Week 16 Recap: Celiac or Gluten Intolerant?

Well, it’s here! Summer has unofficially arrived in Montana after our usual 7 months of winter followed by 8 hours of spring. We may get hail storms from time to time through the summer, but I don’t expect any more snow until this fall. Yet, you know what they say in Montana, never say never!

On to last week’s recap in my adventures of going gluten free…

I am actually still in the process of determining whether I even have celiac disease or not. We are in the final throes of testing—the genetic screen has been sent to California to determine whether I have the gene for celiac or not. The results should arrive later this week. All other tests and biopsies at this point in time are normal.

My follow-up with the GI specialist went very well. My blood pressure was 102/80 and my pulse was 76. I am not IgA deficient, so that is nice to know. There was no sign of cancer or any disease in my stomach and small intestine—only a small 3 mm hiatal hernia. She recommended that I stop taking Prilosec (omeprazole) in the evenings, and take it only in the mornings, half hour before breakfast. After a month or two, I am to reduce the Prilosec to every other day for a month or two, and then eventually stop taking it altogether. Additionally, the GI specialist also wants me to see a dermatologist for the DH (dermatitis herpetiformis) once the results of the genetic screen for celiac comes in.

ODD THINGS THIS WEEK:

• Some twitching and slight thumping in chest, followed by slight pain to left of sternum as well as left subclavian and achy left arm.
• Very slight fluttering in chest several different times this week
• One morning, while eating my morning yogurt, my tongue started tingling. Not long after, my hands were feeling numb and flushed.
• Late in the week I experienced a painful double heart palpitation which caused me to cough, while sitting on my bed working on my laptop.

My “physical therapy” went very well this past week even though I was not able to spend as much time with Pilates as I normally do. All my treadmill walks (two daily 30-minute walks, 6 days a week) went very well and I did not feel stressed or tired, or pain in any way… pretty much normal walks. Exercise totals for the week include 60 minutes of Pilates, 30 minutes of weight-bearing exercises, and 18.66 miles walked.

Though I can only speculate what my serology results and biopsies would have shown three or four months ago when I first suspected celiac disease, my current lab results are all completely within the normal range for everything.

The following quotes I found in the Winter 2009 edition of the online “Easy Eats” magazine (“Easy Eats: The magazine for gluten-free living”), and thought they were especially pertinent in my particular case:

“Celiac disease patients with lesser degrees of villous atrophy are less likely to have positive celiac serologies” (“Digestive Disturbances and Science,” 2004).

"Recent literature data showed that serology (not only EMA, but also anti-tTG) seems to be ineffective in detecting most patients affected by subclinical/silent disease" -- i.e., gluten sensitivity rather than celiac disease ("Digestive and Liver Disease," 2007).

"If eliminating gluten from your diet results in your body feeling better, that is a positive test" (Dr. Vikki Peterson, DC, CCN, Founder of HealthNOW Medical Center, 2009).

Whatever the case—celiac or gluten intolerant—the treatment remains the same. The next question will be: is gluten intolerance inherited (should my kids be worried)?

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...

Week 12 Recap: What Recap?

Recap, recap, what is there to recap?  The new "Symptom of the Week"?

What can I say to spice things up a bit?  Basically, the congestion in my chest has shifted up to my neck. I was hoping to find some answers this week with the scheduled MRI, but it never happened. The most frequent “new symptom” was feeling like I had the mumps on the left side: numb below the ear and an achy jaw, every single day.

I did have some good news this past week: the heart palpitations have calmed down considerably; and the other good news (though not such good news for my kids) -- my kids all got sick, but I didn’t —which is the first time in a long time. This could be the result of one of two scenarios: (1) my immune system is finally kicking in, or (2) they all had the swine flu for which I was inoculated late last fall. I’m putting my money on the stronger immune system.

I found a little bit of a pattern in the heart palpitations recently. It seems as though when my oxygen supply either runs short or gets backed up by a kink in the neck (just my guess) I end up with a palpitation—such as when craning my neck to see something, or when talking for a long enough period of time that I need to take a breath.

During the week, I continued to wean myself off of clonazepam (again) by taking smaller and smaller doses. I found this helps avoid the inevitable headaches and sleepless night when I stop suddenly.

I also continued my physical therapy, comprised of two 30-minute treadmill walks, 20 minutes of Pilates, and 10 minutes of weight-bearing exercises, for six days a week, though I did miss one or two Pilates sessions. I kept my treadmill walks slow so as to determine whether I could do it without any heart palpitations, and the results were pretty good —I felt only one palpitation during a treadmill walk all week. The only thing I had to deal with was some upper chest constriction (as if my lungs refused to fully inflate) and some chronic neck congestion, almost entirely on the left side.

Last week's total physical therapy consisted of: 80 minutes of Pilates, 50 minutes of weight-bearing exercises, and walking 17.19 miles.

ODD EVENTS DURING THE WEEK:

• On one day, I ended up with a sudden bout of nausea and a weird feeling on the left side of my head. When I barely touched my head above my left ear, I felt pain sensations shoot out and upward.
• Another day I experienced some minor ringing in my left ear.
• Occasionally, my neck would throb in various areas, sometimes on the right side, but mostly on the left.
• My throat felt itchy and sore, and the right glands felt swollen.
• At least twice that week I awoke to a bloody taste in my mouth, and a lot of left-sided head and neck pain.
• One day I went to use my earbuds while on my treadmill but the left one kept shocking me for some reason, and created an earache in that ear.  Decided to opt out of using earbuds while on the treadmill.

On the day that I was scheduled for the head/neck MRI, the hospital ran a CT scan first to determine the nature of the prosthetic in my right ear (having had a stapedectomy almost 20 years ago). Turns out, there was some kind of metal in the prosthesis, and the MRI could not be done. Now what? We faxed the University of Washington Medical Center for my records so we could get a brand and model number of the prosthesis, but the MRI would have to be rescheduled. I left feeling very disappointed because I still had no answers.

That very same day, I had a consultation with a GI specialist, who seemed rather perturbed that my doctor did not confirm my celiac disease with a small intestine biopsy. She accused him of making a lot of generalizations without confirming the disease, but also admitted he could be correct in the diagnosis. As for herself, she refused to call it celiac until something shows up in a biopsy (of which she said celiac likely won't show up now, having been g-free for three months), or I have the gene for it (which they will apparently do at the same time). So bottom line, I go in for an esophagogastroduodenoscopy (EGD) on March 31.

The EGD will look at my esophagus, stomach, and duodenum (first part of the small intestine) with an endoscope, which can also be used to biopsy different areas if necessary.  According to SurgeryEncylopedia.com, it can be used:

"to diagnose early-stage cancer and can frequently help determine whether a growth is benign or malignant. The doctor can obtain biopsies of inflamed or suspicious tissue for examination in the laboratory by a pathologist or cytologist. Cell scrapings can also be taken by introducing a small brush through the endoscope; this technique is especially helpful in diagnosing cancer or an infection."

At the same time, this procedure can be used for:

• removal of polyps and other noncancerous (benign) tissue growths
• stretching narrowed areas (strictures) in the esophagus
• stopping bleeding from ulcers or blood vessels
• removing foreign objects that have been swallowed, such as coins, pins, buttons, small nails, and similar items

With the EGD, the GI-specialist can look for things like: 

• causes of abdominal pain
• achalasia, a defect in the muscular opening between the esophagus and the stomach
• Barrett's esophagus, a precancerous condition of the cells lining the esophagus
• Crohn's disease and inflammatory disease of the small intestine
• esophageal cancer
• gastroesophageal reflux disease (GERD), a condition caused by excess stomach acid
• hiatal hernia
• irritable bowel syndrome
• rectal bleeding
• stomach cancer
• stomach ulcers
• swallowing problems

The only thing that worries me at this point is that I still have random heart palpitations and that we don't know what is going on in my head and neck.  An EGD is contraindicated in patients who are at risk for heart complications or stroke (NIH), and in my mind, as long as we still don't know why I get random heart palpitations or whether I actually  had a TIA or am at risk for a stroke (where was that MRI when I needed it?), there is some risk involved with the EGD.  It may be a low risk, but without answers, to me it is still a risk.  Better safe, than sorry, right?  But I guess we won't know until the actual procedure.

Till next time...

Week 10 Recap: Gluten Reactions?

People have warned me about reactions to gluten once you have been g-free for any length of time. I have been told that each accidental exposure seems to result in a different or worse reaction than before. If what I experienced last week was a result of an accidental exposure, I think I ran the gamut of every sick feeling I’ve ever had -- and all in less than five days.

The week started out great, well into the 90th-percentile for me. I continued my “physical therapy” with two 30-minute treadmill walks, upped my Pilates time to 30 minutes, and upped my weight-bearing exercises to 15 minutes. My plan was to do continue with a six-day exercise program.

I also decided that I didn’t want to continue using clonazepam to help me sleep anymore. I have never liked the idea of taking drugs that do anything to my brain, and I don't like the idea of having to be “weaned” off of medications, especially ones that might require additional medications to counter the side effects of weaning. Well, the idea was a good one but I ended up taking lorazepam instead (Ativan). It was a tiny dose and I figured it would be a good way to slow down. It worked— I slept through the entire night for the first time I can remember in a long time!

But by Tuesday I started having a lot of what I call “subclavian” pain (just because it is in the general area of the subclavian vein --below my shoulder). It was so pronounced I gave it a 5.5 on the pain scale: moderate pain. It was not the first time I have experienced pain or congestion in that same area, but it seemed pretty strong this time and the pain radiated from the left subclavian area toward my left armpit as well. It lasted off and on all day and I ended up taking lorazepam to help me sleep again.

By Wednesday, I wasn’t feeling very good. I was feeling flu-like and couldn’t seem to keep my heart rate down during my treadmill walks. At the same time I developed a migraine headache on the right side of my head that steadily worsened throughout the day. By bedtime I was feeling weak and shaky and my insides were “trembling” again. I was so uncomfortable I resorted to lorazepam again to help me sleep because it had worked so well the previous two nights. It didn’t occur to me that the lorazepam might contain gluten.

The next day I continued to have trouble keeping my heart rate down during my treadmill walk and ended up reducing the speed and held on to the rails when I felt too winded. I also continued to battle the right-sided migraine as well as left chest pain that radiated upward into that left shoulder/subclavian area. The only good news was that my headache went away when I did my treadmill walks and suspected it was due to the increase in oxygen in my body. I determined not to take any more medications to help me sleep, and took Advil to dull the headache, instead.

As you can imagine, I didn’t sleep that night, and had to put up with internal muscle trembling which seemed to start in my esophagus at bedtime and worked its way all the way through to my intestines by morning. At least the headache went away! That Friday was the day I noticed the involuntary gasps which have happened several times over the past week or two, sometimes during the day, mostly at night, and for no apparent reason. The kind of involuntary gasps you experience while crying. Sometimes just a single one, sometimes 2 or 3 in quick succession; sometimes in the day time, but mostly at night. Chalked it up to just another one of those things, but wondered if it wasn’t somehow connected to everything else I was experiencing that week!!

Throughout most of Friday I was feeling very weak. Once again, I had a hard time keeping my heart rate down during the treadmill walk, sometimes exceeding 95% of my heart rate by several beats. I didn’t feel hungry, but forced myself to eat and ended up with a bad case of reflux all afternoon in spite of the twice daily omeprazole (Prilosec). It felt like the reflux was pressing against my lungs and chest, making my chest feet very full.

To ease the reflux and the bloating I was feeling, I took Mylanta twice that evening, but it didn’t do much good. I hardly slept again that night, and I felt intestinal trembling all night long, clear into dawn again—it was like I had a motor running that I couldn’t turn off.  (If you ever want to know how this trembling feels, stand in the shower and let the spray beat down on your chest.  That is how it feels, but from the inside.)

I spent most of Saturday morning feeling “weird and weak” like I either had low blood-sugar or low blood-pressure. My stomach felt hungry, but my brain didn’t. I weighed myself for the first time in I-don’t-know-how-many months (my only weight came from doctors' offices) and was at 108 lbs. That is probably the lowest I have been in 5 years, since the DH (dermatitis herpetiformis) first showed up. Though 108 is actually a good weight for me (between 105 and 110 is generally when I feel my best-- I am a small person), I am not trying to lose weight. If I was trying to lose weight and felt good, I wouldn’t care, but I don’t feel good, so I’m not sure that it’s such a good thing.

It took another night before all these weird symptoms even began to subside. I decided to skip the sixth day with Pilates and weight training and even came close to giving up the treadmill for that day, but somehow I managed to get it done, and that made me happy. My exercise totals for the week: 18.85 miles on the treadmill, 130 minutes with Pilates and 60 minutes in weight-training.

Overall, it was a rough week and I don’t want a repeat of this week any time soon— in fact, never again would be nice.

I believe I was having a reaction to gluten, though I do not know the source for sure. I know that I am very strict with my diet, and so I suspect it may be the lorazepam which was prescribed for me during one ER visit to help me get over the “hurdles.” Regardless, I won’t be taking it again!

Week 9 Recap: Weird Things

Week 9 was actually a good week—I didn’t feel completely healed by any means, but definitely on my way. Every day felt somewhere in the 90% range for me. What could make it better? More sleep, more energy, and more stamina—I think they are all related, aren’t they?

Some Weird things I experienced this past week:

• Random hives inside my elbows and knees that seemed to disappear as quickly as they appeared, and often only on the left side (there is that left side again!!).  
• Feeling weak, fluttery, and “weird” come about 8:30 or 9 in the evenings. I suspect it may have something to do with low blood sugar because that is the longest time of day I go without eating (don’t eat after dinner anymore). I ended up taking clonazepam every night that week when I went to bed to help me get past these odd, fluttery sensations. 
• I usually feel fine in motion, but when I have to stand still for any length of time (whether in the check-out line at the store, or cooking at the stove), I begin to feel queasy, light-headed, and like I’d really like to sit down. Maybe it is a blood pressure thing? I don’t know.

And yet another really weird thing that happened this past week happened on Monday afternoon. I experienced some sudden, stabbing pain in left shoulder (subclavian) area which made me a little nauseous and sweaty for a few seconds. I checked my food/symptom journal and found it was the first time I have felt pain or congestion in that area in about two weeks. It had been so long, I had almost forgotten about it!! That oh-so-common left shoulder/subclavian pain and congestion had disappeared completely during the time I was off of ergocalciferol (Vitamin D) and all forms of Vitamin D, about 10 days. In fact, now that I think of it, that is the only time it disappeared.—but I’m not saying they’re related. Yet, why did it go away, and why did it return so suddenly (the day after I restarted the ergocalciferol)?

Could the left shoulder/subclavian pain have anything to do with ordinary Vitamin D? Even before the ergocalciferol prescription, I was still taking Vitamin D3, 1000 IUs/day and still feeling that congestion. Maybe for some odd reason my body does not react well to any Vitamin D.  Either way, it is turning more into pain than congestion, these days.

Once I restarted the ergocalciferol, I didn’t notice any other adverse affects from the 50,000 IUs of Vitamin D like I had previously, so besides the pain in the left subclavian area, I suppose that is good news. If it bothers me, my doctor has instructed to reduce the dose to once a week, rather than twice a week. Let’s hope the left shoulder/subclavian congestion and pain doesn’t have anything to do with it.  On the other hand, if there is a link then I should be able to avoid that pain by stopping the D vitamins-- just have to get some more sunshine, I guess. 

Maybe I should invest in a tanning bed.  :)

I didn’t experience so much back pain this week like I did with the previous week, but I did wake up with head and neck pain (always the left side!) on five different mornings which is something I’d really like to take care of, but don’t know how—it doesn’t seem to be related to my pillow because I have also experienced it during the middle of the day, far from my pillow.

I continued my “physical therapy” all throughout the week: two 30-minute treadmill walks a day, increasing in mileage by small degrees every day. The photo here shows the exact model treadmill that I own, and it has probably saved my life more than once! But this week I still experienced that left shoulder/subclavian pain and congestion through at least one of the treadmill walks every day…. Regardless, I walked 18.39 miles this last week on that treadmill.

The other two parts of my “physical therapy” include strengthening my core muscles 20 minutes a day with Pilates (using a resistance band and the “wheel” as pictured here-- that's not me with the band), in addition to using the Pilates Power Gym for 10 minutes a day for weight-bearing exercises to strengthen my arms and legs.

This is the exact model of the Pilates Power Gym I purchased about 18 months ago when I knew I was slacking on exercise and wanted to get back into shape again. We used to keep it in front of the TV so that all of us could use it while watching TV.  It ended up being used mostly as an ottoman or footrest, so now it has been relegated to my room where I use it six days a week.

So Week 9 not only included 18.39 miles on the treadmill, but also 120 minutes with Pilates, and 90 minutes on the Pilates Power Gym. I’m not feeling any exercise highs or anything like that because it is hard work-- it is not fun.  For me, it is simply therapy. My goal is to get strong enough so that I can feel “normal” again— so that I can increase my strength and and gain some energy in the process. I hope it works!

Week 8 Recap: Nice Feelings

Though the week started off with some residual back pain, it wasn’t too bad a week. In fact, I found a name for one of the mysterious “symptoms” I’d been having off and on through most of my life: silent reflux (as explained in a previous post).

For four days I couldn’t figure out why I felt like reflux was going up into my neck and attaching itself to my voice box. I was also salivating more, and developed a post-nasal drip without any apparent reason. Someone in one of my celiac support groups mentioned that she had “silent reflux” and when I looked it up, there were all my symptoms!

Well, now that I understood what was bothering me, I tried to look back at what I had eaten during the past four days—because my diet was mostly a GERD diet anyway: no fatty/fried foods; no sugary foods; no chocolate; no caffeine; no acidic foods; no tight clothing; no laying down after eating, etc. The only thing I could find in my food journal (that’s right, I have learned to keep one) were about 3 or 4 Kettle chips (g-free, of course, and low-fat) every day during that time.

Obviously, my body wasn’t healed enough to handle those chips, yet! So I did the reasonable thing, and stopped eating the chips… I also learned that I should be taking the omegprazole (Prilosec), and so started that regimen up again during the middle of the week. Once I started the Prilosec, I have to say, my days began to improve: maybe it was coincidence, maybe not; maybe it was because I simply wasn't eating those chips-- even though they were in very small amounts.

Also during the week, I continued my exercise regimen of two 30-minute treadmill walks (six days a week); a 20-minute Pilates workout (five days a week); and 10 minutes of weight bearing exercises (using a Pilates machine, five days a week).

Each 30 minute treadmill walk started out with a 5-minute warm-up walk and ended with a 5-minute cool-down walk, and for those 20 minutes in between I tried to keep my heart rate as near my target heart rate (as suggested by my doctor) as possible. I started out the week walking 2.744 miles in a day, and ended the week walking 3.003 miles in a day. That is 17.35 miles total (of course, this does not count the daily run-around and errands throughout the day); 100 minutes of Pilates; and 50 minutes of weight-bearing exercises.  So I feel this week was very successful in strengthening my heart and my core muscles. The best part: almost no heart palpitations this week, and that is a great feeling!!

Also, this week marked the beginning of a new class which I must take or my financial aid will be revoked. I was supposed to take two classes this time, but because of my health, I postponed that double-up (my final two classes) until the next term. I have been lucky enough to keep my GPA high (3.98)—which may be as high as I can get it, thanks to one A- a few years ago. Amazing how one little A- can affect your GPA. Regardless, I will be graduating summa cum laude, and that is a nice feeling.

The only drawback to this week was that I had to resort to clonazepam almost every night to help me sleep through the bouts of silent reflux, or symptoms that feel like hypoglycemia. Yet, all in all, by the end of the week, my days were very good—and back in the 90% range, which is a very good feeling.