The Frustration of a Flare-Up

    Before you can know the Frustrations of a Flare-up you must know what a Flare-up is: 

Flare-up (as defined by me):  The uncalled for arrival of unwanted symptoms, scars, and   emotions!

  
Anyone with an autoimmune disease or condition understands the full meaning of the ugly flare-up.  It always seems to arrive uninvited at the most inconvenient times, littering nasty symptoms through the canvas of your body, with no concern as to how this will affect your previously planned but now irrelevant schedule of events.  

I used to call these occurrences a "reaction".  Yes, I'm having another "reaction".  However, that implies that you are "reacting to" something and therefore invites these questions: "Do you know what you're reacting to this time?  Did you accidentally get glutened?  Why are you reacting again?  What did you eat? I thought you fixed this by going gluten free?"  The only answers I have to these, are at best, just a guess as to what my overly sensitive immune system has flared up to this time.

Nice and early this morning I woke up with extreme joint pain in my left arm, no it wasn't a heart attack but it was painful enough to get me out of bed at 4am to retrieve my emergency supply of benadryl and some over the counter pain meds.  I could feel the frustration building from that point on because I knew that this day was not in my control anymore.  These are the moments when I have to spend a bit of time talking to God and asking Him to help me deal with these unwanted frustrations:

Frustration #1:  

Anytime you are in pain it is frustrating - you tend to be short with your loved ones - you tend to be cranky with every little thing that might go wrong.  It's like when you hit your fingernail with the hammer and someone asks if you're alright just as it happens, in the midst of the pain all you want to say is "NO, I'm not alright, does it look like I'm alright I just hammered my nail black and blue!".  However, you usually just say, "Yea, I'm okay"as you roll your eyes at least that's what I do if you ask my mom she'll tell you.

Remedy for #1:  

While facing this frustration the best thing to do is keep your mouth shut because those around you don't deserve the emotional roller coaster that you are on, they really just want to help you. Although I don't wish to spend every day locked up in my bedroom secluded from my children there are certain moments when it is preferable that I do just that in order to spare them my up and down emotions as even the softest sounds of my husband chewing his food or the kids searching through their legos for their missing piece sound to me like a thousand nails scratching down a chalkboard.  It's just hard to have a decent conversation in this moment.  So yes a little alone time may be called for.

Frustration #2:  

You recognize that this is another set back about to happen and the last thing you want to do is be set back again.  It reminds me of snowshoeing in Vermont after a heavy fluffy snow.  Your snow shoes sink so deep into the snow that it feels like you're climbing a mountain just to take the next step, while at the same time ice cold snow melts into your boots and freezes your legs.  Throughout this 4 year journey with Celiac Disease I have felt so many setbacks and although I try to become numb to the feeling I still get emotional when it happens and I have to truly fight the emotional side effects of another setback. 

Remedy #2:  

For each one of us the remedy to this one may be different.  You must not focus on the disappointment of the setback but instead take it as another opportunity to investigate the causes.  If you're like me you often have no clue what has led to your most recent set back but maybe, as much as we hate to admit it, there might be another trigger food out there to be aware of.  Never stop learning about your disease and how your body reacts to it.  I have begun to keep a food journal as much as I really hope that there are not other foods that I have to eliminate I also want to experience healing.  The other cure I use for this frustration is a note that I wrote myself when I was feeling good reminding myself that although I might be in the dumps for a few days this too shall pass.  Truly I have been having more good days than bad and that is some hope to hold onto.
 
Frustration #3: 

A flare-up means that you're going to be missing out on time with friends and family.  Today our Sunday School class is having a Volleyball tournament and Cookout at the church and I was looking forward to having some down time with friends.  Also, I usually help my husband get everything ready for such events but today I was useless.  The most I was able to do was help him load the grill into the trailer and even that nearly put me into a full blown asthma attack.  It's also frustrating to those who planned to spend time with you, often it's hard for them to understand why you aren't around like you said you would be or like you used to be.  It's a lot of pressure to feel the burden of letting someone down and during a flare-up your thinking is usually physiologically more depressed anyway.  Beware not to allow yourself to dwell on negative thinking.  "...whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things." Phil. 4:8b 

Remedy for #3:  

The only remedy I have for this is to make the best of the good days you have.  There will be times when they are far and few in-between but there will be other times when you'll experience many good days before a flare-up.  Take advantage of your good days to spend time with those you love and enjoy being around. 

Frustration #4: 

This last frustration is mostly rooted in vanity.  It is very frustrating to see the physical side effects of a flare-up.  For each one of us it is different but for most it includes a lot of swelling, water retention, rashes and even a throw back to the horror's of your teen years with acne.  It's just not pretty!

Remedy for #4:  

Just be glad that it goes away! Right?  That's all I could come up with on this one ;)

If you are out there suffering from a Flare-Up right now or you've been where I am then I just want you to know that despite how it feels...You Are Not Alone!!  So keep fighting against the frustrations of the Flare-Up
 

A Day in the Life of a Glutening

The newest word in my vocabulary is "glutening". It has also become a word I loath. I am allergic to gluten and and when you accidentally ingest gluten we call it a "glutening" or "getting glutened".  Oh, if only restaurants could understand what this does to someone with Celiacs.  It is so much more than a preference not to eat gluten, it's even more than an upset tummy or a little nausea.  This happened to me yesterday when in a moment of weakness I made a rookie celiac mistake:

 I was at a local restaurant and ordered a drink...nothing else on their menu was "safe" until I started asking about their french fries.  Most fries don't contain gluten but usually restaurant fries will be cross contaminated when the restaurant cooks them with other fried foods.  So you learn to ask if they have a dedicated fryer just for fries.  I actually did remember to ask this and they said "Yes, we have a dedicated fryer".

Wonderful!!  I can order a small fry with my drink.  This was good news...or so I thought. Unfortunately, I didn't have my husband with me, as he always reminds me to ask if they cook their morning hash browns in the dedicated fryer (which is almost always a yes) and hash browns do contain gluten!  I sat down with my fries and after eating just one I felt a burning in my stomach. Never a good sign...hmm...I quickly set the fries aside and said a quick prayer that my worst fear was wrong.

Well...my stomach was telling me the reality of my mistake...are you serious?  I messed up again?  Maybe it won't be as bad this time?  That's it I'm swearing off of restaurants for good?  Did I mention that there is a very emotional side to being glutened? Every Celiac new or old has been here with me, that moment you realize you have been GLUTENED!  We try so hard to avoid this allergen called gluten, adjusting our eating habits and changing our way of life. Missing the old freedom we used to have to eat whatever and where-ever we want to.  But is it really that big of deal?  How bad can gluten really make you feel?  It really can't be all that bad right?  Is "glutening" a real term? I'm glad you asked.  I thought it would be helpful for those who might not have food allergies to know what someone who does goes through when accidentally ingesting even a small amount of the allergen.  It may also be helpful for those of you who do, to know that you are not the only one out there that faces these issues.

I kept a play by play of what happened yesterday after eating that one fry and this is why Gluten is a big deal to me:


12:01pm – Ordered a soda at a local restaurant and was tempted by the fries.  Asked if they cooked their fries in a dedicated fryer…YES!!!  Awesome their ff are gluten free

12:05pm – Ate one fry…felt it burn a bit as it hit my stomach.  Set the fries aside.

 

12:06pm – Stomach begins cramping

12:10pm – Pain begins to radiate into lower back

12:30pm – 25minutes spent in the bathroom (T.M.I but that's what happens)

12:56pm – Upper shoulder pain begins…cramping still continues in stomach

1:15pm – Back begins itching

1:40pm – Back to the bathroom

2:26pm – Chills begin

2:29pm – Lower back pain increases and travels down my legs radiating in my joints all the way down to my ankles.  

 

2:53pm – Short of breath – using heating pad for back pain (Took 2 Benadryl)

3:14pm – Nausea & Itchy foot rash flares up

4:07pm – Chills continue. Brain fog setting in as well as headache

4:00pm-6:00pm – Rested with heating pad (Took 2 more Benadryl)

6:30pm – Stomach swollen to twice it’s normal size – sneezing begins as well

8:00pm – Short of breath again (2 more Benadryl)

10:15pm – Restless leg syndrome going crazy – whole body achy – very exhausted but insomnia (Benadryl)

Second Day:

Woke up with burning scalp & Pounding headache 

Legs still pretty shaky

Lower back and Joint pain are gone in return:

Stiff neck 

Fatigue 

Sores in mouth 

Any sound or light irritates me (not a great side effect with 4 kiddos)

No appetite 

Symptoms lasted until 7pm of the second day then energy gradually begins to return, appetite returns with a vengeance.  Headache subsides first and then by midnight burning scalp begins to fade away.  

Alas, I have survived yet another glutening! Hopefully I will avoid this rookie mistake next time.

I kept track of this experience for my own good, but thought I would share it because many of you may know people with food allergy issues.  Maybe you can be an advocate, or at least a friendly face when others get annoyed with them for asking a million questions before ordering their food, or asking what ingredients a pot-lock dish was made with.  You might be able to give them an ounce of patience because you now understand that for some of us, one misstep, as small as a french fry, will have two days full of consequences.  If you have a family member celiac's the best thing you can do is let them get lots of rest during the process, try not to get frustrated with them (we are frustrated enough) and help them not to beat themselves up about it.  I have talked to Celiac's who have been gluten free for 10 years and even they get glutened, accidentally, every once in a while.  All of us hate it, but we can deal with it and learn from it each time.

I would love for you to share your experiences with me in the comments below!

Disclaimer:   I do not have any medical training in food allergies and this is a record of my own personal experience with gluten.  No two people are exactly alike in either their reactions or their sensitivities to food allergens so you may find that others have a very different experience and that they may be able to handle more or less than I can. Also, I did not write this so that you would feel sorry for me and what I go through.  I wrote it to be educational.  I love being gluten free because it has given me my life back.  Having to deal with 2 days of sickness is just part of the learning process for me right now.  I hope that it can be a help to others going through the same process. Thanks for reading!

The Biopsy Day

For all those who are unfamiliar with the diagnosis process of Celiac Disease, it often takes many years!  On average a person with Celiac's will suffer symptoms for 10 years before the doctor will order a Celiac panel and they finally begin getting answers to the many health problems they are experiencing.  I am one of the lucky few on the lower end of that spectrum.  My celiac's gene turned on 3 years ago after giving birth to my fourth child, Anna Marie (yes she's totally worth it and no, unfortunately, having another baby will not reverse the switch).  For the last three years my health has deteriorated, my allergic reactions became out of control, I had daily migraines, scalp burning (figured this out when it began to go away), dermatitis herpetiformis (a very itchy skin rash), asthma, and so on.  A few weeks ago after having a severe allergic reaction to Thanksgiving Dinner I asked my doctor to order a Food Allergy Blood Panel & Celiac Panel.  The Celiac panel came back positive and so I was referred to a Gastrointestinal doctor for an endoscopy procedure and small biopsy to confirm the diagnosis.

Today was the big day!  I have been so proud of myself for diligently becoming Gluten Free in the past two weeks (which my doctor told me to do), that the thought of eating gluten was really unappealing. Unfortunately it is best to avoid going GF until AFTER you have completed the endoscopy so that the GI doctor can get the best picture of what your body has been going through.  BTW, our bodies are amazing creations that do a wonderful job of healing themselves when we provide the proper tools for which to do so.  My poor body has had to deal with me daily contaminating, it with a substance (gluten) that I am highly allergic to, for three years, no wonder it began to rebel.  However, just two weeks off of it and it has begun to heal itself. 

Anyways, Dr. Vong told me to eat some gluten leading up to the procedure.  Here is where there was some discrepancy:  I heard him say "You know, eat a large piece of pizza the day before or something" but apparently he also said (or meant to say), "Eat gluten for the 3 days leading up to the procedure" so that they can really see how the intestine reacts.  The pre-op appointment I had with him happened to come the day after I came down with strep throat so I might have been a little out of it when receiving those instructions...

To me, this goes to show just how much I hate getting sick from gluten.  I REALLY thought I was indulging by eating that italian cheese bread and cheesecake at 5pm the night before!   This week is Christmas and we were blessed enough to have all my family up on Christmas day (3 days before my procedure).  I did NOT want to be sick the whole time everyone was here and if you remember Thanksgiving Dinner was the day that I had a very severe reaction and some of my family was here to witness that...not fun!  As a matter of fact my mom suggested that maybe it would be better if I just didn't eat for the two days that they were up!  Of course she was just joking but she was very nervous about me having another reaction and she hates seeing me sick (although it is always great to have mom at home if you're going to get sick like that) ;)  So all this to say I was not in a hurry to eat the gluten and I knew that it was going to give me at least some side effects (and it has).  So I delayed eating gluten until 5pm last night.

I had no idea what to expect, so I was a little nervous about how much I would feel or remember about them sticking a tube down my throat.  I had heard conflicting reports but I am here now to say that the worst part was getting the IV put in.  You're not supposed to eat or drink anything after midnight and my procedure was at 11:30am so by this time my veins which are already smaller were not cooperating.  They even had to bring out this cool vein finder scanner, which my husband had a fun time playing with after they did get the IV in.  We found that he has much better veins for an IV than I do.  However, I was the one that needed it so that wasn't helpful information!

After finally getting an IV to stick, they walked me back to the procedure room. Dr. Vong came in and asked me if I had eaten that big piece of pizza.  Then he asked what else I had...opps?  I really should have been eating it over 3 days...which means I could have eaten that green bean casserole on Christmas day but oh well!  I also would have had a lot more sickness and probably wouldn't have enjoyed all the family time that I was blessed with.  Sorry, I keep getting distracted, anyways, he then said "Goodnight" and the next thing I remember is waking up in the recovery room with my husband sitting next to me.  It was quick and painless.  A minute later the doctor came in with some pictures and let us know that although there was some inflammation there was no damage visible to the naked eye which is good news.  He also said that 90% of the Celiac patients he sees do not have visible damage and that's why they take the biopsies to look under a microscope and that's usually where they see some.  All in all it was an easy procedure, I got a great nap and felt relaxed the rest of the day.  Near the end of the day the meds have worn off and my throat feels a little sore when I swallow but they did stick a big camera tube down my throat so that's very normal ;)

An Indulgent Day of Glutening

Tomorrow is the big day...the Endoscopy & biopsy to confirm the Celiac disease and document any existing damage to my small intestine.  Since I have been Gluten Free for two weeks my doctor asked me to go ahead and eat some gluten today to help him see the reaction to my intestine.  I woke up this morning and really couldn't decide what delicious gluten filled item I would most enjoy as my "Last Supper of Gluten".  I avoided it most the day trying to delay the impending reaction that would surely follow my indulgence.  Finally, at 4:30pm I was out shopping with my sisters-in-love and before heading home a sign came to me, I knew what I should have:

Little Caesar's Italian Cheese Bread & Sauce!  You should have seen me walking in and placing my order, I truly felt a little giddy.  You know, the excitement that comes from doing something that you don't ever get to do (or never will get to do again).  I suppose it could also be compared to doing something you're not supposed to do but then I'd have to accept the guilt and I was only following doctor's orders!!!  Unfortunately, I realized that since I had been avoiding gluten most of the day I better go ahead and eat some of that gluten filled cheesecake that I had stayed away from all day on Christmas!  I must say I definitely savored it and by "it" I mean a few pieces. ;)

The Aftermath:  I certainly enjoyed my indulgence of gluten however, there is reason that I will not be returning to it again.  Although the reaction was not as bad as I expected it to be it began to hit me about 8:00pm.  The typical stomach cramping, headache, brain fog, and fatigue came to haunt me just like that monster that used to sleep under my bed as a little girl.  I went ahead and hydrated myself with a few bottled waters just before eleven because no eating or drinking after midnight is allowed and since my procedure isn't until 11:30am I'm a little concerned about being dehydrated.  Hopefully I have ingested enough gluten to inflame my intestines without making me too sick!  Overall, I have enjoyed my one day splurge of indulgence on gluten.  I do feel a little guilty, maybe I didn't need the cheese bread & cheesecake but we'll see what the doc says (and sees) tomorrow!

What!! I have a Disease??

It doesn't matter who you are or when it happens, once you find out that you have a disease there will be an array of emotions that you travel through in the days following diagnose.  For me, due to the nature of problems I had leading up to diagnose my first emotion was:

RELIEF - Finally I had ANSWERS to the questions I had been asking.  Something that could explain the many health and allergy problems I have been experiencing for the past 3 years with no relief.   What a blessing! An answer to hundreds of prayers!  I have Celiac's Disease, an autoimmune disease that causes your body to produce antibodies to Gluten, a protein found in Wheat/Whey, Rye, Barley & Malt.  Basically causing me to have an allergic reaction to Gluten.  If you know someone who has been diagnosed with Celiac's on average it takes 10 years for a person to even have a doctor test them for it.  Partially because the disease tends to cause other health problems and the doctor ends up focusing on treating those first without realizing the underlying cause for these problems could actually be Celiac's.  Although it is an autoimmune disease it really is probably the best one to have because although it may not be curable it is definitely treatable simply by going Gluten Free!  This takes effort/work on your part and has a huge learning curve but it is very doable.

So there, I have a disease and I am relieved...until the impact begins to set in and then I turn a corner to find my next emotion:

DENIAL - I do not need to go Gluten Free!  I can't go Gluten Free!  Gluten is in EVERYTHING!  Maybe the test results were wrong or inconclusive.  I should probably call my doctor again and make sure that I understood her correctly when she said I needed to adopt a gluten free diet and that she believed I would feel much better by doing so.  She must not understand that I am a busy mom of four and I don't have the time or energy to make all my food from scratch.  I like fresh buttered rolls and cheesecake, *french fries and mashed potatoes and pasta and eating out for convenience sake.  No, this whole gluten free thing is really just a fade anyways right???  It can't be what's wrong with me.

*Just a note that there is no gluten in mashed potatoes or french fries (unless they are cooked in contaminated oil) but at the time of my diagnosis I didn't fully understand what did and didn't contain gluten and I thought I must say goodbye to them forever along with everything else good in my life ;)


At that point my husband yanked the wheel away from me and brought me back to the hard reality...I do not get to choose whether or not I have Celiac's Disease.  I was born with a gene for it and after giving birth to my fourth precious baby (our Adorable Annabunkin) the hormonal changes I went through must have tripped that gene into action beginning this tirade of health issues. After  seeking for 3 years this was an answer...it was a blessing remember!  So what do I do now?  Acceptance...nope, not yet, first I ran to this emotion:

OVERWHELMED - I can not handle this right now (as if I could pick a better time later).  This is when the tears came! It's time to cry like only a woman can cry.  And I did just that, I cried for fear of the unknown, fear that I wouldn't be able to figure things out, fear that I would have to eat dry fake bread and hummus for the rest of my life.  Have you ever been there before?  Overwhelmed by a health problem or maybe a life circumstance like losing your job or another car repair?  It happens to the best of us and it's okay.  That's when I got to just melt in my husband's arms and pray to our father above, first thanking him for an answer to prayer and second begging him for the strength and peace I needed to move on from this emotion.

God being the ever faithful Father did just that, he granted me the peace that everything would indeed be alright and just like every other crisis I have faced in life big and small He would see me through it.  With His grace I was able to move onto the next emotion:

ACCEPTANCE - I can do this!  I will survive this bump in the road and I will ask God to open the door for me to be able to glorify Him through this.  Once you hit this emotion you begin to accept that things will be different from here on out but that's okay and different doesn't mean bad, miserable, dreadful etc. It just means not the same as before.

Reaching ACCEPTANCE brought a new cascade of emotions:

JOY (we forget that joy is not based on our circumstances but on where we put our focus)
THANKFULNESS (that I am okay and I have a great support system in family and church)
RELIEF (remember I have an answer for all the craziness)
PEACE (everything will be okay)
LOVE (for life) 
EXCITEMENT (to learn all about this condition)

Does this mean that I will never feel OVERWHELMED by my disease again....NO, it doesn't even mean that I can make it a whole day without having moments of feeling overwhelmed!  However, if I continue to take it a day at a time, trusting God to give me what I need for each day I will be able to overcome the difficulties of this little disease and live a better healthier life for the body God gave me!

Psalm 91:1-4

He that dwelleth in the secret place of the most High 

shall abide under the shadow of the Almighty.

I will say of the LORD, 

He is my refuge and my fortress:

my God; in him will I trust.

Surely he shall deliver thee from the snare of the fowler,

 and from the noisome pestilence 

He shall cover thee with his feathers,

and under his wings shall thou trust: 

his truth shall be thy shield and buckler.

 

Does Allergy Immunotherapy Work?

    It has been one year since I started allergy shots (immunotherapy) for severe cedar, grass, and mold spore allergies.  I began a regimen of two shots a week, one set for the tree/grass pollen and one for the mold spores.  If you're not familiar with how allergy shots work, each shot contains a very small amount of the specific substance that triggers your allergic reactions. The amount is large enough to trigger an immune system response but hopefully small enough that it shouldn't trigger a full-blown allergic reaction (not usually the case for me).
Over time (a long time), your doctor increases the dose of allergens in each of your allergy shots. This helps get your body used to the allergens (desensitization) and helps your immune system to build up a tolerance with the goal that your allergy symptoms begin to diminish.   The best treatment for allergies is avoidance of the trigger but obviously with outdoor allergies avoidance is not a possibility, therefore many people turn to immunotherapy.
   Throughout the last year I have had a lot of people ask me if the allergy shots work or more accurately when will they start working for me.  That question is a difficult one to answer, the facts are that immunotherapy works about 75-85% of the time.  Is it working for me...YES! But it has taken the full year of treatment to even begin to see any difference and it does (or did for me) get worse before it gets better.  I am very thankful to say that after one year of treatment I am beginning to see a change.  This is NOT a miracle treatment, it's not an overnight fix!  However, it is worth the difficulties that come along with it when you begin to be able to live a normal life once again.  I'll go into the details of my year of treatment in the next post but I would highly recommend allergy immunotherapy if you are currently fighting a daily battle, trying to control what seem to be uncontrollable allergies. 
   Allergy shots are not right in every situation but here are some indicators that they might be right for you:

Should I Have Allergy Shots?

Maybe-- If you are allergic to an unavoidable plant, animal, or insect.
Maybe-- If you have to take large amounts of medicine to control your allergies but still have symptoms.
Maybe-- If your allergies are seriously affecting your daily life.
Maybe-- If you have lost days to fatigue and infection.
Maybe-- If you are willing to make a commitment of 3 to 5 years of year-round injections.          

The last paragraph of info found at this site: 
http://www.ccent.com/allergy-treatment-fresno-visalia-california.htm 

August Allergy Update

For those of you who have followed me as I have struggled to deal with sudden allergic reactions we are beginning to get some answers.  After months of trying to go through our insurance company for allergy shots and getting no where we have switched doctors and decided to pay for the allergy testing and shots on our own.  I love my new doctor Kristi Baker in Clinton, Oklahoma.  She spent over an hour with me at my first visit last Tuesday.  She started me on a new regimen of medications along with a 7 day "No Flour, No Sugar, No Artificial Sugar" eating plan and then this coming Tuesday she will tell me what foods I can add back into my diet.  

  She prescribed Flova for my migraines and praise the Lord it works!!!  I might actually be able to control the migraines that I know are awaiting me this November when the Mountain Cedar Pollen starts back up.  It is a preventative drug that I take when I feel a migraine coming on or when I know I'm going to get a migraine, like every time the pollen count is over 7.   I took one on Wednesday and it worked great!!!  Unlike the Imatrex that I tried a few months ago and had a bad reaction to.  

   The bad news is that my asthma has been aggravated by the allergy issues I've had and so I had to go back on a daily asthma steroid inhaler and an albuterol regimen.  It has been 18 years since I've had to be on daily asthma medicine so I was a little discouraged to know for sure that it's back.  But my doc feels that if we get the allergies under control the asthma will go away.   I'll write a little more about this new development in my next post.

   Anyways, we found out that it will cost $1500 for the allergy testing and one years worth of allergy shots so we now know what we're going to do with the money from my husbands bass boat once it sell ;)  Oh yes, he's excited about that...he wants a healthy wife right??  Yes, he's been great about it, that was his first idea for coming up with the money.  Don't worry he has a two man bass boat that he prefers to use anyways.  So hopefully by next month God will have provided the money needed to go ahead and start treatment.  Immunotherapy (allergy shots) is the only proven way to take care of these airborne pollen allergies.  I must build up my immunity.  

   For the time being I continue to take 2 Zyrtec-D, 1 Zantac and Flonase (nasal steriod)  daily to help prepare and strengthen my system for the battle against these pollens until I can build up an immunity with the allergy shots.