The diet that reduced my symptoms

[Lulabelle]

My condition started many years ago when I was 11 or 12 and it began with very dry eyes, and especially photosensitivity.  Then around age 17 egg sensitivity, I would be bent over in pain after eating an egg.  About the same time, I began getting thick phlegm. I had abdominal cramps and diarrhea that began before I was 28.  At around age 40 dairy sensitivity and finally around 45 I had swollen parotid glands, dizzy spells, very dry mouth, super thirst, sleep disorder, and brain fog.

While I had been to doctors with my individual complaints, Neither I nor the doctors put the symptoms together.  I finally stumbled on a Celiac's Website where I first learned about Sjogren's Syndrome.  Until then I had never even heard of it. The weight that was lifted off my shoulders when I looked at all of the symptoms and could check off each and every one!  I wasn't crazy!  I know some who read this will appreciate how I felt.


I followed the path many of you followed seeking medical attention.  First was the disbelief from doctors that I even had the problem and finally after I insisted, the referrals to specialists occurred.  I had a lip biopsy but a salivary gland wasn't captured.  I learned there was no cure, no magic pill, no diet to follow so I quit going to doctors - it seemed pointless.  So back to the Celiac's Website.   I kept asking myself why does Celiac's come up at the same time as Sjogren's Syndrome so often when I web search?   I tried going gluten free and my symptoms did improve somewhat.   So I Googled more and more and then I found the answer:

A completely nicotine, caffeine, alcohol, grain and legume free diet.  No bread, pasta, cake, cookies, cereal, beans, barley, wine, beer, coffee, tea, etc.  I wasn't a smoker and I very rarely drink alcohol, which made me a bit better off than those who smoke and drink because both dehydrate your skin and brain and the rest of you too!

I found an author, Melissa Diane Smith, and her book "Going Against the Grain". Smith talks about delayed food allergies, unlike a peanut or other food allergy that requires immediate medical attention, these foods don't cause anaphylactic shock, they are more insidious because you don't realize they are harming you.

It took about two weeks for my symptoms to reduce.  My eyes stopped itching, my sleep improved, my lips stopped being so dry.  The funniest thing was being awakened from a dead sleep because I was drooling!  My sleep was improved, my brain fog lifted and I actually felt myself being more focused and able to function.  Because of the better sleep I was more energized.

What I did notice was my parotid glands went crazy and ached way more than usual at about the 10-14 day point, it's now stopped aching and my other bodily aches and pains started to lift as well.

What do I get to eat?  All manner of vegetables and fruit, I pretty much stick to fresh or some frozen.  I eat fresh meat, fish and dairy products.  Yes, I can now eat eggs and dairy without pain, bloating and diarrhea.  I avoid all processed foods such as lunch meats, frozen prepared dinners, sauces or condiments (unless I make the sauce myself from scratch) as all have lots of hidden grains.    Even vinegar and soy sauces have grains!

All of this "new discovery" happened very recently for me, in March 2008 after I had seen a rheumatologist who again told me there was no diet to follow.  His only advice was to ensure I used eye drops and kept up my impeccable dental regime.  My symptoms still exist although they are greatly reduced.  Only time will tell if I can reverse this problem eating in this fashion or if the damage is done already, perhaps I won't see continued improvement.  I think I will. It's been only 3 months compared to the 49 years I have been consuming grains and legumes.


As with all diets, please consult with a physician and/or dietitian before you make any dietary changes.  My research says it's a completely healthy way to eat, probably even more so because I'm eating so much more fresh food than I was before. 

My only credential in advocating this way of eating is my Sjogren's Syndrome and years of seeing doctors who couldn't help.

I wish you all health and happiness!

Comments?  Questions?

[Katybarstool]

Hi Lulabelle

Thank you for sharing your experiences.  I'm sure our members will find them very useful.  I don't think I could follow your diet though, as while I love most fruit and veg, the IBS that has plagued me for so long means that I have to restrict the amount of fruit and veg I eat.

I have always been intrested in diet. In fact, our middle son had multiple allergies as a child. I devoured the books by (if I remember rightly) Dr Richard MckArness - one was
]Not all  the mind, the other Chemical Victims.

Kathyx

[faithful]

Lulabell, thank you for sharing this info.  Like you I have seen a multitude of doctors, put on many prescriptions only to get sicker, weaker and loosing more and more wt.  All along I have felt something else is wrong. Even today I feel so sick and weak.  I have never had any allergies but I know my body isnt right.
My eyes burn with dryness though I have been on Restasis for almost a year now.  My lips and tongue always feel scorched.  My abdomen is bloated and I feel some type of moving around in it as if I were pregnant.  I'm not.  My head hurts constantly and hasnt let up for months. My ears and throat always feel so inflammed as if they were literally on fire. And I have to use an anti-anx. med just to sleep. 
I have prayed and prayed for an answer to all this sickness.  This is the second confirmation on diet affecting our bodies.  I just read the most amazing article on hidden food allergies and the sickness that can be caused by them.  Sure is going to be hard to change my diet though I am not a poor eater.  I eat a lot of fruit, a good amt of veggies, some meat yet I do have dairy and wheat in my diet. 
I am so tired of being sick that I am getting to that place where I am ready to make some drastic changes. 
Your info may be the very answer I have been seeking.
Here is the link to the very article I read.  THese chemicals and sensitivities can cause autoimmunity.
http://www.cbn.com/health/nutrition/DrLen_031207.aspx
I hope this can help others as well.
Faithful

[irish]

Lulabelle, It sounds like you are basically following a gluten free diet plus some added items. Celiac sprue diet or gluten free diet means no oats, rye, oats or barley. Some people have to avoid soybeans also. Also, many people with sprue will have sensitivity to the chemicals used in many processed items that don't contain gluten. Sort of have to learn what things do bother you.

I have read that when people with sprue eat gluten and irritate their intestines it takes up to 3 weeks for the colon to recover from this exposure. This makes sense regarding other food allergens also. Hope that you continue to do well. Also, my hubby has celiac sprue and has been on the diet since 1978. He has a lot of neuropathy in his legs, bone loss associated with the lactose intolerance. He is also very thin and never gains weight.

Celiac disease can be associated with many autoimmune diseases, but it seems that sjogrens and sprue like to hang out together. Hope you are doing well. Irish

[Linda196]

Hello Lulabelle, welcome to Sjogren's World.

Thanks for sharing your success story, I'm always fascinated by the ways our bodies can react with what we put in them, for good or bad, and the cascade effect it sets off.

I have heard many stories from many people about how eliminating a food or food group has helped them, and it delights me that each person has been persistant and sought out the things that caused them grief. The puzzling thing is that it's such a varied list! A lot of people, and some research, supports the "leaky gut/gluten intolerance" theory, but others have done much better by incorporating complex carbs including those with gluten, and eliminating any fresh (even organic) vegetables of the nightshade family. Some respond well to high protein, others to no dairy...the list goes on.

I think it is like any of the "immediate" allergies; different people have different "postponed" allergies and need different approaches. I have done the process of excluding each group, then any individual foods in a group that seemed to cause changes (there were no profound changes), and came to the realization that the only thing foods cause me to do is break out in fat! I can't say nothing I ingest has any effect on my system, because chocolate does trigger migraines for me, and I have had an allergic reaction to penicillin, but both were immediate.

I used to be thouroughly disgusted when I woke up with drool on my chin...I'd give anything to have it happen now!

[Heather Bell]

Hi
Irish - can you please expand on the bone problems due to lactose intolerance, I need to know more!

Lulabelle - You are what you eat, there is a lot of truth in that, but personally I prefer the studies that say that regular consumption of alcohol can cure autoimmune disease - no really - I am not making it up! and a glass of something sparkling does wonders for me.

[irish]

Heather, When you have celiac sprue your small intestines can get damaged and your ability to absorb the nutrients from the food is hindered. My hubby was ill for a long time before they got him diagnosed so it is felt that he has some permanent damage to his small bowel.

Also, for some reason mwny people with celiac sprue also become lactose intolerant. When this happens and you can't eat the dairy products you cut down on your intake of calcium and have to take calcium supplement. My hubby will be 70 years old in July and and as near as we can assess he has had the sprue since he was 22 or so and he has been lactose intolerant for at least 30 years.

Between the calcium restriction and the sprue he isn't always absorbing the adequate amount of calcium. He has osteoporosis or bone loss because of the loss of calcium. He is very active so we know that he is doing well with the type of thing that will keep bones strong. He is also a smoker and that causes bone loss also.

Any time there is bone loss you become at high risk for fractures. That does not mean that you will have a fracture, but it means that one needs to take the calcium supplements and get the physical exercise. Any type of exercise that makes a person bear weight on there legs etc increases the strength of bones and this could happen also when a person has osteoporosis.

My hubby also has had leg pain for many years and we think that some of it is neuropathy and it is possible that some of it could be from the bone loss. If you are having problems that make you think you are losing calcium you need to be checked by a doc. It helps to be assessed as the doc can tell if you are losing the calcium for one specific medical reason. Talk with you doc about this. They can also check the blood calcium and that helps them determine the presence of disease. Good luck. Irish

[Sjenny]

Researchers are finding some patients with Hashimoto's thyroiditis have celiac disease and  believe the undiagnosed celiac disease switches on some immunilogical mechanism they haven't identified yet.

Researchers were excited to find that thyroid antibodies will disappear after 3 to 6 months of a gluten-free diet in some patients, either preventing the development of hypothryoid symptoms or curing it later!

Sue

[irish]

Sue, That is interesting information about the celiac and hashimotos. In my case it is the low t-cells that set my immune system on the qwest to kill me off. It resulted in sjogrens, hashimotos, asthma, myasthenia gravis, bullous pemphigoid and who knows what else. My immunologist felt I also had other autoimmune diseases that were not identified.

Thankfully, the IVIG seems to be kicking in. My blood work was so bad that it is amazing that I have done as well over the years as I have. If I have celiac sprue it is fairly well controlled by the gluten free diet that I am cooking for my hubby as I pretty much follow it also. Irish

[Tamik]

You can get tested for food sensitivities - I am waiting my results! You may have to see a natural path for this though.  It was a blood test.  My functional medicine doc says that intestinal inflamaiton can trigger AI symptoms and food sensitivities can cause intestinal inflamation It may not be as drastic as leaving out all grains ...  I tested negative for Celiac -but am curious as to what foods I am sensitive too that I just don't know because they don't cause allergy syptoms that I notice.  Tami K