Symptom Sleuthing

Sjogren's syndrome is an autoimmune syndrome that affects the moisture producing glands, and can affect any system in the body. Add to that Fibromyalgia, Hashimoto's thyroiditis, lactose and gluten intolerance, and you get (or I should say, I get) endless sources of symptoms. I like puzzles, so symptom sleuthing is right up my alley. Warning: this blog post mentions bodily functions.
The gluten intolerance I discovered a couple of years ago when I tried a gluten free diet to see if it would help my Sjogren's symptoms. I had read that people with autoimmune issues often do better on gluten free diets. It did nothing for my pain or fatigue (darn it!), but my out-of-control acid reflux disappeared.
The lactose intolerance I discovered years ago when I started having really stinky gas, but only on weekdays. I figured out it was the milk I was putting on my cereal for breakfast. On weekends, I tended to have bagels or toast, with no milk. I started using a lactase pill that I took each time I ate dairy products. That solved the problem.
Later I found a capsule from a company called Digestive Advantage that I could take once a day, and eat dairy any time I wanted. Digestive Advantage has several products, for lactose defense, for intensive bowel support, for constipation and for gas defense. These products all have a natural probiotic and enzymes or other natural ingredients. They also have probiotic products. These are good products when used properly (read below). Give one a try.
A few weeks back, I looked at the ingredients of the different products, and thought that I read the same ingredients of the lactose defense version on the gas defense version, plus other ingredients. Why not get the extra benefits? I thought. I started using the gas defense version 3 weeks ago. Last week, I started having that stinky gas again, despite using the Digestive Advantage capsule daily. I figured my body was getting more sensitive to dairy.
I started to use the lactase pills again each time I ate dairy, and started looking for dairy substitutes. I tried almond milk yogurt, and coconut milk yogurt, despite having issues with coconut in the past. The almond milk was fine. The coconut milk caused, shall we say, worse problems than the regular milk. So I'm thinking I will use the lactase pills to finish off the dairy products I already bought, then go dairy free.
Kapow! My Symptom Sleuthing Mechanism kicks in. Hey! Didn't I switch from the lactose defense formula to the gas defense formula right before this started? I went on line to the Digestive Advantage website, and checked the ingredients of the two products. Aha! Only the Lactose defense one contains lactase enzyme, which is what helps digest dairy! It was not a problem with my digestive system, it was a problem with my eyes, and reading the boxes properly. Good thing I am a symptom sleuth, and was able to figure this out, or I might have given up dairy for the rest of my life for no good reason.
As you can see, symptom sleuthing is not just about what you ate, but about many other factors. In doing your own sleuthing when a new symptom arises, you might want to start keeping a journal of when, what, how, where, etc. the symptom occurs. Anything you ate in the day or so prior, any changes in anything in your life in the past week(s): deodorant, shampoo, laundry detergent, any new food, any new place you went, new clothing, carpet. Even a different brand of generic medication can set off an allergic reaction if you are sensitive to one of its ingredients.

Bee Venom and Gluten Cutter:Updates

A few weeks ago, I got stung six times by yellowjackets. The rest of that day it felt like they continued to sting me. The next day was less painful, but then the itching began. It was like five mosquito's intensity, in patches from about one inch to about two inches in diameter. The itching took most of a week before it began to subside, and though they no longer itch, the patches are still visible.
The week it happened, I wrote about the use of bee venom as a therapy for inflammation, pain, and other issues. At the time, my 30-ish year old hip bursitis and long-standing pain along my IT band in my left leg were gone. On the seventh day, God rested (oh, wait, wrong story). On the seventh day, there were twinges in my bursa, and by the twelfth day, my leg was back to its usual self.
That was wonderful week without one of my main sources of ongoing pain. On the other hand, The itching caused its own form of discomfort. I am still unsure if I would be willing to get bee venom therapy, but I am now thinking of looking into it, whether it is available near home, how much it costs, does insurance cover it, etc. I would not get it on my arms, where the itching was the worst, maybe on my back, where it wasn't as bad. Maybe. Just maybe.
On another topic, I discovered a new product a month ago, Gluten Cutter. I tried it, and it worked, so I used it to pigged out on gluten on a vacation. (Wrote about it here.)  Since being home, I eat less gluten, so I am using it less. Sometimes now, I get a stomach ache/acid reflux either that day or the next, symptoms I used to get from gluten. I have been experimenting with taking two Gluten Cutter capsules, and also with trying other products on the market. I am also limiting myself to 1-2 gluten items per week. Apparently, I can eat some gluten, if I am careful, I just haven't found the magic threshold yet. If you do try Gluten Cutter or another product, leave a comment. I'd like to know how it works for you.      

Gluten Capsules Work for Me

I walked into my local drug store last week and found not one, but TWO brands of capsules to help people with celiac or gluten intolerance digest gluten.They are Gluten Cutter, from Healthy Digestives, and, surprisingly, Glutenaid, which is the store brand (CVS). They were both the same price, $12.99 for 30 pills, to be taken 1-2 as needed when eating gluten. I am not going to get involved with the science of gluten digestion. Basically, gluten is a protein, people with celiac or gluten intolerance are missing or have deficient enzymes needed to digest it. These capsules provide the needed enzymes. These two products have slightly different active ingredients, but are very similar.Gluten Cutter also contains lactase, the enzyme needed to digest dairy products.
I asked the pharmacist what she thought or the two pruducts. She looked at the ingredients, and said, "They both have the enzymes needed to digest gluten, they should both work. Its the same idea as the lactase pills people take to help them digest milk products." I had been skeptical before, but I have been a fan of those lactase pills for years. This put the gluten capsules in a new light for me. Since they were both the same price, I decided to try the brand name, Gluten Cutter.
I don't have celiac, but I generally get a bad stomach ache about an hour after eating gluten.I left the next day for a wedding in California. On the plane, I popped a capsule, and ate a bag of Cheese Nips. NO STOMACH ACHE! During the vacation, I kind of went hog wild (how's that for a description of a good Jewish girl?) I had a hamburger on a bun, bread, and on one day, I had pasta for lunch and pizza for dinner. No stomach ache the whole time!
Now that I am home, I plan to be more sensible. I will go back to eating mostly gluten 'lite' (I eat foods made with regular soy sauce, which has some wheat in it, etc, but I otherwise avoid gluten.) I know I can have some gluten on occasion, without getting sick, as long as I take the capsule with it. Part of me wants to just go back to eating anything, and take the capsules whenever I eat gluten, but I am hesitant. I know that for people with celiac, gluten actually causes damage in their small intestine. I have gluten intolerance, I don't know if gluten causes any damage for me or not, and if it does, I don't know if the capsule stops the damage.Also, a gluten-free diet is supposed to be good for people with auto-immunity. I don't know if these capsules affect that or not.
Most of the reviews I read for these two products, and for a third product,GlutenEase, by Enzymedica, are positive. A few people said the product they tried did not work for them, but it did work for the majority. My suggestion is to give it a try if you are gluten intolerant. Talk to your doctor first if you think that would be the wise thing to do in your situation, especially if you have celiac. I don't know if these capsules control the aspect of gluten that is damaging in celiac.
For those of us who are helped by these capsules,just knowing we can have gluten sometimes makes being gluten free easier.   Do a search online of recent research, and print some out to show your doctor, if you think it would help. Start small, just a snack. Good luck and good eating.
   

Gluten Free Passover

Passover started last night. This is my first Passover gluten free. In some ways it is easier to be gluten free during Passover, in other ways, more complex. Gluten is found in wheat, rye and barley, and in the derivatives of these grains. During Passover, we are commanded to avoid 'hametz', which can be made from wheat, rye, barley, spelt and oats. Notice any similarities?

Matza, the 'bread of affliction', which is the main starch eaten during Passover, is made from wheat, so obviously matza is a no no. Matza is just wheat and water, baked quickly so that the dough has no time to ferment (that is how hametz develops). This is reminiscent of the Israelites baking their bread on their backs as they fled Pharaoh and Egypt. Flour used to make matza balls and many baked goods for Passover is made from ground up matzas, so that is also out for me.   Just as wheat flour is found in many items you would not suspect of having flour in them, matza meal is found in many products.

But there is a commandment to eat matza at one point during the Seder, the festive, highly ritualized meal that begins the week long Passover. The answer? Pikuach nefesh, an over-riding commandment to save a life. Since eating matza would make me sick, I am excused from the commandment to eat it. There is gluten free matza available, but my local stores do not carry it, and I did not order any. One reason is that I am not a big fan of matza in the first place, so it is no great loss that I can't eat it. I did buy a small box of gluten free matza crackers, which are not really Kosher for Passover because they have a leavening agent in them. I am not very strict about following the commandments, so they will be fine for me to use.

We are commanded to feel as if we, ourselves, were brought out of slavery. In the past, I 'slavishly' followed family customs of what to eat. Now I have to think more, to plan more. I have the freedom to choose from a variety of options that are both gluten free and kosher for Passover. Becoming gluten free has shown me a whole world of flours I did not know existed: almond flour, garbanzo bean flour, and flours made from tapioca and amaranth are just a few of the multitude that I have found. Some of these flours are acceptable to use during Passover.

I like to cook, and this experience is opening up new avenues of creativity for me. Some things I took for granted that I could buy off the shelf I can no longer eat because they have matza meal in them. I can make my own, using my usual cooking method of looking at several recipes then making up my own. I can experiment, jotting down notes, so I know what worked and what needs tweaking. I am cooking things I never thought to cook before, like gefilte fish (a traditional Jewish food made from fish that is similar to a meatball, but is eaten cold with horseradish). It came out okay, I have some ideas of how to make it better next time.

They say that necessity is the mother of invention. Food is a necessity, so I am inventing.

Gluten-Free Versus Gluten-Lite, Take 2

About three weeks ago, I wrote about my plan to try eating gluten free for a month and then eat gluten to see how it affected me.  I was tested for celiac and it was negative, but I have heard that even without celiac, a gluten free diet can be helpful for people with Sjogren’s Syndrome, Fibromyalgia and hypothyroid, three of the ‘challenges’ I live with.  So the results are in -sort of.  

One thing I noticed is that I have gone from using 2 prescription-strength Pepcids a day, and still having problems with acid and reflux, to using only one Pepcid a day, with few problems.   

On Friday, one of my husband’s patients (he is a psychologist) brought him some homemade chicken noodle soup.  I decided that, since I had gone 4 weeks without gluten, this was as good a time as any to put my system to the test.  How ironic that I was having chicken soup, usually thought of as a cure-all, to see if it would make me sick.  **A note to my husband’s patient- This is not a comment on your cooking.  The soup was delicious.  The test was how my body would react to the gluten in the noodles.  And react it did.

We ate the soup with English muffins for dinner. Within a half an hour, I developed a stomach ache.  It was gone in the morning, but came back when I ate half of a bagel for breakfast.  I had half of a sandwich on rye bread for lunch, the stomach ache continued.  ENOUGH!  My body shouted.

In my previous post, I speculated on whether I would need a strict gluten free diet, like a person with celiac disease needs, or, since I do not have celiac, would a ‘gluten lite’ diet suffice?  True confession:  the diet I followed this past week was not completely strict.  I did not eat anything with blatant gluten ingredients, but I did eat a few things that were labeled ‘packaged in a facility that also packages wheat’, so there may have been some contamination.  I also ate oatmeal for breakfast most days.  Oats, themselves don’t have gluten, but they are sometimes grown in fields that alternate with wheat, so may have some contamination.

My next experiment will be whether my body can handle small amounts of gluten.  Yesterday, we ate at Cracker Barrel, a favorite restaurant of mine.  I asked them about gluten free foods, they said that they don’t claim that any of their menu is gluten free.  I chose items that are less likely to have gluten:  grilled trout, corn, hash brown casserole and coleslaw.  I did not ask for my food to be cooked separately, as a strict gluten free person would require, and I even ate a half of a corn muffin, which was made with some wheat flour.  I did fine.

My plan is to eat mostly gluten free, any products which are primarily grain, such as bread and pasta, I will stick with gluten free. But I will allow myself to use products with a small amount of gluten, such as my favorite mustard. Someday, I may try a strict gluten free diet, to see if it helps me even more, but for now, I am going to stick with ‘gluten lite’. That is the best of both worlds (at least for me).

Gluten Free Versus Gluten Lite

My oldest son has a girlfriend who has celiac, as do several of her relatives. She has one aunt who likely has it, but she does not want to get tested. Perhaps she believes that as long as she doesn’t get tested, she doesn’t have it. More likely, she suspects she does have it, but as long as she doesn’t get it confirmed, she doesn’t have to follow the gluten free diet. If she does have celiac, this diet would help her feel physically better, but would make eating more complicated, especially when it comes to eating out or in social settings. I can sort of understand that thinking, but not really.


I have been tested for celiac, and I was negative. I have heard from various sources that people with Sjogren’s Syndrome do better on a gluten free diet, as do people with Fibromyalgia. I heard recently that people with hypothyroid also do better on gluten free diets. Since I have all three of these, I decided to try out being gluten free, and see how I do.

I have been ‘gluten lite’ for about two weeks, and planned to go gluten free this week. I changed my mind, and have continued the gluten lite diet for another week, and will go ‘all the way’ next week. This week there are too many complicating factors. The first one was a pot luck gathering with people from my temple on Christmas day. I know that there will be pot lucks in the future that I will have to navigate gluten wise, but since I am doing this as an experiment, rather than knowing for a fact that I will be helped by this diet, why make it harder for myself to adhere? The other complicating factor is my current situation: vacation for a week at our cabin, with our two sons (one is in college, the other in grad school.  Having all four of us together is a special event these days.)

At the pot luck, I had some soup with pasta in it, taking the pasta out, and I ate a piece of pecan pie, eating the filling but not the crust. Both of these I consider gluten lite, because I didn't actually eat the gluten-containing parts, but the food is contaminated if it comes in contact with gluten. Here at the cabin, I have been more stringent, but still not quite gluten free. I have my own bread, made gluten free pancakes when they had regular pancakes, and have been reading labels to avoid using products with gluten in them.  I did have a piece of cheesecake and ate the crust.

So the question is, since I don’t have celiac, the most common reason people eat a gluten free diet, how gluten free do I need to be? I know that for people with celiac, even a crumb of gluten-containing bread can throw their system off and make them symptomatic. Is that true for people who don’t have celiac as well? Or is ‘gluten lite’, as I have been eating this week, close enough? My plan is to go gluten free for two or three weeks, then eat something with a substantial amount of gluten in it, and see if it causes any problems for me. If it does, I will go back on the gluten free diet for a few weeks, and then try eating a small amount of gluten, and see how I do.

This has been a learning experience for me, and for my husband as well.  We were at a cafe the other day, and I was asking questions about the ingredients in something I was thinkin of ordering, and my husband got impatient.  If it turns out that being gluten free helps me, that is one of many changes he and I will have to get used to. I will let you know how my experimenting turns out.  I will also have more info about gluten and following a gluten free diet in a future post.