Tuesday, February 2, 2010

Troublesome Sjogren's Tongue

Yesterday, Annie asked a really good question:
I was wondering if you or any of your readers experience problems with food, in the sense that eating sugar or salt burns your tongue and stomach.I've been trying to find out if I have more food intolerances or it's due to the reaction of certain foods on my tongue that changes the way I taste the food. Foods with acidity (i.e. citrus, tomatoes etc.) also cause the same problems, including swollen glands. My reumatologist says maybe, but doesn't explain further, and the dietician did not seem to have much information on what foods to eat/avoid in sjogren's.
Sjogren's is definitely more than just "dry eyes and mouth", isn't it?

I too have had changes in the way that my body responds to food since I became a member of the Sjoggie club. One of my first symptoms was a marked decrease in my sense of smell and taste. As time went by, I also noticed that even though my sense of taste was diminished to certain flavors, my tongue became more sensitive to others - such as salt, spicy, and acids. Foods with these elements definitely cause my tongue to react painfully, depending on how strong these flavors are. During times when my mouth is especially dry, the pain is more intense.

It is fairly common for those with autoimmune disease to have an increase in food intolerances. I don't tolerate eating foods with wheat in them, and after an exam from my GI doctor, found that although I don't have an actual allergy to wheat, (celiac disease), I have developed irritable bowl syndrome.

You can read an excellent online resource that describes this and many other aspects of Sjogren's syndrome here, in an online book by Dr. Joop P. van der Merwe. If you scroll down, chapter 9 offers a very in-depth discussion of digestive issues related to Sjogren's syndrome.

adorable child's image by vancity197


annie said...

Thank you, Julia. I knew you would have resources to help. I have bookmarked this on-line book, and I will certainly read this as it seems to have a wealth of information for us sjogies. Why is there so little on Sjogren's, and why is that even the doctors and others in health care seem to have a limited amount of useful, in-depth information to dispense for the patients?
I am so grateful to have found your blog, you have helped me tremendously these past few months. BTW, I noticed your new blog and read about Sister Mary Martha, who seems to be a real hoot, and reminds me so much about the nuns in my high school days...very strict disciplinarians, but very knowledgeable teachers, who would on occasion show you little glimpses of their human side. Miss them!!!

Anonymous said...

Great article, thank you ! I will read it carefully I'm sure it will help me too.

What I have noticed is that I can't eat too much, a "normal" meal is too much for me and irriate my stomach, so I take more little meal and snack in the day.

Anonymous said...

hellooo hellooo, calling from England and cannot so far be heard! I'm really trying to connect with other sufferers who do not want to remain doom and gloom.[julia's blog is the BEST and has completely kept me going above all else].My tongue will swell up like an enormous balloon every month for about a week, and i am sure it is a food, but which one, who can tell? And when i am thus, i cannot cook at all as i have no idea what is going on, smell, taste ,texture- everything is a disaster.A week later, i will wonder what the hell THAT was all about. Does anyone else relate to this? x

annie said...

To the person from England...I can relate to the swollen tongue. At one point, I was sure I had some severe allergies to foods, and after visiting the ER 5X in a matter of months because of swollen throat,tongue and severe breathing problems and dizziness, I finally visited my naturopath because no doctor found anything wrong with me. She put me on a very restricted diet... only extra virgin olive oil, no dairy, grains,eliminated most vegetables and fruits etc. We seem to do well on a bland diet. I miss regular foods that I grew up eating.I find I, personally, am not eating well as I do not have a variety of foods to choose from, and have a hard time finding a snack to eat. I've read that sjogies should keep away from acidic foods,dairy,grains and nuts, caffeine,chocolate and alcohol (to name a few). The dietician suggested keeping to a gluten-free diet and keeping away from foods that have seeds in them. What are we left with to eat? Also, I think we have a problem with motility and should not have big meals that are difficult to digest, but have smaller meals throughout the day. Am I correct in this, or there some people out there able to eat anything they want and have no trouble?