiac And Sjogren

[chojny997]

Hi

I come from Poland

I am 28 and I have celiac and sjogren

I want to stop sjogren syndrome.

My reumatoloyst said that my sjogren is secondary sjogren and celiac and sjogren this one disease.

My test results (decmber 2008)

A section of the small intestine mucosa with a completely smooth surface, without outlines of villi and intestinal crypts.

The stroma shows an intense chronic plasma cell inflammation.

Intraepithelial lymphocytes >40 IEL/100 EC.

The morphological picture corresponds to villous atrophy IIIc grade acc. to Marsh classification.

My test results:

4 December 2008 ( diagnosis) :

Endomysium IGA +++

Endomysium IGG ++

Gliadin IGA ++

Gliadin IGG +

16march.2009

p/ transglutaminazie EMA IGA - 66 ( 0-8 )

p/ endomysium TGA IGA - 529 ( 0-20 )

3.april.2009

p/ transglutaminaze TGA IGA - 9 ( 0-8 )

16.april.2009

p/ transglutaminaze TGA IGA - 6 ( 0-8 )

p/ endomysium EMA IGA - 143 ( 0-20 )

10 may 2009

p/ endomysium EMA IGA - 85 ( 0-8 )

My antibody to be down. I wait on moment, when my antibody ( transglutaminaza, endomysium, gliadyn ) to be zero.

But my sjogren syndrome is excited / incited / excited

My eye is dry, my mouth is dry but I have a little salivation and tears.

I dont to lose salivation and tears.

My pain in joint ( fingers hand and fingers in my legs ) is big.

MY QUESTION:

When my sjogren to be stoped.?

I debate - My sjogren is dependent:

my antibody or my situation in my intestine?

In february I was in hospital on rheumatology

MY antibody :

RF is normal

C3 is normal

C4 is normal

ANA is negative

C anca is normal

p anca is normal

Diagnosis doctor- secondary sjogren

biopsy salivary gland focus score 4

my diet:

1) fish

2)egg

3)turkey

4)rice

5)potato

6)broccoli

7)carrot

I make my diet to steam machine.

I take too ,steroid of reumatologist , omega 3 suplement.

this is my all diet.

Later I want to eating also bread(rice), milk,butter,cheese, all vegetables and fruits.

I am ready for this diet in my LIFELONG, only I want to stoped my sjogren syndrome.

I want to know yours opinion.

Thanks everyone

Paul

[gfb1]

the combination of celiac disease and sjogren's is not unusual. however, depending on the degree of damage done to the tear glands -- you may, or may not, have recovery of the symptoms of sjogren's.

my wife was diagnosed with celiac disease 10yrs ago, and, nearly simultaneously with sjogren's. on the advice of an opthamologist, specializing in sjogren's, had ductal plugs placed in the lower tear drainage ducts. this helped the tears that she produced stay in the eye for a longer period of time and significantly improved her dry eyes. she also uses natural tears regularly throughout the day (i forget the product name; but, can ask if anyone is interested). she also drinks plenty of water, which helps with dry mouth and associated hydration also makes a difference in helping her eyes.

[chojny997]

Hi

If sojgren appears in the untreated calves is secondary to the disease.

If he was by itself was the original.

Secondary Sjogren occurs in the course of other autoimmune diseases.

Using the gluten diet, rid of the disease antibodies visceral and thus eliminates the process.

There is no gluteny there is no sign of calves.

And if the disease off the basic theory to stop the progress of secondary diseases.

Is your diet check with the wife of the visceral disease?

Is the diet helps reduce the symptoms of Sjogren.

On another forum I read that , gluten-free diet, which helps, even write that they are beyond Sjogren, but any error increased their dietary symptoms of pain, including arthritis.

Please describe how it is with your wife?

[heathen]

Celiac and Sjogren syndrome are related because they both involve the body hurting itself (autoimmune diseases), but I think they are both considered independent diseases. At least I've never heard of one being caused by the other, but many people with one autoimmune disease will have another autoimmune disease as well. You unfortunately have both. gfb1 is right--the best thing to help with the Sjogrens is to drink water regularly to keep your mouth wet and use eye drops regularly.

[Gemini]

I have both Celiac and Sjogren's and the degree of relief achieved after going gluten-free greatly varies. You cannot "cure" an autoimmune disease by going gluten-free but you can diminish the symptoms greatly, most of the time, by sticking to the diet. This will calm your immune down and help with symptoms.

I use Restasis, which is a pharmaceutical eyedrop which cuts down on inflammation in the eyes. It has made a tremendous difference. The tear duct plugs, which can be helpful, are not an option if your lower eyelid turns inward because the plug will rub your eye and iritate it further. I was actually glad my eyelid turns in a bit because I did not like the idea of putting a plug into the eye area. For those who are candidates for the procedure, however, it has shown it to be helpful.

For the most part, you can make symptoms better but you will always have Sjogren's and the resultant problems. Are there any eyedrops like Restasis available to you in your country?

The antibody levels will never likely reach zero. There are normal ranges where the autoimmune reaction will not happen so this is why zero is not given as a goal to reach. I have lowered mine to extremely low levels but still have Sjogren's. It is very, very common with Celiac. My eyes are 90% better than they were at time of diagnosis but during allergy season, I still have minor problems. As long as you do not have an underlying eye disease that could threaten your eyesight, Sjogen's can be managed well but symptoms will return from time to time. It's another thing you have to get used to. Stopping Sjogren's completely may not be possible but it can be made better.

[chojny997]

hi Gemini!!!

thank you very much for your reply. Here in Poland it is very difficult to find someone who is ill at Sjorgena and Celiac. Doctors do not know how to respond to my questions.

I wanted to ask you yet;

1. whether you are present (+) ANA antibodies?

2. whether you are present (+) reumatoidalny factor?

3. or eat grains - rice?

4. difficult to achieve zero endomysium antibodies (EMA) and transglutaminazy (TGA)?

My eyes are not glands Meiboma imam problem with dry mouth.

[Gemini]

hi Gemini!!!

thank you very much for your reply. Here in Poland it is very difficult to find someone who is ill at Sjorgena and Celiac. Doctors do not know how to respond to my questions.

I wanted to ask you yet;

1. whether you are present (+) ANA antibodies?

2. whether you are present (+) reumatoidalny factor?

3. or eat grains - rice?

4. difficult to achieve zero endomysium antibodies (EMA) and transglutaminazy (TGA)?

My eyes are not glands Meiboma imam problem with dry mouth.

Your welcome! To answer your questions.....

I have a very high positive ANA, Rheumatoid Factor and I am positive for the Sjogren's antibody, called the SS-A and SS-B. I have been gluten-free for 4 years now and have absolutely no symptoms for RA or lupus, which are the two main diseases they look for in a person with high numbers like those. My Sjogren's causes extremely dry mouth and eyes for me but the symptoms, which still can cause me some discomfort, are much, much better than they used to be. Another symptom not mentioned much here is sensitivity to light. Four years ago, I had to practically wear my sunglasses in the house, my eyes were so sensitive but now they are much better, with treatment and the gluten-free diet.

One of the things which can happen is that you become somewhat used to the level of dry eye and mouth you suffer from and don't think it as bad as the doctors seem to think it is. Because I was so bad 4 years ago, what I suffer from now is nothing and I deal with it. I have no other choice.

Yes, I eat grains....any and all that are gluten-free. I don't seem to have any issues with grains. I prefer brown rice to white because it's a whole grain. However, I do not overdo it and get much of my fiber from veggies and fruit.

The EMA test which I had done was not a numerical test....it shows either positive or negative. It is used for diagnosis purposes only. I have never had that re-tested. It was positive at time of diagnosis.

My tTg has been re-tested and that shows well into the normal range. I also have Hashi's thyroid and that can influence a tTg level so I highly doubt a person with 4 autoimmune problems like myself will ever see a zero tTg level. Other autoimmune diseases can affect this also. If it were meant to go to zero, that would be the level given on the lab report. But, depending on which labs are used, whatever normal range given is what you should strive for. That shows your autoimmune reaction has calmed down to normal levels probably consistent with the general population.

If you are looking to see if you have been compliant with the diet, have your AGA IgA and AGA IgG levels checked. That shows if you are getting gluten in somewhere. I am not sure if these tests are done/available in Poland, though. Maybe they go by a different name....not sure. I apologize if you have already given this information but were you diagnosed through blood work?

I wish I could have better news for you but it all depends on many factors whether or not you can reverse the symptoms of Sjogren's. I was 46 when diagnosed so went many years with damage being done. You are younger so maybe it will work out better for you but be very patient....it can take time. I would recommend going to the dentist every 3 months for cleanings, if at all possible, because your teeth will need extra care with Sjogren's....if you want to keep them! We have less saliva, which acts as a protector against bacteria in the mouth, so take care of them well. If you have any more questions, ask away!

[chojny997]

The translated your post.

Please use simple words - because my English is not good.

It will be easier for me.

I understand that you already have other autoimmune diseases, not only celiac and Sjogren.

I read a lot and learned that lupus, reumatolic artrist, Sjogren, may be secondary to celiac. Sometimes, these diseases can also coexist. And reading in the article that the researchers were fascinated, that antibodies against the thyroid in humans disappeared for celiac patients after 3-6 months.

That such a rule can be adopted for the secondary disease.

Your antibodies are in the standard (endomysium, gliadyn, transglutaminaza) - as written.

The aim is for the celiac to be 0. Yes, my doctor says. Any other value other than zero will activate the disease. If your diet is good, to thine Ana should be small, as I have given you an example of the thyroid. If the diet helps you to Sjogren evidence that this is secondary, but I do not understand why you have a high ANA.

You still have thyroid disease, may, therefore. You're saying that you have 4 autoimmune disease How does it hurt to not know from where the disease.

Now I await the outcome of antibodies (EMA, TTG). I expect approximately zero. How do you fell antibodies, your Sjogren was immediately better, or how many wait on improving?.

[Gemini]

The translated your post.

Please use simple words - because my English is not good.

It will be easier for me.

I understand that you already have other autoimmune diseases, not only celiac and Sjogren.

I read a lot and learned that lupus, reumatolic artrist, Sjogren, may be secondary to celiac. Sometimes, these diseases can also coexist. And reading in the article that the researchers were fascinated, that antibodies against the thyroid in humans disappeared for celiac patients after 3-6 months.

That such a rule can be adopted for the secondary disease.

Your antibodies are in the standard (endomysium, gliadyn, transglutaminaza) - as written.

The aim is for the celiac to be 0. Yes, my doctor says. Any other value other than zero will activate the disease. If your diet is good, to thine Ana should be small, as I have given you an example of the thyroid. If the diet helps you to Sjogren evidence that this is secondary, but I do not understand why you have a high ANA.

You still have thyroid disease, may, therefore. You're saying that you have 4 autoimmune disease How does it hurt to not know from where the disease.

Now I await the outcome of antibodies (EMA, TTG). I expect approximately zero. How do you fell antibodies, your Sjogren was immediately better, or how many wait on improving?.

Sorry about the language problems, Paul! I think I may be having difficulty with what you are asking so forgive me and I will attempt to answer you plainly.

All of the autoimmune diseases you talk about are common with Celiac. Whether they co-exist or are caused by Celiac is yet to be known but I think Celiac causes many others if you go a long time without getting a diagnosis. When you eat gluten and activate your immune system, it stays that way until you stop eating it. I went 20+ years before I was diagnosed so it was a long time to have inflammation and damage.

Thyroid antibodies do not disappear in many people after 3-6 months so that is untrue. It depends on how long and how badly your thyroid was damaged. It has taken me 4 years to bring my thyroid antibodies down and it still is not in the normal range yet. I am very, very close but not normal yet. However, my thyroid function has gotten better. I think there are many schools of thought on this. I do see what you are getting at....if you follow a strict gluten-free diet then all antibody levels should come down to zero...am I correct? I hate to say this but that is not true. There is no Celiac panel in the US where zero is listed as the goal to achieve. There is also a normal range for all the other tests and that is not zero either. The normal ranges are what Celiacs aim for. If you get your antibody levels down into the normal range, you will not activate the disease. I hope I can make myself understood on this but the ONLY test where a low number is important is the blood test to see if you are following the diet well......the AGA IgA and AGA IgG. These tell you if you have been getting any gluten in your diet.

As far as my high ANA, RF, etc., there is the chance I could have other diseases that cause the high numbers and I am not yet having symptoms but it shows in my blood work. OR my Celiac is causing these numbers to be high. Many people follow a strict diet and still have high numbers for autoimmune testing on the ANA and RF tests. Autoimmune diseases are still not well understood by doctors and they make guesses at some point. I feel good so do not worry about them. It could also be that I have 4 autoimmune diseases so my levels will never come down to normal, no matter how strict I am with the diet.

My sjogren's is not terrible anymore but I still have to use eye drops to fight the dryness. I also drink much water. I know how you feel as it can cause you to be very uncomfortable. I highly doubt that you will show a zero on your antibody testing because you have Celiac AND Sjogren's. It just doesn't work that way.

I will always have sjogren's, celiac, and thyroid disease but I can make it much better if I follow and stay on a strict gluten-free diet....which I do. Maybe I will ask for a re-test on my levels as it has been awhile and maybe they have come down a bit but I never expect them to be zero. I'd be happy if I just got to normal!

Hope I have made myself clearer....if not, keep asking until I get it right.