Week 15 Recap: Still Learning

Did you know that most Yoplait Lite yogurts contain aspartame? I had been so busy looking for “GLUTEN FREE” on the labels I failed to notice the aspartame listed in the ingredients. I don’t react every time to aspartame, but suspect I am more sensitive to it now, than in the past.

I think I accidentally glutened myself over Easter weekend… one of those things that in retrospect I ask myself “What was I thinking?” I used distilled white vinegar in a recipe and think that may have done it. As to whether vinegar is safe or not, is debatable.

According to Gluten Free: The Celiac Site:

“Distilled vinegar (or white vinegar) has been listed as unsafe for people with celiac disease by the major organizations in the United States, but not by organizations in any other countries. This position changed in 2001. The Gluten Intolerance Group® and the Celiac Disease Foundation now state that all vinegar (except malt vinegar) is safe for people with celiac disease to consume. The American Dietetic Association has also stated…that distilled vinegar is gluten free.”

While according to Celiac.com and the Celiac Sprue Association (CSA):

“Distilled vinegar, however, is still on the CSAs ‘Low Gluten Items to Avoid List.’ The CSA still maintains that distilled vinegar and alcohol are ‘questionable,’ even if there is no detectable gluten/gliadin in them, and even though the Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF) and the new guidelines from the American Dietetic Association (ADA) all include them on their safe lists . The CSA urges celiacs to ascertain the source of any questionable ingredients from their manufacturers.”

I may have been reacting to something else, such as Hershey’s Kisses, but it sure felt like a gluten stomach-ache! Do achy joints have anything to do with being glutened?

The results to my EGD (endoscopy) last week came in, and both biopsies of the stomach and small intestine were normal. Yay! The doctor did not expect to find anything relating to celiac due to the time I’ve spent gluten-free (three months now), but there was also no sign of GERD (gastroesophageal reflux disease). This does not mean I don’t have reflux, it just means it hasn’t advanced to the stage of disease—so I guess I have caught it early enough, which is a good thing!

Besides waking up in the wee hours of the morning every single day and not getting enough sleep, the week was not a bad week. In fact, my treadmill walks were the best ever, feeling almost completely normal! For the first time in about eight weeks, my heart was feeling stronger and stronger—almost as if it has healed. I hope that is the case.

ODD THINGS THIS WEEK:

• A little pain to the left of my sternum, off and on for a couple of days.
• Minor left subclavian pain, off and on all week.
• Tingling tongue, and upper lip, also!
• Strange hives on my knuckles during the week.
• Minor right subclavian pain for about three days.
• Weirds pangs under mandible again.
• Fluttery sensations in chest from time to time, particularly when not feeling well.

“Physical Therapy” totals for the week include 55 minutes of Pilates, 60 minutes of weight-bearing exercises, and 18.309 miles walked.

It is ironic that the more I learn about celiac disease and how my body reacts to gluten, the less I realize I know about celiac and my body!  I am still learning, but it is a good learning.  Because I can be somewhat stubborn and hard-headed, it may take a couple of times to get through my head, but getting through my head it is-- and hopefully sooner than later-- I will finally reach the "Level Two" step (Step 1 = Beginning self-management and Foundation; Step 2 = Intermediate self-management and Expansion; Step 3 = Advanced level self-management and Maintenance) (Celiac Sprue Assocation).

This second step of "rehabilitation" includes (CSA):

• Establishing an individual treatment plan
• Keeping a daily diary and recording all intake, amounts, and reactions
• Identifying and eliminating immune-response triggers
• Waiting 2-4 weeks before reintroducing new or questionable items.
• Expanding knowledge of CD/DH

 Just when I think I have reached Level Two, I end up back in Level One, still trying to figure it all out.  15 weeks and still learning...

Laryngopharnygeal Reflux (Silent Reflux)

I learned something new yesterday from one of the celiac support groups of which I am a member. There is something called Silent Reflux!

For several days, I had been experiencing something like acid reflux, but it seemed to get stuck inside my throat. It was a very uncomfortable feeling and made my glands and voice box feel swollen.

 I did a little research and came across a website at the MidWest Ear, Nose & Throat P.A. (MWEN&T) which names the problem as Laryngopharyngeal Reflux (LPR) and describes some of the symptoms as:

• Hoarseness
• A "lump" in the throat
• Trouble swallowing
• Chronic cough
• Too much throat mucus
• Heartburn

Here is how it happens:  For people who don't have this problem, the food they eat goes into the stomach where digestion begins and that is the end of the story. For those who do suffer from reflux, some of the food comes back up again. In LPR (Silent Reflux), not only do the stomach contents back up into the esophagus, that backflow (food and/or stomach acid) goes all the way back up “into the larynx (the voice box) or the pharynx (the throat)” (MWEN&T). It can happen at any time, even when no food has been ingested, which explains a lot for me. I couldn't figure out why-- if I hadn't eaten anything-- I was still having this problem!!

 Also, when I was originally diagnosed with GERD back in late October 2009 with my first couple visits to the ER, I couldn’t understand how it could be GERD because I had never been one to have acid reflux (at least as I understood it) and rarely had heartburn. And suddenly, these medical professionals were telling me I was experiencing acid reflux but it didn’t feel like any acid reflux!

I couldn't understand it. So I followed all the guidelines for GERD (no acidic foods, no laying down after eating for several hours, no drinking caffeinated beverages, avoided fatty and fried foods, sugary foods, chocolate) -- and it seemed to make no difference what I ate, or what time of day I ate.

According to the MidWest EN&T, “many people with LPR never have heartburn” (italics added) and because it is so “silent,” it can be difficult to diagnose. For people who have had it in the past without realizing it, we don’t feel the heartburn because the “acid does not have enough time to irritate the esophagus and cause heartburn” (MWEN&T).

On the other hand, if that backflow does end up all the way into the throat, apparently even more damage can be done because the throat and voice box are very sensitive to stomach acid and can even injure your lungs and cause difficulty breathing.  Damage can occur not only to the larynx but to the trachea, bronchi, and lungs (hmmm…. thinking chronic bronchitis, here).

“The lack of GERD symptoms can mean that silent reflux damage is quite advanced when it is finally diagnosed. Long-term silent reflux damage increases the risk of acid reflux complications” (Michael McGrath, “Silent Reflux, Esophageal Reflux and Symptoms") .

Many times over the years, I have had difficulty clearing my throat, and my voice was often hoarse, particularly if I had to lay down (whether on the table at the doctor’s office, the dental chair, or anywhere). MidWest EN&T also suggests that some people “have a problem with too much nose and throat drainage, that is, too much mucus or phlegm.” And yet another sign is a post-nasal drip (which I suddenly developed out of no where with no sign of sneezing or sinus trouble).

Did you know that studies "demonstrate that LPR patients are more likely to have reflux in an upright position whereas GERD patients are more likely to reflux in a supine position" (Postma and Halum, “Laryngeal and Pharyngeal complications of gastroesophageal reflux disease” GI Motility Online)? This might explain why I would experience this silent reflux while sitting up, watching TV or typing away on my computer.

Did you also know that it takes longer to treat and resolve LPR than GERD ?  LPR can take several months to heal, while GERD symptoms can improve rapidly (Postma and Halum). The bad news is that people with silent reflux have a greater chance of esophageal dysplasia (cellular changes in the esophagus) and cancer than those with regular GERD (for cancer to develop as a result of LPR, the LPR must be very severe and go untreated for many years. Source: MWEN&T). As well, esophageal damage by acid and pepsin exposure can be reversible, while your voice box and throat can be easily and irreversibly damaged (Postma and Halum).

Did you also know that symptoms of LPR can also include chest pain (McGrath)? Yep, have had that in my little line-up of symptoms, but I'm not saying that is the cause. According to McGrath, “Hoarseness is most common in the mornings, as lying down increases the chances of esophageal reflux.” I’ve had plenty of experience with that. McGrath also states that “if stomach acid reaches the salivary glands, the glands may flood the mouth with a sour, salty liquid called water brash.” Again, another new experience during my 4-day silent reflux also. I couldn’t figure out why my mouth was watering at weird random times.

Did you know that LPR and GERD are not treated in the same way? They need to be treated differently because the laryngeal mucosa is so much more easily damaged than esophageal mucosa. Postma and Halum say that “the esophagus can tolerate exposure of up to 50 episodes of reflux a day without injury” and that “as few as three isolated episodes of laryngeal acid/pepsin exposure per week have been shown to induce injury.” In a nutshell, GERD is easier to treat and responds to treatment, but successful treatment of LPR requires chronic therapy.

That might explain why the clinic orginally had me on the Prilosec (omeprazole, a PPI or proton-pump-inhibitor) twice a day rather than once daily (more commonly for GERD). For LPR, you would need “twice daily PPI coverage” and would need to take it 30 – 45 minutes before breakfast, and again before dinner.

I actually had stopped taking the Prilosec once I finally got the official diagnosis of celiac disease because it didn’t seem to matter whether I took it or not. However, I also found out later that I was not taking it properly (on an empty stomach, at least 30 minutes before eating). It wasn’t until recently that I felt the silent reflux (LPR) again and this time it lasted for several days. But at the time, I didn’t even know it was silent reflux—I just thought it was “reflux” and couldn’t figure out what the heck it was doing in my neck and getting stuck in my throat!!

Just for the record, I am not a pill person. Taking vitamins is bad enough, but at least I know they are all natural, and have no fillers or extra chemicals. Whereas, these medications—I would just as soon do without. Yet, according to Postma and Halen, I need to stay on it for at least 6 months, and if the inflammation is gone I can taper off and eventually discontinue the antireflux meds. According to Postma and Halen, “50% of LPR patients on twice-daily PPI therapy have symptomatic improvement at 2 months, and an additional 22% improve from 2 to 4 months after initiating therapy.”

Other treatments may be as simple as basic antacids like Mylanta and Maalox. MidWestEN&T recommend 1 tablespoon four times a day—basically, one after each meal and one before bedtime. In case you haven’t already noticed with my own personal story (and according MWEN&T), when you have LPR, changing habits and diets don’t always work. So stick to treatment.

What is the connection with celiac disease? According to Postma and Halum, “immunocompromised patients may mount little response with infectious laryngitis” and as such are more susceptible to infections. More chronic forms of LPR can be found in those with autoimmune diseases: “autoimmune diseases that produce laryngeal inflammation most commonly have coexistent systemic symptoms” (i.e. people with an autoimmune disease uaully have symptoms that affect multiple organs, systems, etc.) and if not treated properly, there is a greater rate of reoccurrence and complications.

According to Natural-Reflux-Cure.com, “digestive juices can get into the upper throat at night as with regular acid reflux or GERD, but more people with LPR have damage occur during the day than at night” --which explains my daytime symptoms completely.

The Natural-Reflux-Cure website lists the following as common possible symptoms of LPR:

• Asthma or asthma-like symptoms
• Bad breath that won’t go away
• Belching or burping
• Chronic Cough
• Difficulty singing or extended talking
• Dysphonia (changes with the voice)
• Ear pain
• Feeling of a lump or something stuck in the throat
• Hoarseness
• Laryngospasm (feeling like one can’t catch one’s breath)
• Post nasal drip
• Sore throat
• Throat clearing
• Trouble swallowing
• Weak voice
• Wheezing

So, how is your LPR or Silent Reflux? Are you minor, major, or life-threatening? If it is just an annoyance, than it is minor (like mine). If it is major, than your symptoms interfere with your social life and/or with work. Certainly, if it is life-threatening, then you have an “airway obstruction problem, severe pulmonary disease, or malignancy” (Postma and Halum).

How do they diagnose LPR? A throat exam is the first step in the diagnosis because your throat will likely look red and swollen. A couple nights ago, for example, my voice box felt so swollen I had to breathe through my mouth a few times, or scoot my jaw foreward (which I find myself doing a lot anyway because my jaw seems set too far back-- at least that was my reasoning for breathing better, anyway).

Tests for LPR include pH monitoring (or pH-metry) and a barium swallow in which you swallow a chalky liquid that can be seen on x-rays. It will reveal any narrowing or abnormalities in the throat or esophagus (MWEN&T). The pH-metry involves a 24-hour, over-night test (done at home) in which a tube is placed through your nose and stays in your throat to measure acid.

And believe it or not, LPR can occur in babies and children! It can cause throat and lung problems and even breathing problems in babies who seem to have a lot of phlegm of difficulty swallowing or nursing. I would have never guessed a baby could have acid reflux!

Personal conclusion: Sometimes I wonder if this is why I could never yell (my yells end in fits of coughing) or speak loudly (why I am always so ‘quiet’) or read aloud for long periods of time—my voice becomes weak and hoarse and I begin coughing or just lose my voice. When I was younger, doctors would just dismiss it and say “Oh, its probably just scar tissue from repeated bouts of strep throat.” I’m beginning to think I’ve had this LPR off and on, all my life.

Emulsifiers: Gluten-Free or Not?

As a self-confessed chocoholic, I am having a hard time finding convenient sources of chocolate that I can safely eat. I heard that Hershey’s Kisses were gluten-free and I munched on them freely during the Christmas holidays, but ended up sick almost the entire week. Whether it was actually the Kisses, I can’t be certain, but they are the only "questionable" candies I ate with consistency between Christmas and New Year’s.

Looking at the ingredients of Hershey’s Kisses, the only term that I could not find on any gluten-free "Safe List" was “emulsifier” and the more chocolate I looked at, the more emulsifiers I found. Could this be my particular problem with so-called gluten-free chocolates? I had to find out.

So what is an emulsifier in the first place? Well, to put it simply, when you mix water and oil together and shake it as hard as you can, you get little droplets of oil and water together, but sooner or later, once the shaking stops, the water and oil will begin to separate again.

To get a better picture, think of it like this: An emulsifier is shaped something like a lollipop with a round head and a thin tail. The head is water-loving, and the tail is oil-loving. It gets between the oil and water (the head holding onto the water and the tail holding onto the oil), and helps stabilize the mixture, the little droplets remain suspended—you get an emulsion.

“When an emulsifier is added to the system, the droplets remain dispersed, and a stable emulsion is obtained” (Emulisifiers.org).

The emulsifier also has “the ability to interact with other food ingredients. In this way, various functionalities can be obtained, for example, interaction with proteins or carbohydrates. The emulsifier may be an aerating agent, starch complexing agent and/or crystallization inhibitor” (Emulsifiers.org).

According to Jeanne Turner of Baking-Management.com: “Dried whole eggs help emulsify and strengthen sweet dough properties, such as in a cinnamon roll. Other emulsifiers have anti-staling properties.” Emulsifiers have a very positive role in foods because they also improve texture and aeration (think: Three Musketeers candy bar) and can even extend shelf life.

Emulsifiers are everywhere, and not just in food products. You will also find emulsifiers in soaps and detergents: how else is Dawn going to pull grease away from your dirty dishes and Tide going to pull stains out of your laundry?

OK, so what kinds of things are emulsifiers? Common emulsifiers include such ingredients as egg yolks, and lecithin (which is a type of fat found in eggs, soy, and other food products) and mono- and diglycerides (Hozey, Rachel, Ehow.com). Other examples include honey, mustard in which the mucilage surrounding the seed hull acts as the emulsifier (Wikipedia), as well as the locust bean gum (from carob beans), and gelling agents and thickeners, such as pectin (Food.gov.uk).

Tragacanth is one of the oldest known natural emulsifiers. Many sources, such as CSPI (Center for Science in the Public Interest) believe this can cause severe allergic reactions (Wilson, Lester, csaceliacs.org). Hydroxypropyl methylcellulose is a gum from a modified plant fiber used as an emulsifier (gluten-free) for thickening.

And what do emulsifiers have to do with gluten? According to csaceliacs.org, “Emulsifiers alter the surface properties of other ingredients they contact… and may contain gluten from grain.”

Emulsifiers are everywhere: ice cream, breads and other foods made with grain, soft drinks, chewing gum, mayonnaise, and creamy dressings (Hozey). They can also be found in vegetables, whether fresh, frozen, dried or canned “unless they contain thickening agents to evaluate” (Wilson). Additionally, “canned products may contain emulsifiers, preservatives, stabilizers, and food starch not defined by source" (Wilson).

As well, popular drinks contain emulsifiers and include “coffee, tea, chocolate made from cocoa, fruit juices, carbonated drinks and some nut and rice drinks. Instant or processed drinks without malt, additives, stabilizers, or emulsifiers added that must be evaluated” (Wilson). Some root beers are gluten-free, and some are not, so be sure to check.

Be sure to also check any medication you take. If you have a prescription, ask the pharmacist to call the manufacturer to make sure it is gluten-free. I warn you, not all pharmacists are happy to do this, but it is necessary for your health. I have had some pharmacists say “That is your job, not mine!” Other times, they just give a heavy sigh, and sometimes roll their eyes and sometimes do all three. Just be sure you do it during the day time because at night, there is no one for them to call and you are stuck. “All medications have fillers or dispersing agents, some of which may include wheat starch” (dietsite.com).

GI Care.com states that any of the following on food labels "usually means that a grain containing gluten has been used:"

• stabilizer
• starch (some starch, such as from corn, is okay)
• flavoring
• emulsifier
• hydrolyzed
• plant protein

Bottom line-- Are emulsifiers safe, or not?  Unless you are absolutely sure of the exact source, you might consider staying away from emulsifiers because they can be made from grains which contain gluten.

When it Doubt, Do Without!!

Week 2: G-Free Recap

Getting through the holidays completely gluten-free while still trying to figure out how to live g-free has proven very difficult. Though I am eating g-free to the best of my abilities, somehow something is still creeping into my diet that is not allowing me to return to that wonderful feeling those first five days I went completely g-free. I seem to have a chronic stomach-ache, a general feeling of malaise, and extreme fatigue.

I am sure that my fatigue is due in part to the fact that I wake up every night for hours before finally falling asleep shortly before dawn, only to get up an hour or so later. Yet I remember when I first went g-free, I had an amazing energy level for which even a sleepless night seemed of little consequence-- I still felt energetic!

Over the New Year's Eve weekend, the only foods I ate that I did not know for certain contained gluten were Tostitos chips and Sour Cream & Onion chips-- but I did read the ingredients and couldn't find anything off-limits to a g-free diet. Additionally, I grabbed a few Hershey's Kisses from time to time (which are supposed to be g-free). Those are the only foods I've eaten differently than the first five days I went g-free and felt great.

So this third week I will eliminate chocolate, and of course have not eaten chips since New Year's and won't again without knowing for certain that they are g-free. On top of that, I hope to find some answers to a couple of blood draws: my cholesterol (which was done three weeks ago) and hopefully the results to the tTG test which would indicate the presence of celiac disease. If I don't receive any news by Wednesday I will go ahead and call the clinic.

In the meantime, I deal with what feels like chronic fatigue syndrome on a daily basis. I wonder if this is yet another aspect of CD? And why is it taking so long for me to recover from a gluten diet?

Week 1: G-Free Recap

Well I'd like to say that I spent the entire last seven days completely g-free, but this has not been the case. Though I immediately went g-free after the tTG blood draw (for celiac disease) last Monday morning, it took several days before I actually felt my energy returning and the stomach aches begin to go away. I was experiencing many of the symptoms during the two months prior to diagnosing myself.

Just when I thought I was finally g-free again, Christmas Eve came and went. I knew I had a small amount of wheat for dinner on Christmas Eve, but thought it might not affect me so much and at worst might get a stomach ache for a day or so, but tolerable. Christmas Day came and went and I ate freely of the candies in my stocking, all of which I thought were gluten-free. As it turns out, either something was not g-free, or the effects of Christmas Eve were beginning to take its toll, because by Christmas night I was not feeling too well, and it lasted all weekend long.

I spent the weekend profoundly tired-- it was all I could do to get out of bed and move around. I didn't want to do anything else. I could have spent the entire weekend lying in bed watching TV-- I had no energy, and was experiencing CD-related heartburn, stomach aches, bloating, nausea, flushing sensations, tingling and numbness; you name it. I didn't know whether it was the candy, or if something I had prepared was not g-free, even though I prepared all the Christmas Day meals myself and was very careful about every ingredient. The more I thought about it, the more I realized it had to be something in the candy, specifically, the mini-peppermint patties (which I love!).

I swore off the candy and gave it all to my kids, and began to feel better within 24 hours. So it is my hope that Week 2 will be much more "normalized" in the world of g-free eating, and will diligently stay away from unknown gluten food sources to the best of my abilities. We are to go to a friend's house this coming weekend, and I hope to be as gracious as can be in declining any food treats, if necessary!

Still trying to figure it out...

I have learned to tell the difference between a gluten-reaction stomach-ache and anything else. Today is definitely one of those gluten-reaction days, although I have not so far been able to pinpoint the source. I have been experiencing overwhelming fatigue and ongoing stomach pain.

Sometimes I get a reaction fairly quick, and sometimes it can take up to two days before it appears. To the best of my knowledge, I ate completely g-free yesterday, which means today's reaction is likely a reaction from Christmas Eve.

Something else I have learned is that when these types of symptoms appear (stomach pain; nausea; flushing or tingling sensations), it is usually the tail-end of whatever I ate, and will pass-- hopefully sooner than later.

The only thing I can trace over the past couple of days that may have affected my digestive system is a small amount of whole wheat that I ate on Christmas Eve. Since then, I have also eaten a number of small Christmas candies (gluten-free) that may also be triggering some kind of reaction to another ingredient-- it is difficult to tell. What I have learned over these past few days is that when in doubt, skip it. It won't be worth the pain later.