Tag Archives: celiac disease

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.

Why No One Figured Out Food Was Making Me Sick

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.

 

hailflowers

 

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!

 

flowersrevived

 

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.

Catch Up Mondays: How Allergies Prevent a 50 Shades of Grey Life

A Lot of Women around the Pool are Reading the Same Book

Amanda from Celiac and Allergy Adventures featured a blog post with this title.  I loved how she compared allergies and Celiac Disease with the book, 50 Shades of Grey.  For me adding in mold and chemical sensitivities and Amanda has it right on.  I thought I had posted this in 2012 but in searching my past blog posts I only found a few comments and Amanda’s text wasn’t shown.  So for all of you, please visit Amanda’s blog and read this post.

Book Blog Tour: Day 7

I am having a wonderful time and feeling so privileged to be able to share my story on some amazing blogs hosted by equally amazing women.

Today I am honored to be hosted by Molly from based on a sprue story.  I will be answering interview questions that Molly has prepared including what is the funniest thing that has happened during this illness.

I gave up eating wheat and most things gluten when I was told I had to give up oats and wheat because I tested allergic on a blood test not because of a diagnosed celiac disorder.  After years of treatment I am now able to eat those items again.  Recently through meeting Molly over six months ago and learning her story of gluten intolerance, I have begun to try to incorporate more gluten-free recipes into my meals.  I also was not aware back when I was giving up gluten of cross contamination with non-gluten products.  I have learned many things since following Molly.

What I love about based on a sprue story is Molly’s ability to take even a nursery rhyme or children’s story and put a gluten-free or  humorous spin to it.  I think you will enjoy her blog as well as those of the other ladies that have been hosting the book blog tour.

When your child develops your illness.

I recently read a post from Adventures of An Allergic Foodie discussing her own ride with illness and celiac disease.  In her post “Words to Live By” she discusses what it is like when your child follows down the same path.  It is a sensitive post about a mother’s angst of having her son have to deal with celiac disease.

Paying the price for a good time.

Is knowing you might not feel well worth the price to pay for a good time?  Last night members of my graduating class were getting together outdoors.  I knew there would be perfumes, etc.  There was a good breeze going so I thought I would okay.  I didn’t attend my tenth reunion choosing to wait until my 20th.  I didn’t have as much fun as I thought I would have then.  I was overweight and wearing braces on my teeth.  I vowed that by the 30th, I was going to go and have a good time.

Then my exposure at work changed that.  I have missed the last two reunions and reunion pre-parties.

I managed well enough with some of the fragrances (or so I thought) because the breeze (ok it was more windy than breezy) was keeping the worst of it away from me.  Then towards the end of my evening, the cigars came out.  I was fine as long as everyone was behind me and the wind carried the smoke away but when everyone changed spots the wind carried it right to me.  I immediately grabbed my charcoal mask, finished my conversation, and decided it was time to leave.  By the time I got home, my chest was uncomfortable, my eyes were itching and burning and I just didn’t feel well.  I took Vitamin C, put drops in my eyes and eventually gave myself a histamine injection and went to bed.

This morning my eyes are still a little itchy, my brain is a little off kilter, my arm muscles are aching (but they were a little achy yesterday before I went) and my legs just plain hurt.

Knowing what I know would I have attempted to go?  Yes!  It was wonderful seeing friends from high school (some I hadn’t seen since the 20th reunion and some I hadn’t seen since high school graduation).  I may have tried to stay further away from everyone and visit from afar but that wasn’t any fun.  So, I am resting and letting my body calm down today.

I learned while visiting with a classmate that she can’t tolerate gluten, is lactose intolerant and the fragrance department in stores cause confusion.  I do not like to hear that others suffer with similar sensitivities.  No matter how severe the sensitivity, their lives have been impacted much as mine has been impacted.  I promised to share my blog and information I have gained about gluten intolerance and celiac disease.  So while I am under the weather today, I was able to touch someone with my story and in turn learn of hers.

Have you chosen to participate in an activity (indoors or out) knowing you my not feel well after?  Was it worth it to you?

Camp Celiac

camp celiac

I just saw this posted on Chebe’s Facebook page and thought I would share it.  This particular camp is in Rhode Island:  http://campceliac.org.

I don’t know if there are any others in the United States or in other countries.  Does anyone know of any in your area?