Is this reaction Histamine worthy?

How many of you remember the Sponge Worthy  episode from Jerry Seinfeld? The whole episode revolves around the discontinuance of the Contraceptive Sponge.  Elaine stockpiles cases of the “sponge”.  She goes to every pharmacy she can find to buy whatever is left. Then suddenly she is faced with the dilemma of whether or not her date is “sponge worthy”. Does she dare waste one of her precious sponges on him.

Recently I noticed that my vial of histamine was getting low.  I emailed an order for more. I was told that because it had been too long since I was actually seen in Dallas, I would have to return for a visit before I could get any more.   A visit to Dallas is not possible now. I am working on something else that may help me.  In the meantime, I have to decide whether or not a reaction is “histamine worthy”.  Do I try to ride out a reaction when I normally would have just given myself an injection and gone on about my day? OR Do I give myself an injection and hope I don’t have any reactions that will require histamine?

Just last week I had a reaction to someone’s cologne/perfume/whatever in my doctor’s waiting room. I went outside and was coughing and gagging so much that I disrupted the dentist in the office next door. He came outside to see if I was alright and to see if I needed any help. To my dismay I only had my inhaler and had completely forgotten to bring my histamine with me. By the time I got back into the office my usual BP of 112/70 was 149/90.  I was stuck letting myself ride out the reaction when it would have been so much nicer to have calmed my body down.

What types of situations have you been in where you have to decide if something is “sponge worthy/histamine worthy”?

Why No One Figured Out Food Was Making Me Sick

Allow me to introduce you to Amy.  Her story of food allergies and the journey to find out what was making her sick, is an interesting one.  Now, I will let Amy tell you for herself.

Five minutes. That’s all it took for golf ball-sized hail to destroy the four gorgeous pots of flowers I’d just set out on the patio. In two days our extended family was gathering for a dinner party to celebrate a wedding; I’d have to scurry to find more flowers. What a waste of time and money.

 

 

What I didn’t realize at the time was that the hail had also completely destroyed our roof along with many windows as well as the siding of our house. I’d be spending the entire summer dealing with the insurance company and contractors. Losing those flowers were small potatoes.

Sometimes we focus on the little things and entirely miss the big picture.

This is exactly what happened when I started getting sick in my thirties. The doctors focused on each of my symptoms—from vertigo to chronic pain– entirely missing the symptoms were all a part of the same illness.

The first doctor said my blood pressure was high and put me on meds. The second one told me my iron was low but brushed it off to a poor diet. Another doctor said the pain in my chest was GERD and prescribed meds. A dietitian told me I was malnourished and gave me a diet to follow. A gastroenterologist gave me meds for IBS. Another gastroenterologist told me to go eat fried foods and if I got sick, I most likely needed my gallbladder removed.  A gynecologist told me I needed a total hysterectomy.

Each time I got a diagnosis, I let out a sigh of relief.  At least it wasn’t cancer.

Still, something wasn’t adding up. After all these tests and procedures, followed by a hysterectomy and gall bladder surgery, my symptoms worsened. In fact, I became so exhausted I couldn’t get out of bed. Everything I ate made me run to the bathroom. I couldn’t remember what year it was, or how long I’d been married. Pain shot through my entire body. My legs caved when I walked up the stairs. My eyesight weakened, and I kept developing weird skin lesions. I itched all over.

I’d about given up when I saw an advertisement in our local paper for a food allergy blood test. Not one doctor had suggested food might be causing my symptoms—even though I now know reactions to food can cause all the symptoms I experienced.

When the blood test came back, I argued with the pharmacy that something must have gone wrong in the lab—I couldn’t possibly be allergic to that many foods!

So I went to a board-certified allergist for skin-prick testing. He confirmed I was allergic to myriad foods, including dairy, soy, eggs, corn, wheat, vanilla, nutmeg and asparagus.

I’d received negative results for celiac disease years earlier, but a new doctor ran a genetic test and confirmed celiac disease. Turns out I have both genes for celiac disease; either one parent has both genes, like me, or each carries one gene.  An endoscopy also revealed I have eosinophilic esophagitis, which explained why food often got stuck on the way down.

At first, I found it hard to believe food could make me so sick.  I was an adult—adults don’t develop food allergies! But as soon as I started eliminating certain foods, my health improved—immensely!

The prescribed painkillers for chronic pain and the antibiotics that followed all those procedures and surgeries in all likelihood contributed to a leaky gut and resulting food allergies and celiac disease. Certainly they didn’t help. Nor did the gluten-filled saltines I kept eating for an upset stomach!

I’ve learned a valuable lesson: Pay attention to the details, but look at the big picture. While each doctor had his or her theory for the cause of a symptom, my instinct was that all my symptoms were part of a bigger problem. I’ve since learned celiac disease can have over 300 symptoms!

 

 

It took some time, but the flowers I thought had been destroyed by the hail eventually grew back. They don’t look quite as pretty as when I brought them home, but they are getting stronger and healthier.

Just like me.

There’s Peanuts In That?

I have had a difficult time focusing on writing my blog posts.  I am not sure what is going on other than I am still grieving.  I have been watching many episodes of Diners, Drive-Ins, and Dives with my husband.  Despite all my food allergies, I still enjoy watching the cooking shows.  I keep thinking I might see something that looks so delicious I might want to spend hours in the kitchen trying to rework it to make it safe for me.  It doesn’t happen too often.  Quite frankly I get frustrated too easily.  And summertime does not exactly conjure up a longing to spend hours in the kitchen slaving over a steaming pot on the stove or in front of a hot oven.

A few nights ago Guy Fieri was at a restaurant where the chef was making Mole.  I have never had it.  In my non-food-allergic world I might give it a try.  Then the chef began tossing ingredients into the pan.  The first ingredient was peanuts (a definite no for me).  Then she added mushrooms (another no especially with my fungal infection).  This was followed with plaintains (anaphylactic to those) and avocado leaves (very allergic to avocados and I am sure the leaves wouldn’t be any safer than the avocados themselves).  I think there was alcohol in there as well.

So where am I going with all this?  Imagine you have a peanut allergy.  You go to a restaurant and by a dinner that has sauce.  Because peanuts are not mentioned anywhere in the description, you think you are safe.  Then WHAM, your throat swells shut!  We have to be so very careful!  Food allergens can be hidden in everything!

When was the last time you ate something you thought “was safe” and found out the hard way it wasn’t?

I Am An Author

Today I am excited to be hosted on the blog of D. E. Haggerty.  It still feels very strange to say, “I am an author”.  

It still feels strange when those words roll of my tongue! I never set out to be an author. As a child I didn’t dream of writing books like those I loved checking out from the library every week. I was going to be a nurse until I realized that being a nurse meant dealing with needles and blood. To read more of my blog post, visit D. E. Haggerty’s blog and read the rest of my guest post.  Please take a moment to leave a comment and thank her for hosting me.

 

A Gluten-Free/Dairy Free Scone Disaster

I have been baking scones and freezing them the last few days.  I have some organic half and half that needs to be used up; so I am baking.

My favorite scone has lemon or orange zest and poppy seeds (sometimes substituted with Chia seeds when there are no poppy seeds).  My husband’s favorite scone has chocolate chips and sliced almonds in it (sometimes with a little coconut thrown in for good measure).

Thursday I made a batch of my scones and substituted Chia seeds because the organic poppy seeds I had ordered didn’t arrive. I also made a batch of my husband’s scones.  I decided to be a little creative and added some almond flour. The recipe calls for 2 cups of flour and I substituted 1/2 cup almond flour for part of the organic wheat flour.  They tasted very good.

This morning I woke up determined to use the last of my half and half before it went bad.  Again I made a batch of my scones using lemon zest (need to order some more orange zest) and Chia seeds.  I also decided I would bake another batch of scones for my husband.

This is where I became a little over creative.  The batch on Thursday with 1/2 cup of almond flour and 1 1/2 cups of organic wheat flour had been good.  Why not change things up?  I decided to make this batch totally gluten-free.  For the 2 cups of flour required in the recipe I used 1 1/2 cups almond flour and 1/2 cup coconut flour (since I add coconut anyway) and a handful of unsulfured coconut.  Hmm, I thought. Why not substitute the tablespoon of sugar with coconut sugar (denser and dryer than I thought but I went for it anyway).  Well, if I was going to go gluten-free, why not go dairy free?  I substituted the half and half for almond milk (left over from my daughter’s visit) and mixed it with the two eggs.

So, if I am going dairy free, I should use dairy-free mini chocolate chips.  I mixed everything together and patted it out into a circle on  parchment paper.  I brushed the entire surface with a little of the almond milk/egg mixture and added a few more dairy-free chocolate chips and slivered almonds.  Into the oven it went.

25 minutes later, I pulled out the scones with the melted chocolate chips and slivered almonds on top of a golden brown crust.  My husband walks in a little while later and takes a slice of his favorite scone right off the baking sheet.  He immediately asks what I did different.  He says they are grainy and hard to swallow.  Uh Oh!  I had to taste them for myself.  And yes they were a little gritty tasting and kind of stuck to the back of my throat when I swallowed, calling for a quick glass of water to get them down.

What went wrong?  Should I have balanced the almond flour and coconut flour better?  Should I have used coconut syrup instead of coconut sugar?  Should I have used more almond milk or added an extra egg?  I just don’t know!  If any of you who have baked gluten-free have any suggestions, I would love to hear them.  Until then, I may not be trying this again for a bit.

Catch-Up Mondays: How am I ever going to live with Chemical Sensitivity? – revisited

This was first posted on February 9, 2013.  Since that time I have continued to blog and stand up for those of us with chemical sensitivities, environmental illness, and chronic illnesses.  I have published my book and made a valiant effort to get the word out about environmental illness and what it is like living in isolation and fighting to not only survive but find the courage to move forward and dare to hope that life will get better.  Thank you all for sharing with me your stories and listening to mine.

Someone typed this question into a search engine that led them to my blog. How do we live with chemical sensitivity? We have to put one foot in front of the other and trudge through the unknown of what does or does not work for us. We have to live with others (many in the medical profession) not believing that we could be reacting to even trace amounts of a chemical. We have to convince others to avoid chemicals and the wearing of fragrant products (which are loaded with man-made chemicals to produce these fragrances).

How do we live with chemical sensitivity? We become diligent in keeping our environment safe, learn to become an advocate for our own health despite the naysayers, and we learn to deal with isolation. The isolation is many times much harder than trying to convince a doctor that you are not malingering and you truly are reactive. We learn to deal with the “loss of self” that often accompanies the loss of friends who do not care to make themselves safe for you to be around them, the loss of a job as it is difficult to be a productive worker in a work environment full of chemicals, and the loss of our beauty and hair care products.

To live with chemical sensitivity you need to develop a “thick skin”. You need to begin to care more about your health and welfare than you do about what others are or are not saying (You can’t go to the mall shopping with me?  Can you at least go to lunch?  OR How are you? Is there anything I can do the help? How can I make it so that we can be together?). To live with chemical sensitivity you need to say I am going to fight, I am no longer going to be a victim, I will be a SURVIVOR! To live with chemical sensitivity you need to focus on what you still can do and accomplish and not allow yourself to dwell on what you cannot do or places you cannot go.

I have dealt with all these demons. I have dealt with the loss of friends but relished in those that have stayed around and made the effort to be able to be around me. I have dealt with the loss of a job and sitting at home wondering “who I was” and “what would I ever be able to do again”. I have dealt with the medical community (mostly the workers’ compensation doctors and thankfully not my medical caregivers) not believing my condition and stating that I had a somatoform disorder. I have thrown away clothes and learned to live with those that could easily be washed and dried rather than dry cleaned. I have given up my contact lenses in lieu of glasses because I cannot tolerate the chemicals in the lenses or the solution. I have given up coloring my hair and been forced to allow it to stay gray. I have let myself stay in the victim role far longer than I should have.

Slowly I have thumbed my nose at those demons. In place of a job I now have written a book  soon to be published about my life and started writing this blog where I have found so many comforting words and words of encouragement from others in my plight and from those who do not suffer from this affliction. I no longer focus all my attention on “who I was or what I did” and spend more time realizing that I am still the same person but with limitations (maybe a better and more caring person because of these limitations). I have learned that I am okay with my glasses and my casual clothing. I am mostly okay without my make-up and hair coloring. I now say that I am a SURVIVOR! I refuse to allow the victim mentality to swallow me up and make depression my constant companion as it once was, thus allowing me to be the victor not the illness or the depression.

I have sought out therapy, I have surrounded myself with the love of my family and those friends who have hung with me, I have found hair stylists willing to come to me and cut my hair in the backyard or to suit up in tyvek to come into my home and cut my hair, I have started sewing again and doing crafts that once gave me so much joy (using only products that I can tolerate) and I am telling the world what mold, mycotoxins and chemicals can do.

So – How do you deal with chemical sensitivity? You first choose that you are going to take control and do whatever is best for you despite those that are against you. You surround yourself with those that you can count on for love and support. You rebuild your life by doing what you can and not allowing what you can’t to control you. You fight to survive.  You fight to find the courage to continue on and you fight for the hope that you will be okay.  Then you stare those demons of depression and victimization in the face and tell them NO! NO, I WON’T BE A VICTIM! I AM A SURVIVOR!

For those of you following along or new to this blog: How do you live with chemical sensitivity?

May is Multiple Chemical Sensitivity Month

The Month of May has been dedicated as Multiple Chemical Sensitivity (MCS) month.  I suffer from MCS (also known as Environmental Illness and Chemical Sensitivity). I did not always have MCS.  I was a very active and busy stay-at-home mother of two.  I was active in their school, their activities, as well as in our community.  I lived by my at-a-glance calendar to know when and where I was supposed to be at any given time on any given day.  I sewed and did craft fairs. I baked and canned, and did things with my friends.

My MCS began after a mold exposure in my work place where it first manifested itself in severe sinus issues and brain issues (although I didn’t realize the brain issues were happening in the beginning).  My boss would bring a phone message that I had written and placed on his desk to have me explain it to him.  I remember many times writing a message and then realizing it was sloppy or didn’t make sense and redo it.  The sad thing is that even then the messages would not make sense.  Yet I still had no idea my brain wasn’t functioning correctly.

I didn’t know what was wrong with me or why I was constantly getting sick.  It took nearly a year to discover that there was mold in the office and and a few more months before my ENT could get mucous taken from my sinuses to grow in a culture plate. I rapidly began reacting to all sorts of medication and developing food allergies.  The chemical sensitivity took a little longer to rear its UGLY head.  When it did, I was shocked.  I had seen others where the masks and walk around in a daze but that wasn’t me!  At least that is what I kept telling myself until it was me and there was no escaping it or denying it. Mold isn’t the only thing that can  push someone into “MCS or environmental illness land”.  An extreme exposure to pesticides will do it.  An extreme exposure to chemicals in the workplace can do it.  Slow but steady exposures to chemicals can also eventually cause someone to become sensitized to chemicals.  How much is too much?  There is no answer to that.  Everyone reacts to different levels of a chemical.  Not everyone has the same toxic load already before being exposed. Do people think we are crazy?  Do they think it is all in our head?  There are some that do.  Sadly there are family members who condemn their own brother or sister or mother for having a sensitivity to chemicals.  They truly do not want to accept that this condition actually exists.  For if this exists, they may have to change their habits to avoid causing further illness to their family member.  I have seen husbands leave their wives over this illness.

The isolation that MCS causes is dark and lonely.  Very lonely.  For that reason I chose many years ago that I would begin writing my story.  I would become an advocate to the best of my ability. I started by writing my story which is now available (Allergic to Life:  My Battle for Survival, Courage, and Hope).  A link to purchase is in the sidebar.

Throughout the month I will be reblogging posts from some of my fellow bloggers who are also posting about MCS Awareness month. Last month I celebrated my 2 year Blogiversary.  As a celebration, I began a giveaway on Rafflectopter.  I several items included in the giveaway.  Take a moment to click on the link and enter the giveaway which runs through the end of May.

Catch-Up Mondays: Sulfites and Drugs – revisited

This is part four of the four-part series of posts on sulfites.  The staggering number of drugs that contain sulfites as a preservative is unbelievable.  I am sure this list is not complete but it gives you a good awareness of how far reaching sulfite use is.

I know many of you out there might not use medications. But at some point in your life, there may not be an option in order to stay alive. I have discovered that there are medications that contain sulfites. I am sure this list is by no means complete as new drugs and variations of those drugs come on the market daily. Following is what I have learned about drugs and sulfites.

Bronchodilator solutions for asthma

• Adrenalin chloride 1:1000 concentration
• Bronkosol
• Isuprel hydrochloride solution

Topical eye drops

• Pred-Mild
• Pred-Forte
• Sulfacetamide
• Prednisol
• desamethasone

Injectable medications

• Amikacin
• Betamethasone phosphate (Celestone)
• Chloropromazine (Thorazine)
• Dexamethasone phosphate (Decadron)
• Dopamine
• Epinephrine (Adrenaline, Ana-Kit, Epi-Pen)
• Garamycin
• Gentamycin – I have taken this before and reacted.
• Isoetharine HCI
• Isoproterenol (injectable)
• Lidocaine with epinephrine (Xylocaine) When I needed this before, I had to get it preservative free.
• Meperidine (Demerol)
• Metarminol
• Norepinephrine (Levophed)
• Procaine (Novacaine)
• Prochloroperazine (Compazine)
• Promethazine (Phenergan)
• Solutions for total parenteral nutrition and dialysis
• Tobramycin

General Anesthesia Drugs

Sites I visited to get my sulfite information:

http://www.webmd.com/allergies/guide/sulfite-sensitivity

http://ww.sulfites.org/sulfite-foods

http://nutrition.about.com/od/recipesmenus/a/organic.htm

http://www.allergy-and-diabetic-health.com/sulfite-free-foods-no-way-out-to-survive-the-fight-goes-on.html

http://www.allergy-and-diabetic-health.com/sufites-in-bleached-sugar-beet-and-cane.html

http://www.wikihow.com/Live-With-an-Allergy-to-Sulfites

http://allergies.about.com/od/foodallergies/a/sulfites.htm

Catch-Up Mondays: What are sulfites? Why do we need them?

This was the second post in my sulfite series.  It was originally shared on February 1, 2013.  It is amazing the number of ways sulfites can be listed.  It is like corn (hydrolyzed vegetable protein, food starch, etc.) and wheat (food starch, maltodextrin).  There are so many ways these items are hidden in labeling.

Sulfites or sulfates are preservatives used in various foods and medications. They have been used for centuries as food additives but can occur naturally in fermented beverages and wines. Sulfites (a group of chemical compounds including sulfur and oxygen) are found in such forms as sodium sulfite, sodium bisulfite, sodium metabisulfite, potassium bisulfite and potassium metabisulfite.

Sulfites are known to increase asthma symptoms in approximately 5% of asthmatics especially adults with severe asthma.  According to an article on about.com less is known about hives/swelling and anaphylaxis as a result of sulfites (guess they haven’t seen me in action). I have read that it is not completely known how sulfites cause reactions in certain people. Some make allergic antibodies and others do not. Gases generated from sulfites can cause muscle spasms in the lungs of some asthmatics. Some people may not metabolize the sulfites appropriately.  I believe this is what happens to me which might explain not only the asthma symptoms but the severe stomach cramping and flushing.  While some have been diagnosed with sulfite allergy using skin testing, it seems that there is no reliable commercially available skin test for sulfite allergy.  The diagnosis is most often based on a history of adverse reactions to foods containing sulfites.  I never thought to ask Dr. William Rea while I was at the Environmental Health Center-Dallas if he had a test for sulfites. 

For me even more concerning is that sulfites are added to some medications for their antioxidant properties.  I carry an epi-pen with me in case my histamine injections are not enough to stop a severe reaction.  Sulfites are added to injectable epinephrine to prevent browning which can decrease the effectiveness of the epinephrine.  While this is not optimal for someone with a sulfite sensitivity, it is widely felt that the life saving benefits of the epinephrine out way the sulfites in it.    I also have a rescue inhaler.  Sulfites can be in some inhaler solutions while many of them now no longer contain sulfites due to safety concerns.

Yesterday I mentioned that at the time of my diagnosis of sulfite sensitivity, they were being used regularly in stores and salad bars on fresh foods and there were no required labels on packaged goods.  In 1986 the Food and Drug Administration (FDA) banned the use of sulfites in salad bars particularly on fresh lettuce (potatoes still do not have a ban on them).  It also required foods containing more than 10 ppm (parts per million) to be declared on food labels.  Experts are not yet sure how much sulfite is enough to cause a reaction or what mechanisms might cause the reaction.  Again as I mentioned previously, for those who don’t know the degree of sensitivity, this may not be enough to make packaged food safe for them.  Many restaurants use potato products and it is, therefore, recommended that potatoes with the exception of baked potatoes (skin on) be avoided for sulfite sensitive individuals.

Is this getting your attention on the seriousness of sulfite and sulfite sensitivities like mine?  I knew when I started researching and pulling everything together it was going to be too much information to absorb in a single post.  So, what foods can have sulfites added?  What medications?  Stay tuned for my next post or posts.

Catch-Up Mondays: Sulfites and Me, an Ugly Combination – revisited

 

This was first posted on January 31, 2013.  This post was the first of a four-part talk about sulfites.  I will be sharing the subsequent posts on the following Catch-Up Mondays.

I talked about sulfite sensitivity recently.  Years ago my husband and I would go to Happy Steak (a place to eat when you were on a budget back in the day).  We would order steak and the salad bar.  It never failed that within hours after eating at the restaurant I would develop horrible symptoms.  My throat would itch, my sinuses would get swollen and congested, and my chest would tighten up.  This was followed by a trip to the bathroom where I could barely sit on the toilet because of the intense feeling I was going to pass out and my body feeling hot.  As if this wasn’t enough, after taking an antihistamine, my nose would run nonstop (imagine a water faucet in your head being turned on to full).  Then I would be freezing cold and just let myself lie on the bathroom floor covered in a blanket or my robe because I didn’t have the energy to move or the desire to be too far from the bathroom.

I visited an allergist out-of-town and mentioned these bizarre symptoms to her and what usually preceded them (usually a trip to a salad bar somewhere).  Wow!  She immediately knew what the culprit was.  She said I had a severe sulfite sensitivity.  She then proceeded to tell me that sulfites where on most items in food bars (lettuce, potatoes, fruit).  I was given a list of what sulfites were, what foods they were in and what to avoid.  At the time, there was a medical facility in La Jolla, a southern California town, where sulfite sensitivity testing was done.  From what I remember of that conversation, I would have to stay there a minimum of a week.  I would be under constant supervision as they tested me by having me ingest sulfites to see the minimum amount that it would take to cause a reaction.  My husband and I talked this over.  Going there would give me a sense of how sensitive and severe my sulfite sensitivity would be.  The only problem was that it really wouldn’t help me in terms of which foods I should/should not avoid.  At the time, sulfites were not required to be disclosed on food labeling.  Rather than make the trip and go through the risk of testing myself, we decided that I would just give up everything on the list.  I am not sure exactly how I came upon a Sulfite Support Group (there were no computer groups back then) but I was able to get a more detailed list and a newsletter in support of dealing with sulfites.

Fast forward several years.  We were having a special dinner with friends in their home followed by cards.  The menu we planned was steak and lobster tail along with baked potatoes and some form of dessert.  We had chosen lobster because Costco was having a seafood special and we were going to buy fresh lobster.  My husband and I were given the task of making the trip to buy the lobster.  We arrived at Costco only to find that they didn’t have fresh lobster.  Our taste buds were crying out for lobster and determined not to leave without it, we browsed and purchased frozen lobster tails.   The evening in the home of our friends had been wonderful, good company and delicious, mouth-watering steak and lobster.  With dinner over, we settled down to cards.  In the midst of our cards, my asthma starting acting up.  I felt kind of flushed and out of sorts.  We left early barely making home when the stomach cramps and congestion kicked in.  I was dying.  Every part of my body was rebelling.  In an attempt to make sense of this I had my husband call to inquire about the lobster packaging.  After digging through the garbage our friends confirmed my fears, the lobster had been preserved in sulfites.

I learned then and there that I needed to be a better label reader.  If I wasn’t sure about a frozen item I needed to avoid it and contact the company and ask questions.  In my next post I will discuss more about what sulfites are, other names of sulfites and what foods contain sulfites.