Celiac Disease and Children: Some Things to Keep in Mind

By Rachel Sircy

pic 1I’ve been thinking lately about my daughter, who is four, and about whether or not she may also have celiac disease. I’m sure that those of you out there who are celiacs wonder about passing on your gluten intolerant genes to your children. So, for those out there wondering if you should get your children tested for celiac, here are some facts from the Celiac Foundation’s website about children and celiac disease:

* Children with a first degree relative who is a celiac have a 1 in 10 chance of developing celiac disease. So, it’s not a certainty that your child will develop celiac disease if you have it, but they have a higher chance than someone who doesn’t have a close relative (parent, sibling) with celiac.

* Some children start showing signs at different times than others. The jury is still out on why this happens, but some children will begin to show signs of celiac in late infancy or toddler-hood and some don’t develop symptoms until much later in childhood, even into the late teens or early adulthood. What this means is that even if your child is older and has been consuming gluten for most of his or her life, they can still develop celiac disease.

* Children of different ages are more likely to exhibit different symptoms, but there is some overlap in the signs children manifest when they have celiac. Keep an eye on your child if they have a lot of bloating, gas, constipation or foul-smelling diarrhea, chronic fatigue, irritability and especially if they are very young and are vomiting frequently and have poor growth or failure to thrive. Some rarer or more unusual symptoms which can appear in childhood are frequent mouth sores (I still get these!) and that itchy, blistery skin rash known as dermatitis herpeteformis.

pic 2So, apparently severe celiac disease is not common among children anymore, so the symptoms listed above may not be strong enough to be alarming. However, if you know that your child has a higher risk of celiac disease, just be on the look out for those symptoms listed above. And make sure you check out the Celiac Foundation’s website, they have a wealth of information for you to draw from. Remember, children heal from celiac disease much better than adults do. It’s better to get your child tested earlier rather than later because the sooner you can get them on a gluten free diet, the sooner they can heal.

Living with a Chronic Illness

By: Tina Cameron

Not many people know that my two sons and I have a chronic illness that has no cure. It all began when my oldest was 9 years old. He was injured in his karate class (kicked accidentally in the head) by another kid. He was close to having a detached retina, had a black eye, busted blood vessels and spent 8 weeks wearing an eye patch. What we didn’t realize for several weeks was that this kick to his head turned out to be a blessing in disguise. He started having a “clicking” sound when he would move his head up and down or left and right. He thought it was a party trick. Little did we know that it was actually very serious. From his pediatrician’s office we were sent straight to Palmetto Health Richland for STAT CT Scans of his neck and spine. I began getting nervous as they kept coming to get him for more scans. At last, I heard my name being called and looked up and it was the radiologist with my son and tons of CT films in hand. She said Dr. Fred Piehl (pediatric orthopedic surgeon) is waiting for you now. I said, “it is 4:50, they are closing”. She replied, he is keeping the office open for you, you need to go now. I called my mom and my ex-husband and they both met us there.

As we all set in his office, I feared the worst. Corey was in the hallway and he spoke to us first and informed us what his condition was and that it could be life-threatening, and that Corey needed to be aware of it. He was diagnosed with Atlanto-Axial Instability of his Cervical 1 and 2 spine. He could turn, cough, sneeze or get in his head and it cause him to break his neck and with that he could break it and be fine, break it and become a quadriplegic instantly, or break it and it kill him instantly. We went home in shock. Everything changed, from how his bed was positioned, to never being able to play contact sports, diving in my parent’s pool, and his karate career was over. He was also home-bound from school for 9 months. He was 9 hours short of getting his black belt. He what is edsalso taught two classes of karate a week. We were sent to a neurosurgeon and neurologist as well geneticist. After our first visit to the neurologist, he said I think you all have this rare connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. He told me to look it up and then sent us immediately for lab work on another floor in his office building. Shortly after his labs were drawn and we were waiting to leave, Corey grabbed his head and said, “I don’t feel well”. He proceeded to fall out of the chair, had a Grand-Mal Seizure and quit breathing and his heart stopped. I am a nurse and at that moment, I freaked out and was only the mommy. Thank God there were two other nurses there for lab work that revived him. We were on campus of the Children’s Hospital, so we were admitted from the emergency room for the weekend. He was also having incontinence of urine and numbness/tingling in all his extremities. Seizures also go with the Ehlers-Danlos Syndrome (EDS).

Once we had the official diagnosis from the geneticist, I became obsessed with finding everything I could about it. My friends who are physicians had not seen cases in over 20 years. It can affect your heart and affects all your connective tissue in your body, it affects your skin. The type we have, type 3 is now called hEDS (hypermobile Ehlers-Danlos Syndrome). There are now 13 different type of EDS. It is a group of inherited connective tissue disorders caused by abnormalities in the structure, production and/or processing of collagen. So, we have faulty collagen. Collagen supplements do not work for us, because it is our DNA that is screwed up. Basically, the boys and I have easy bruising, easy bleeding, incisions after surgery do not stay closed and we are extremely hypermobile and have soft, stretchy skin. We are prone to multiple dislocations daily, pain all over, bruises that come from something as simple as rolling over in bed. EDSers also have multiple medicine and food allergies and Corey and I do. This condition is hereditary, so unfortunately if my children have kids, there is a 50/50 chance their kids will have it as well. The most serious type is vEDS (vascular EDS)-this is where most people do not live past 35 and they usually die unexpectedly from an aortic dissection. My older son has the most serious case of hEDS out of the three of us and I have it moderately and my youngest just has it mildly.

When Corey was growing up, he began having dislocations from changing his shirt or raising his hand in class, to hip dislocating from walking in the school halls. He went through extensive physical therapy for 3 months and to this day must work out daily. We ended up not having the rod placed in his spine and gradually the numbness and incontinence went away. His instability in his C1 C2 spine has closed some which is wonderful. He learned how to put his shoulder or hip back in place on his own to avoid trips to the ER.

My hip has dislocated once, my shoulder 3-4 times from rolling over in bed when sleeping. I am in constant pain all over almost daily. My knees are bad and slip out at times, so I have braces to wear as needed or when I run. Bruises on my body, stay about 8 weeks where on normal people, just a few days. I even get bruises from fire ant bites.

Both boys have had complete knee reconstructions, at age 16 and age 26. We know we will be facing knee and hip replacements as we age. This condition affects our eyes, our teeth, and pretty much our whole body. Most people with hEDS also have Fibromyalgia, chronic fatigue, migraines, and more.

Knowing that you have a chronic illness with no cure is a hard pill to swallow. However, I try not to let it run my life. I deal with the pain and take Advil with me everywhere. There are days, I hurt so much all over I cannot get off the couch. Many physicians have not ever heard of EDS and many do not believe the patient and think they are hypochondriacs. Family members also doubt us (not mine), but people that I have met in online support groups. We started calling ourselves Zebras because in Med School, thewhy the zebra students are taught to that when you hear hooves, think horses, not Zebras. In medicine, the term Zebra is given to a rare disease or condition. That is how we became known as medical Zebras. Because of the complex nature of our disorder, we are followed by primary care, rheumatologist, geneticist, cardiologist, physical therapist, gastroenterologist, urologists, neurologists and many more specialists as things arise. Some of the friends I have made in my support group are already on disability at 22 and 32 years of age, so I feel blessed that as of right now, my joints have tightened up, I can deal with the pain and that thank God, we do not have the vascular type. I thank God everyday that my boys otherwise are healthy and that Corey’s doing much better and is in great physical shape.

eds scoreSo, the next time you see a contortionist on America’s Got Talent, more than likely, they have Hypermobile Ehlers-Danlos Syndrome. And, if you see someone parked in a handicap space get out and they can walk (just slowly) or is young and, in a wheelchair, —do not judge. Not all disabilities are visible. Because of so many people in the medical field not knowing or even understanding EDS, awareness needs to be widespread globally. Fortunately, May is EDS Awareness month and with numerous online support groups on social media, we are getting the awareness out on what this disorder is. What we need most is for our physicians to believe our symptoms and not dismiss us, or think we are hypochondriacs. There are genetic markers for vEDS, so I am not sure why medical professionals are not believing genetic testing.

eds meme

Summer Fun

By Lisa Baker

Hope you are all having a great summer.  We have had quite a few activities already. At this point we have Dad on hospice care.  He continues to be aggressive at times, however, changing his medication has helped some. My last visit with him I stayed exactly 12 minutes.  He was busy trying to take the closet doors down in his room.  Of course, without any tools he wasn’t going to get that project done, but he had no time for me at all. I tried to get him to sit down and visit with me.  He sat for one minute and was back up working on the closet doors, so I left. He has lost weight and is now wearing pull ups most of the time.  Hospice helps out by providing the pull ups and his medications among other things.

pic 1_fallen limbDuring a bad storm a week or so ago, we lost electricity.  We live close to Dreher Island State Park. By that evening my husband decided we would go to a motel for the night. I’m not sure exactly when our electricity came back on, but when we got home Sunday morning it was on. It’s amazing we didn’t have a tremendous amount of limbs down in the yard.

That afternoon, I went out to take some pictures. Our yard has several areas that are rocky and uneven.  I somehow managed to fall right on the rocks. Yes, I had shorts on, so I really hurt my knees, especially the left one.  They are all scraped and scabbed over. I also sprained my right wrist and managed to hit the side of my head, breaking my glasses.pic 2_sprained wrist

I hurt so bad that I told my husband to take me to urgent care. Thank God nothing was broken. I have never hurt so bad in my life. The doctor gave me a work excuse for the whole week and I hurt enough that I followed doctor’s orders. I’m still sore even this week, but not as bad as last week. I’m slowly healing.

pic 3_Lisa and husbandOur summer has been not so much fun but full of adventure for sure. Through it all, my amazing husband continues to be my rock.  He always supports me in everything I do. 

Make memories and have a safe summer!

Lisa 

Wrapping Up Celiac Awareness Month

By Rachel Sircy

Well, May 2019 has come and gone. It’s no longer Celiac Awareness Month, but I would encourage each of you who either have celiac disease or know someone who has celiac to continue to spread the word. It’s a real issue and it should be taken seriously.

My post this time will be an extremely short one (for me), because my husband and I have just moved and we’ve also had family in town for the Memorial Day holiday. I managed to stay completely gluten free for the holiday, and I realized this past Memorial Day that staying gluten free is becoming very do-able. Of course, it’s still a matter of reading labels very carefully and also of cooking your own food, or eating food cooked by someone you trust – I must here give a shout out to my mother-in-law who is so careful to make sure I have plenty to eat, even when she’s cooking to feed a large gluten-eating crowd.

Let me end this month with a hopeful note: we are farther along in medical research and in the ease of a gluten free lifestyle than we’ve ever been! Just today while grocery shopping, I came across fresh gluten free linguine and fettuccine at very affordable prices at Aldi. Later, by random chance, I stopped by a Food Lion store that I don’tFood_Lion_logo.svg 2 usually shop at only to find that they had a huge gluten free section. Food Lion isn’t typically a store I shop at because many of them don’t carry a large selection of gluten free items, but at the Food Lion in the Three Fountains area of West Columbia I stumbled upon a vast array of Schar products including: baguettes, ciabatta rolls, graham crackers (the Schar graham style cracker is my absolute favorite), Gillian’s brand croutons, Amy’s microwavable macaroni and cheese cups. It was a treasure trove. I will be going out of my way to visit that Food Lion again. So many stores are stepping up to meet the needs of the gluten intolerant. We are in a good place, and I believe it’s only going to get better from here. So, head out there and look for some GF hamburger and hot dog buns and gluten-2984643_1280enjoy your summer! (Just FYI: Aldi runs GF hamburger/hot dog buns as a summer seasonal item, though they tend to run out quickly, so if you see them there, get as many packs as you can afford. Also, that Food Lion in West Columbia had Schar hot dog buns)

God is good!

By Lisa Baker 

Hi everyone,

Yes God is so very good isn’t He. Let me explain…

 

With everything that has happened in the last few months there are still blessings to be had. Mom has passed and I have had some tough days almost immediately. About a week later was her birthday and then Mother’s Day. It’s been a hard few months. My son and his wife are expecting and their due date was May 19th.  My daughter in law started having high blood pressure, so they admitted her to keep a close watch on her. They decided to induce.  Their sweet baby boy was born in the very early hours of Mother’s Day.  What a blessing.  

pic with baby

No way can you top Mother’s Day with anything else.  Meet my handsome and very precious grandson, Baylor.  I’m so in love! God took a holiday that would have been very tearful and gave us a brand new reason to celebrate and give thanks! In other areas, dad yet again has been sent to the ER.  He was very aggressive, kicking and punching a few residents.  The ER basically just let him sleep and did not run any tests. They sent him back to his facility.  The nurse was going to try to get him to give her a urine specimen so it could be tested for a UTI.

 

dementia picWe are still having our own ups and downs dealing with the loss of Mom.  Some days are great.  Others not so much.  I’ve had a few dreams with her in them.  I have recently gotten her life insurance in and have paid her bill at the funeral home.  I have also gone to Probate court to handle her affairs and file her will.

 

Sometimes I will get ticked off easily over little things it seems.  Thank God for my amazing husband, Carl.  Somehow he knows just what to say or do to help me out.  He is a true blessing. Then my sweet new grandbaby, Baylor, makes all seem right with the world.second pic with baby 

So now our next step will be to pick out and pay for a headstone to mark Mom’s grave. One that will have both Mom and Dad’s name on it so later all we will have to do is get dad’s date of death engraved on it. I will let you know how that goes at a later date.

death changes nothing quote

 

So until next time, make memories!

 

Easy Come, Easy Go…Does Not Apply Within the Diet World!

By Marianna Boyce

I texted an accountability update to my sister before church recently.  With ten more pounds to lose, I’m still pleased with my current weight of 145 pounds.  Cindy constantly makes me laugh, so I thought I’d pass a smile onto you.  The screenshots of our conversation are quite comical, but they certainly ring true for most of us.  Her spontaneous ending remark is credited with renaming this blog post.

When Every Woman Blog published my post, “New Year…New You…No Dieting,a couple of months ago, a coworker and sweet friend shared it with others.  What Neya didn’t share was that she implemented this plan for herself.  She was a sneaky secret keeper—until she couldn’t hide it any longer.

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A few weeks into the new year, I noticed she was losing weight.  Unbeknownst to me, she was following some of the tidbits of advice I gave in my first blog post of 2019.  She chose the “My Net Diary” app instead of “Lose It.”  We are having a ton of fun on our journey so far, but when our calorie intake exceeds our limit, we agree it is detrimental to our psyche.  Nothing can be done once the choice has been made to eat the burger, fries, chocolate cake—or all three.  Other than laughing about it, our secret is moving on and making better choices the remainder of the day.

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Neya is a beautiful new mom.  After sweet baby Mason was born, she weighed in at 234 pounds.  Having lost twelve pounds since the first of the year, she currently weighs in at 222 pounds.

For every good weight loss plan, there is an exercise program to match.  Being young and vibrant, Neya is signing up for a gym membership.  I’m so proud of her for taking steps to improve her mental and physical well-being.  A healthy mama is a happy mama.

Regrettably, I approach exercise from a different angle.  In the past, I always enjoyed a challenging workout, but now shudder at the thought of it.  Rheumatoid arthritis and similar illnesses take a toll on the human body.  Exhaustion and pain typically rule the day.  My pain levels are now mostly tolerable, but I cannot subject my joints to workouts I accomplished in the past.  Since daylight savings time has ended, my plan is to simply enjoy an evening walk in my neighborhood at least three times a week.

It’s not as easy as it used to be, but I resolve losing the last ten pesky pounds one small step at at time.  Doing something is better than nothing at all.

I will update you on our journey in a future post.  Hopefully, we will be reporting positive results.  How are your health and wellness goals?  Do you need a fresh start?  There’s no shame if you do.  It’s never a “one size fits all” situation.  Simply do what’s best for you!

Refocus, rebalance, restart—because you’re worth it! 

Those Wintertime Blues

By: Marianna Boyce

Have you checked in on your friends and family lately?  It’s important to ask those close to us how they’re doing periodically, especially after the holidays.  We never know what someone is going through.  They may seem fine on the outside but could be experiencing sadness and chaos on the inside.

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Speaking of sadness, have you ever heard about symptoms of seasonal affective disorder or SAD?  Our shortened winter days make for very long nights.  You are most likely affected if you start to feel sad or depressed in late fall carrying through the winter.  We crave more daylight hours and can hardly wait until Daylight Savings Time begins.  This year, the day for those wintertime blues to magically disappear is March 10, 2019.

According to mayoclinic.org, symptoms of seasonal affective disorder are as follows:

  • Feeling depressed most of the day, nearly every day✅
  • Losing interest in activities once enjoyed✅
  • Having problems sleeping✅
  • Changes in appetite and weight✅
  • Having very low energy✅
  • Easily agitated✅
  • Difficulty concentrating✅
  • Feeling of hopelessness or unworthiness✅

I immediately recognized all these symptoms, but not for seasonal affective disorder.  Instead, I recognized them in relation to rheumatoid arthritis (RA).  Add daily chronic intense joint pain to this list and VOILA!  That was me in 2016!  Who knew?  Not me!  I was totally blindsided and clueless.  It took about a year and a half but with the help of a great rheumatologist here at LMC, I am feeling somewhat better.

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Words cannot describe the difficulty one deals with when something so mentally and physically draining leaves such a lingering adverse effect.  Whether it was SAD or solely RA, these symptoms changed my psyche to the core.  I had to delve deep to bring about self-help and healing to my body, soul, and mind.

If you need only a long sunshiny perfect spring day to uplift your spirit, you have a little longer to wait.  In the meantime, try these simple home remedies to help in your quest for a quick pick me up.

  • Open all your blinds during the day. Make your environment brighter and “sun shinier.”
  • Exercise regularly, even if it’s only 10-15 minutes. A mid morning walk would be perfect!  Outdoor light is beneficial, even on a cloudy day.
  • Consider eating your lunch outside on milder days. Living in South Carolina, chances are, that could be often!
  • Make minor changes in your routine. This may be enough to carry you through those wintertime blues.

For me, I chose my reliance and personal relationship with God to guide me through my img_0755 (1)horrible experience with RA.  It was never easy, especially when I felt like God was so far away.  It turns out, He was there the entire time.  Looking back, He was blatantly obvious.

You may choose to seek help with your general or mental health doctor;  this is also a great idea.  My point being, do whatever is necessary in order to just get help, especially if you are depressed and have the last symptom listed for SAD:

  • Thoughts of death or suicide.

I can honestly say I have never experienced this thought, but if you do, you need the most urgent attention!  Awareness is key.  If you or a loved one are having thoughts of suicide, please seek help immediately!  “It’s okay to not be okay.”

National Suicide Prevention Lifeline

1-800-273-TALK (8255)

suicidepreventionlifeline.org