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 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.

Hypoglycemia, Celiac, Adrenal Cortical Insufficiency, and Addison’s Disease

I happened to run across a website the other day, that mentioned the “inner trembling” I often feel, particularly late at night when all else is quiet, about 5 or 6 hours after my last meal. The website lists three different types of hypoglycemia (low blood sugar), but the one that caught my eye was regarding Type 2 (Adrenergic Type):

“After ingestion of glucose the blood sugar rises for the first three hours followed by a hypoglycemic rebound at 4 to 6 hours. Symptoms associated with this type of response are tiredness 2 hours after eating, allergic responses or food intolerances, and shakiness before meals. When blood sugar falls rapidly, the early symptoms are those brought on by a compensating secretion of adrenalin; these include sweating, weakness, hunger, racing pulse and an ‘inner trembling’. This response can be due to adrenal cortical insufficiency or thyroid deficiency” (www.diagnose-me.com/cond/C18558.html).

Hmmmm….. I knew I didn’t have a thyroid problem because my thyroid test results were normal. However, this led me to think about the kidney problems I’d had over the last few months (the adrenals are on the kidneys) and did a little research on adrenal cortical insufficiency, and I found that adrenal cortical insufficiency can be caused by nutritional deficiencies (think: celiac disease and nutrient malsabsorption):

“People with mild adrenal insufficiency may suffer from the same symptoms as those with Addison's Disease. Symptoms can include headaches, muscular aches and pains, joint pains, confusion, impaired memory, low motivation, and many others. Additionally, such people may suffer from an increased susceptibility to all kinds of infections including those caused by bacteria, viruses, parasites, yeast, and fungi” (www.mbschachter.com/adrenal.htm).

This led me to yet another idea: What is Addison’s Disease?

According to the Mayo Clinic:

“Addison's disease is a disorder that results when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, your adrenal glands produce too little cortisol, and often insufficient levels of aldosterone as well. Also called adrenal insufficiency or hypocortisolism."

This piqued my interest even more because cortisol is the hormone that regulates stress and helps you to sleep. Being a lifelong insomniac, it made me want to know more. Though Addison’s disease can occur at any age, it “is most common in people ages 30 to 50” (Mayo Clinic).

Symptoms include:

• Muscle weakness and fatigue
• Weight loss and decreased appetite
• Darkening of your skin (hyperpigmentation)
• Low blood pressure, even fainting
• Salt craving
• Low blood sugar (hypoglycemia)
• Nausea, diarrhea or vomiting
• Muscle or joint pains
• Irritability
• Depression 

If you were to go into an Addisonian crisis, you would need immediate medical care because it is a sign of acute adrenal failure. It can be triggered by an infection or illness, or physical stress (Mayo Clinic). You might have:

• Pain in your lower back, abdomen or legs
• Severe vomiting and diarrhea, leading to dehydration
• Low blood pressure
• Loss of consciousness
• High potassium (hyperkalemia) (thoughts of my 2nd ER visit when a medical worker popped her head into the treatment room after they did a UA and asked if I was taking a potassium supplement – I was not.)

Have I lost you yet?

Going from Hypoglycemia to Adrenal insufficiency to Addison’s disease?

What is the connection?

Your adrenal glands have two parts: one that produces adrenaline-type hormones and one that produces corticosteroids such as glucocorticoids and mineralcorticoids. Cortisol is one of the glucocorticoids. According to the Mayo Clinic, glucocorticoids “influence your body's ability to convert food fuels into energy, play a role in your immune system's inflammatory response and help your body respond to stress” and the mineralcorticoids “maintain your body's balance of sodium and potassium and water to keep your blood pressure normal.”

What does any of that mean to me? The glucocorticoids play a part in my immune system’s ability to respond (why am I catching every "bug" that walks through the door?) and the mineracorticoids maintain my electrolytes (something I have questioned several times). It may be something, it may be nothing.

What does it have to do with celiac disease? According to the Mayo Clinic: “The failure of your adrenal glands to produce adrenocortical hormones is most commonly the result of the body attacking itself (autoimmune disease). For unknown reasons, your immune system views the adrenal cortex as foreign, something to attack and destroy.”

According to the Journal of Clinical Endocrinology & Metabolism, there is an increased rate of Addison’s Disease (AD) in celiac patients (Peter Elfström, Scott M. Montgomery, Olle Kämpe, Anders Ekbom and Jonas F. Ludvigsson. “Risk of Primary Adrenal Insufficiency in Patients with Celiac Disease” The Journal of Clinical Endocrinology & Metabolism Vol. 92, No. 9 3595-3598, Copyright © 2007 by The Endocrine Society). These authors believe that “there was a statistically significantly positive association between CD and subsequent AD” and they “suggest an increased awareness of AD in individuals with CD.”

What I’ve been talking about so far is primary adrenal insufficiency. I should also mention that there is also a secondary adrenal insufficiency in which your pituitary gland is having problems. In this case, there wouldn't be enough adrenocorticotropic hormone (ACTH), “which stimulates the adrenal cortex to produce its hormones” (Mayo Clinic).

How do we find out one way or the other? There are several tests, including a blood test to measure your sodium, potassium, cortisol and ACTH, and also for antibodies associated with Addison’s disease (AD). Other tests include ACTH stimulation test, and insulin-induced hypoglycemia test (according to the Mayo Clinic, after an injection of insulin, your glucose level should fall and cortisol level should rise). Additionally, a CT scan will reveal any abnormalities on your adrenals.

Treatment for AD would mean “taking hormones to replace the insufficient amounts being made by your adrenal glands, in order to mimic the beneficial effects those naturally made hormones would normally produce” (Mayo Clinic).

Personal conclusion? Perhaps the tremors/trembling I feel inside my body is related to an adrenergic type hypoglycemia which may have been caused by an adrenal insufficiency or even Addison’s disease, which is something that can be found in patients with celiac disease. Perhaps this why I have been getting sick so easily? Regardless, it is another hurdle that I must try to overcome, and something for which I will seek additional answers.