Share Your Gluten-Free Story: Meet Cindy!

This is a guest post by Cindy.

We celebrated my daughter’s first birthday in December. She was filled out and such a healthy girl at the time! Just after the first of this year, we moved from Virginia to Texas to live with my mother-in-law while my husband transitioned out of the Navy and looked for a job. Within a few weeks, we began to notice some changes in little Sophie. She was very fussy and seemed to keep having runny diapers, though some were normal. I also began noticing that her arms and legs were getting smaller, but just slightly, and her belly began getting very round and slightly distended. Around this time, she also has the first of her molars come through so we thought it was probably just teething. February 1, I knew something else was wrong. We took her to the doctor and found out she had an ear infection. I felt so relieved to know that it was known and could be treated! We started her on medicine. Unfortunately, she wasn’t getting better but worse. We changed medicines and still didn’t really see any improvement. We all just assumed it was some problems with her teething. All the while we noticed that she was forming this larger-than-normal belly, which at the time was kind of cute. Little did we know what it was actually signifying.

The diarrhea and fussiness continued into mid-February. I began logging everything she ate and drank thinking it was something with her diet causing problems. I also tried a few other things like switching dish soap thinking she was having a reaction to a different one we were using. I suspected more of an intolerance for milk and milk products when she was up at 3 am one night throwing up after a very cheesy dinner. A few more days passed and while she wasn’t throwing up, she was still very fussy, not sleeping well at all, still had diarrhea, and was still getting smaller. Mainly just her arms and legs were getting smaller, but everyone was just saying it was because she was moving around more since she was walking more then. I knew something was still wrong with Sophie so we took her back to the doctor thinking maybe her ear infection was still there. On February 14, two weeks after her last appointment, she had lost a pound when she was weighed. After her losing weight at 3 months old (completely unrelated to Celiac, more to do with low milk supply), this was alarming to me. We presented the doctor with her symptoms – large belly, smaller arms and legs, diarrhea, extra fussiness – and after an examination, determined it was probably due to the infection and medicine still working its way out of her body. He advised us to set up an appointment a week later and if she was still having problems, he would run some labs and try to determine what was going on.

We set up an appointment for her for Feb. 21, but we moved for my husband’s new job on Feb. 20 so we canceled the appointment. Once we moved, Sophie seemed to get worse. She was so fussy I had a hard time doing anything because she would cry so much if I put her down. She didn’t want to eat half the time and still wasn’t sleeping well. The diarrhea just seemed like it was never going to end. There were days I had to change not only her diaper, but also her pants and socks and clean up her shoes and floor. It was very upsetting to me to not know what was wrong with my child. She had 2 more molars and a lower front tooth come in as well during this time, so teething still seemed possible, but I felt deep down that it had to be something more.

I began looking up symptoms of lactose intolerance and cutting down on dairy to see if there would be a difference. It became obvious to me this was a legitimate concern when she went a day and a half without anything dairy and was in the best mood, which quickly changed when I gave her a meal with a rather large amount of cheese incorporated. The rest of the evening, she was EXTREMELY fussy and back to wanting to just be held again. At this point, I realized that we needed to do a dairy-free diet to see if the problems disappeared.

March 7th I decided to begin a strict no-dairy/lactose diet. That same morning, something still wasn’t right. I’m not sure what led me exactly to do it (besides the Lord’s leading), but I made her a doctor’s appointment with what I believe to be the only pediatrician in our town of about 2800. This doctor believed there was more than teething going on, with her being the same weight as she was on February 14th being a major factor. She supported going dairy-free, but also felt that we would have to see a GI doctor to find out more of what was causing her to lose weight. She ordered some lab work to be done. By this time, you could begin to see the tops of her ribs easily and I had needed to go down a size in diapers. Some labs we received back quickly, which showed blood in her stool, low protein levels, and the x-ray showing a lot of stool in her bowels (despite her diarrhea). There were tests ran for Celiac Disease at this time, but the results would take a few days to get back.

After TONS of research online of Sophie’s symptoms, I realized that she was showing signs of Celiac Disease so I began a gluten-free diet on March 9th to go along with her dairy-free diet. The dairy-free diet stopped her diarrhea. She began asking for food ALL THE TIME and would cry if she wasn’t eating. It was like she was always starving. March 14th, I took her for a follow-up appointment, where we discovered she had lost about a pound in one week. We also had received the results of the Celiac tests, which were all showing high, indicating there was a good chance she has it though blood test can’t determine for sure, especially since she was only 15 months old. I called to make an appointment that day with the GI doctor in Austin. The earliest they had was April 3rd. Because of all she was going through, they placed her at the top of the cancellation list. We also had to put her back on a gluten so that they could run some more tests for Celiac Disease, which requires the effects on gluten on her body. We didn’t know this when we first began the gluten-free diet. So, I put her back on gluten on a Wednesday and asked everyone to pray that I would receive a call Thursday afternoon about a cancellation on Friday. Praise the Lord there was indeed a call on Thursday about a cancellation on Friday!

The appointment Friday didn’t do much more than examine her and set her up for an endoscopy and biopsy on her small intestine the following Monday. We continued on our dairy-free, just slightly glutened diet and took her for her endoscopy on Monday. The procedure was shorter than it took for her to come out of the anesthesia, but we made it through. The GI doctor informed us that we were welcome to start back up on the gluten-free diet, which we did that day. Two days later, on March 21, we received the biopsy results, giving confirmation that Sophie did indeed have Celiac Disease.

Finally finding out that we knew exactly what was going on with our precious baby girl was such a relief that words cannot explain. Since finding out about her diagnosis, we have done our best to keep all gluten out of her system. She still has some bad days as we are still trying to figure out what all she can eat, but she is so much better than she was 2 months ago!! It took a few weeks for her to begin gaining weight back, but she is now growing quickly. I have returned to the diaper size I was at before she began losing weight so dramatically and have had to go up a size in clothing. She is back on the growth charts and is quickly catching up to where she was percentage-wise. Her attitude is so much different now as well. She is so happy, funny, creative, and learning so much! She was so idle and uninterested in anything while she was sick, so she really is like a different girl now.

As I think about how she’ll never eat many things since she was only 15 months when she was diagnosed, I find comfort knowing that this will just always be how life is for her. She won’t crave foods that make her sick because she doesn’t know them. She won’t miss eating baby snacks with gluten in them because she won’t remember them. She won’t have to relearn how to cook when she’s a teenager or an adult because she’ll only learn how to cook gluten-free. While it was difficult to read her symptoms, see her go through that at such a young age, and try to pay close attention to when I need to know something she can’t express in words to me quite yet, it was actually great to find out when she was so young. I hope to only bring awareness about Celiac Disease to the community and the medical field so that they can learn to spot the symptoms and correctly diagnose those with Celiac. Thank you for allowing me to share my daughter’s story!


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Linnaea!

This is a guest post by Linnaea.

I’m a fourteen year old girl living with six sometimes annoying sisters on a ranch where my family raises organic grass-fed beef cattle. My sisters and I are all very active. We ride, rope (sort of), work cattle, feed our many pets, and train horses. It’s important to be healthy so that we can do all these things.

Which is why we eat gluten-free.

Before we started eating gluten-free, we all felt very sick. My third-to-youngest sister felt the worst, since she reacts the most to gluten. She was very quiet, pale, and languid all the time. People suggested that another one of my sisters was autistic. My Dad, too, reacts very strongly to gluten and was really sick. He went to numerous doctors but got the same answer from them all: They didn’t know. No one really knew about Celiac disease then.

There didn’t seem to be very much we could do.

Then we got a book in the mail. It was a book describing a diet. We hadn’t ordered it, but the sender thought we would be interested because the author recommended eating grass-fed beef.

My Dad tried it. He was ready to do anything to stop feeling so sick. The diet eliminated everything except meat and vegetables. He immediately started to feel way better.

He started adding things back in. As soon as he got to the gluten, all his symptoms came back.

That was it. The whole family dropped gluten. We all felt better, and we all knew that we never wanted to eat gluten again.

I had enjoyed baking ever since I was around six years old. I would help Mom in the kitchen, mixing, pouring, and, of course, enjoying the products of my labors. When we started eating gluten-free, there was a new reason to cook. My sisters and I wanted cake. And pizza. And brownies.

Gluten-Free Chocolate Roll

My parents bought some gluten-free flours to experiment with, and I started baking things. My Mom bought me some gluten-free cookbooks. I followed the recipes. I’d get up in the morning sometimes and make pancakes for all nine of us. I learned to bake in huge batches. My sisters could down a lot of pancakes when they felt like it.

After I learned what combinations worked in gluten free baking. I started making up my own recipes. I had some disasters. Once I used straight bean flour in a batch of biscuits. With the bean flour was water, oil, an egg, and a few more odds and ends. The ‘biscuits’ went flat in the pan and spread out into one very large biscuit. And then they stuck to the pan.

We left those out on the front steps for a few days. The cats took care of ‘em.

I haven’t baked with bean flour since, even though bean flour wasn’t the only reason things went wrong.

I also made cinnamon rolls. These didn’t turn out melted and stuck to the pan like the biscuits, but they were hard as rocks. The butter didn’t soak in real well. Another failure.

Eventually, I learned to turn my oven up and to add a little baking powder to the mix.

They came out better after that.

My attempts with yeast were utter failures, until I found a recipe in a cookbook. I made a few adjustments so it would work for our old bread-maker. We hadn’t used that bread-maker since we’d made wheat breads, and there were still a few crumbs in the bottom. I spent about two hours making sure it was clean and free of contamination.

I made the bread. It came out perfect. It has now become my all-purpose sandwich bread.

Gluten-Free Breadmaker Bread

I’ve developed a bunch more recipes since then and continue to enjoy gluten-free baking.

When my family first started the gluten-free diet, there didn’t seem to be a lot we could eat. The grocery store was full of things that were off limits. But, over the years we’ve learned what to watch out for, and now we rarely get contaminated. Eating gluten-free means our family eats much healthier than typical Americans. We eat a lot of meat, vegetables, and fruit, and when we want pizza, I know how to make one!

Linnaea blogs about her gluten-free adventures in the kitchen at I Am Gluten Free!


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Mandy!

This is a guest post by Mandy.

Most sources say that the average time from onset of symptoms to diagnosis of celiac is six to ten years. Though I have not been biopsied and diagnosed with celiac, I have enough symptoms to merit going off gluten for life. My story and realization took six years from the onset of symptoms.

It is said that sometimes life-changing events or sickness can trigger celiac or gluten intolerance in a person. I’m not really sure what my trigger was; it could have been stress or a stomach bug, which my first doctor said was my only problem. Unfortunately, this stomach bug would not go away. My story started rather dramatically when my brother-in-law took me to the ER with heart attack symptoms. I did, in fact, have irregular EKGs which merited staying in the hospital overnight on heart monitors. After some monitoring and additional tests, doctors decided my heart was fine and called my little issue “stress”.

From that point on, my symptoms seemed to multiply. I experienced digestive problems, a constant foggy head, dizziness, muscle aches, multiple sinus infections, and bronchitis for weeks. There were days that I could barely get out of bed. In fact, I spent about three weeks in bed, unable to do anything. My doctor also put me on a beta blocker to slow my heart rate. (That doesn’t seem too healthy for a twenty-five-year-old, now does it?)

Unfortunately, nothing helped. I went off caffeine. I underwent more tests. I accumulated huge medical bills trying to find out why I felt so awful all the time. Further heart tests, kidney tests, a colonoscopy, an upper GI test, blood work, and samples galore did not help to diagnose my problem. Every test came back normal. I saw heart doctors, gastroenterologists, even a TMJ specialist. Doctors just gave me another medicine for heartburn, dizziness, and my constant nausea. I heard things like, “Oh, you have anxiety! Why don’t you take something for that?” ”We think you must have IBS” (IBS, I learned, is code for “we don’t know”).

More time passed with no real answers.

(One positive during this time was becoming reacquainted with a friend from college who I married in 2006. Yes, he wanted to marry me even with all my issues. He is a good man! I did have some better moments after marriage but never felt great. I already knew, from a previous allergy skin test, that I have multiple seasonal and outdoor allergies to things like trees, dirt, grass…you know, earth. )

No one ever mentioned the possibility of a gluten intolerance or celiac disease.

I learned to deal with feeling so awful all the time. I felt nauseated, dizzy, and exhausted every single day. Doing simple tasks took a great deal of effort. I remember sitting on the couch every night after dinner and falling asleep. I felt drugged.

My issues came to a head in January 2010 during an episode of vertigo (dizziness). When I went to the clinic, I found out that I also had very low vitamin D levels and a low white blood cell count. (I later learned vitamin deficiencies can be a sign of celiac.) I battled the vertigo for three months and still did not feel well. This led me to find a good family doctor (finally!) who was very helpful and caring. She really seemed to want to help me find some answers. She did some blood tests as well and found that my white blood cells had some abnormalities. She was concerned that I could have an immune disorder or some type of cancer. After seeing a blood specialist at the cancer center in my town, the only answer they had was, “It’s idiopathic.” (Another “I don’t know.”)

Instead of giving up, my doctor decided to order a food panel test for me. I had suspicions at this time from my own research that my problems were food related and I suspected gluten, so I stopped eating it and ate other things instead. I waited five weeks to get the results of my blood test. I was shocked to find out that I had positive results for allergies to oats, potatoes, egg whites, and tomatoes. These were some of my favorites, and much of what I had been eating the past 5 weeks. AUGGGHHH! No wonder I felt so badly!

So, in the summer of 2010, I had to drastically alter my diet to exclude oats, potatoes, egg whites, and tomatoes. Additionally, I still felt affected by the gluten, so it was added to my no-no list. My doctor decided it wasn’t necessary to do further testing, since I was already off gluten, but she advised me to pay close attention and to not eat anything containing my food allergies or gluten, as they would continue to cause me problems if I ate them. (I distinctly remember the last time I had gluten as a conscious choice…October 28, 2010. My husband took me to a yummy pizza restaurant for my birthday. Oh, was it good! And I felt like I had the flu for about two weeks afterwards. Not so good!)

The difference since removing these foods from my diet has been amazing! There were seriously times I thought that I must surely be dying based on how awful I felt daily. Now, to actually have entire days and weeks where I felt like I could function with the rest of humanity– awesome! Although things are going much better, I cannot say that I have been without moments of feeling less than stellar, there is a definitely a learning curve. Just a few months ago I found that a medicine I just started taking used potato as filler/inactive ingredient. After flu-like symptoms hit me, I researched the ingredient list and found the culprit. I now know to never assume with anything. Always check before ingesting.

My best advice is to find a doctor you trust, but ultimately, YOU are responsible for your own health. I am happy to report that I have been much healthier since I changed my diet. My husband and I have definitely eaten much healthier for the past two years. What was hard at the outset is now second-nature to me (and my husband, bless him).

Finally, dealing with food allergies and gluten intolerance (at the least, possibly celiac) couldn’t have come at a better time. This past November, my husband and I had our first baby. I am so thankful that I am feeling better since I have a beautiful baby girl to care for (and my husband!). I hope my story encourages others who feel like there is no answer and no hope to ever feel better.

I was that person. There is hope. Don’t give up. Keep pushing a little bit more for answers.

Because of my personal experience, my love of cooking, and my desire to know more about food allergies, I felt like it was a great outlet to start my own blog where my goal is to give you helpful tips, delicious recipes, and frugal advice I have learned while dealing with my own food allergies. Come visit me over at http://www.sensitiveandcentsible.com. I would love to have you stop by and stay a while!

Would you like to share you Gluten-Free Story? Go here for more information!


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Michelle!

It all started with a diaper rash.  Diaper rash, and two very clueless first time parents.

As soon as Barrett had passed all the meconium his bowel movements were very acidic and left burns on my preemie baby’s bottom. We would rinse the football-sized child in the sink, gently pat him dry, and then lay him on his tummy by the fireplace to air out. Nothing helped. Brannon and I weren’t overly concerned because we had seen lots of diaper rash in our lives. But it continued to get worse so we took him to a pediatrician–who recommended we test him for Giardia. How on earth would a newborn get Giardia? But “doctor knows best” so we went ahead with the test. No Giardia.

Next time we asked for a different doctor. He chuckled at the “paranoid” first time parents and gave us a lifetime supply of Butt Paste samples. (For the record, those didn’t work.) In the meantime the poor little guy did not like to be touched or cuddled and had severe colic.

We went to a new doctor who at least helped us with the rash. He quickly diagnosed it as an acid burn. He recommended treating the rash with A&D for burns and switching Barrett to soy formula. The A&D worked great for healing the rash, but not for preventing it. A baby forum gave us the idea of mixing Mylanta in with it and that solved the prevention problem. But these efforts only masked the symptoms and the soy formula did not make a difference.

In the meantime Barrett’ belly started to bloat. He would eat, and eat, and eat, and still be hungry, yet his weight percentile dropped from the 27th to the 9th. “He’s just more active,” said the doctor. Um, no. He was actually a late bloomer in the physical realm.

The doctor brushed off my concerns so I went to Dr. Google. Using information I found online I started requesting some tests and although he dragged his feet, the doctor ordered them. I still vividly remember the day I drove two hours to have Barrett tested for Cystic Fibrosis. He curled up in pain and whimpered “stomach hurts” the whole way. I cried along with my son and imagined what it would mean if this test was positive.  Fortunately, that test came up negative but it meant we were back to the drawing board.

Eventually Barrett’s bowel movements became extremely strong-smelling and it looked as though he had been eating sand. We went back to Dr. Google and entered “sandy bowel movement” which led us straight to the discussion board at Celiac.com. The information we found indicated that the “sand” was a sign of intestinal damage. Barrett had many of the classic symptoms of Celiac, and we also realized that my husband’s sister had just been diagnosed with it.

We went back our doctor who doubtfully ordered a Celiac blood test. Negative. He sent us to the allergist. “Based on testing there should be no food restrictions in his diet.” I’m sure the doctor and the allergist thought we were crazy by this point. But Dr. Google informed us that the blood tests are not very reliable, especially in children under age 5. We decided to forget the clinical testing and go straight to the gluten-free diet.

Within a week the rashes, the sand, and the whimpers started to go away. My son was finally starting to be happy! We considered doing a biopsy to get conclusive clinical evidence but in order to do that we would have had to feed them gluten for a few weeks. Seriously? Why would I do something to intentionally damage my child in order to prove that it damaged my child? The evidence was there. I opted not to do the biopsy.

However, Barrett started relapse and we could not figure out what the problem was. We found Enterolab, a company that does stool testing and research to find connections between gluten intolerance and other autoimmune diseases. It was expensive, but worth every penny. The stool test revealed that he was also sensitive to soy and milk. Once we removed those from his diet Barrett flourished!

But the story doesn’t end there. A little sister came into the picture just after we figured out what was bothering Barrett. Naturally we avoided feeding her gluten and milk for the first year and never gave her a drop of formula. We watched her like a hawk when we introduced gluten and of course, she reacted to it. I started to wonder if there was a stronger connection than just my husband’s sister having Celiac. I put myself on a gluten free diet.

It was amazing! I realized that the slight discomfort I have had my entire life after eating wasn’t normal. Suddenly I had energy and I felt better than I ever had before.

Now we have a third child—a son—who also shows sensitivity to gluten, milk, and other foods.  Sometimes it’s a little frustrating to face the fact that all of my children will likely have to deal with digestive problems. But really it isn’t that bad. In fact, we eat much healthier because of it. We eat fewer processed foods, we go out to eat less, we buy more whole foods and prepare from scratch. Once you get into a routine it really isn’t any different from normal food preparation.  And now there are so many amazing gluten-free bloggers and products out there that you can eat and do just about anything. In fact, I have written a children’s book of my own to help kids like Barrett celebrate his unique situation.

So if you suspect you may be gluten intolerant don’t be discouraged. There is a whole community out there waiting to help you along the journey!

Michelle L. King is the author of “Barrett’s Unusual Ice Cream Party”, and “Mr. Percy’s Mysterious Glasses”. She has a degree in Early Childhood Education and is a former Kindergarten teacher. She lives in Logan, Utah with her husband and three children. You can find her work at http://www.MichelleLKing.com


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Dee!

This is a guest post by Dee.

My 2 sons displayed symptoms of food allergy early in their lives, so I have been on the journey of eating “alternatively” for a while. We focused on avoiding dairy mostly and were slowly working towards more “whole” & “organic” eating.

My youngest son complained of stomach aches from time to time, but I knew we had to take it seriously when I saw him at age 18, stop in his tracks doubled-over in pain & declare he couldn’t take the summer trip he had so been looking forward to. We had tried a few things, like eating yeast-free since that had been a problem for me earlier in my life, but still the pain continued.

I had been doing research on the internet & found some of his symptoms talked about w/people who were eating gluten free as their cure. So we started eliminating gluten, & he began to feel some better. I then heard about the Fine Clinic that would test patients without a doctor middle-man. The money was well worth the answers: severe gluten intolerance, with markers from both parents. We had pressure from family & friends to “get tested” so he went to a gastroenterologist, who ran blood tests as well as internal scans. No celiac, no anything, except for slight inflammation in his colon. The doctor wanted to put him on a prescription medicine, which neither my son, nor I, wanted to do.

As more time passed, and we became more careful about cross-contamination, and hidden gluten, he became better & better. I joined him in the diet, partly for encouragement for him & partly because of the DNA results. (My husband still refuses to eat GF though!) I found that my arthritis has completely disappeared by eating GF, and I know pretty quickly if I eat something w/hidden gluten because my pain returns.

Both of my sons are foodies, and began making GF recipes because what we found in the stores was so bad! They had a GF business for about 2 years in the local Farmers Market before they moved away. My oldest son seems to have some gluten intolerance, but has not embraced eating GF completely. My youngest son also has some other food allergies, but eating Gluten Free has definitely made a wonderful difference in his life. He is now a chef at a Youth Camp, & is able to fix alternative meals for those who need it.


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Lisa!

This is a guest post by Lisa.

My name is Lisa DeZolt and nine years ago, at the age of 47, I was diagnosed with Celiac Disease. When I was a child, I would constantly complain of bad stomach aches, especially after eating. It actually became a joke in the family; they would say it was because I didn’t want to eat.

As I got older into my teenage years, I continued with terrible stomach issues, but doctors could never figure out what was wrong with me. As the years went by, I settled into the fact that I had a “nervous stomach”. In my 30’s after many attempts to become pregnant, my doctor told me I could not have children although all the infertility tests I had showed no real problems. My husband and I adopted an adorable 20 month old boy from Hong Kong, our son Kit, in 1991. During these years of raising our son, I started to feel fatigue like I never experienced before along with migraines, muscle and joint pain, constant hunger pains, and nightmares with trouble sleeping. I also started losing weight no matter how much I ate. In ‘2000’, I underwent a surgery that took months to recoup from and that is when my health spun out of control. I would swing from diarrhea to constipation and back again to diarrhea. I went doctor to doctor trying to get answers to my medical problems. I even had one doctor ask me if I was Anorexic. At this point, I constantly had a swollen abdomen and felt bloated all the time and weighed just 89lbs.

On Christmas Eve of ‘2003’, I was admitted into the hospital because I had lost so much weight and literally felt like I was dying. I spent a week in the hospital on a feeding tube and actually gained some weight, so I was sent home still with no real answers. A couple of weeks after that, back to feeling worse than ever, is when I read an article in ‘Women’s Day’ magazine about a woman who had Celiac Disease; her symptoms almost mirrored mine. I immediately made an appointment with my Gastroenterologist and showed him the article. I had a blood test done and it was determined that I did suffer from Celiac Disease. All the pieces to the puzzle finally came together. The years of stomach pain, bloating, migraines, sleepless nights, nightmares, and even my infertility problems were explained. I am happy to say, I’m feeling much better these days now that I eat strictly gluten free, and I actually weigh over 100lbs now which is an accomplishment for me. Since my diagnosis, my dad, three of my sisters, and several of my nieces and nephews have also been diagnosed with Celiac Disease; so it truly is a gluten-free family affair.

I strongly urge anyone with similar symptoms to mine, get tested for Celiac Disease. It is a simple blood test although sometimes a scope procedure is needed for a true diagnosis. It is my hope by telling my story, that other people will not have to endure years of pain and discomfort like I did before coming gluten free. In closing, I would like to thank my husband for all the years of support, especially in the years leading up to my diagnosis when I was at my worst.

Gluten free for life, Lisa DeZolt


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Annaliese!

This is a guest post by Annaliese.

Joseph was not a fussy baby, but he very well could have been. He had eczema in all his creases (especially behind the knees), but the only place he had the coordination to scratch was on his head. And scratch he did. I clipped his nails, I put mittens on him, but it didn’t help. One day, he woke up with blood all over his face, clothes, and sheets. So, I knew I had to take him to the doctor.

The doctor gave him some antibiotics for infection in his scalp, and some hydrocortisone for the eczema. Some of my friends had suggested that Joseph had food allergies, so I asked the doctor what his thoughts were. He said if I wanted to cut something from my diet, to try taking out wheat first.

I tried to follow a wheat-free diet, and Joseph’s eczema did improve. I still found it really hard, since my favorite foods are breads. I would cheat on the diet at least once a week. 24 hours later, Joseph’s eczema would flare up, and he’d get a bloody diaper rash. After three months, I decided I couldn’t do it anymore, and he would be better off with formula, which would be consistently good.

Except when I gave him the first bottle, he didn’t want it. I pushed him to drink an ounce, and then I noticed that his face was turning red. Within a minute, the redness turned to hives that were almost on top of each other. Thankfully, he never had any trouble breathing, and the hives went down after a while.

To make a long story short, I weaned Joseph to Alimentum, and slowly discovered that he also appeared to react to barley (so we avoid all gluten), soy and nuts. Now that he is two years old, he appears to have grown out of the soy allergy, but he also tests positive to eggs (thankfully, he can tolerate them in baked goods). I’ve had to reinvent my recipes as he’s transitioned to solid foods so that he can eat safely with us, and we’re not limited by cardboard tasting food. I blog about how we’re doing, and try out a new recipe every week at http://thericeoflife.wordpress.com. It’s not easy, but I’m gaining confidence as I learn day by day.


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Paula!

This is a guest post by Paula

I am an almost 31 year old mom of two wonderful boys. My older son is 7 years old and my younger one is 4. I am a scientist in the biotech field by day and an avid cook and mom the rest of the time. My story starts when I was little. I have recollections of horrid pain (now I know it was heartburn) after many a meal, and many other meals spent in the bathroom with horrible stomach aches. And I thought this was normal, I really did. I don’t remember a time that I didn’t feel crappy after eating. But, I didn’t let my stomach issues keep me down, I had a fun childhood with great memories, I was even an avid soccer player (not that good, but I loved it). But, I remember in 7th or 8th grade my knees started killing me, I could barely walk some days. The doctor basically said it was from playing soccer, gave me some exercises to strengthen my inner quads, and tons of ibuprofen. Shortly after, my stomach pain got horribly worse. The doctor attributed it to the ibuprofen, assumed it was an ulcer, and gave me some medication for it….the pain never went away. I quit both the ibuprofen and the ulcer medication and just dealt with it.

High School came and with it Cross Country and Track, I love it, except for the fact that I threw up after every run…not just the races, but every jog, workout, or whatever physical exertion I did, I was sick and could not hide it from anyone. My cross country couch thought I was just pushing myself as hard as possible for every workout, and he affectionately called it ‘The Paula Thing’–how humiliating for me, he didn’t realize it, but it was. At the beginning of almost every workout he’d say, “Now push yourself as hard as you can, it’s not hard enough, unless you do ‘the Paula thing’.” Really!?! Well, with all of the physical exertion came eating a ton, really, I was constantly eating, I could have easily been putting away 4000 calories a day…and I was skinny and sick. My whole high school career, especially my junior and senior years, were spent in and out of doctor offices. When my family doctor decided he had no idea what was wrong (after diagnosing my with GERD, and that medication not helping), he sent me to a Gastroenterologist. You would think this doctor would be able to figure it out, but I spent years on different concoctions of medications to try to alleviate the symptoms with little or no success. My senior year in high school I had to quit the cross country team half way through the season, none of my friends understood, they thought I was just being a wimp, it was a really painful time for me. I spent what time I wasn’t at school or doing homework, sleeping, I was exhausted, my body was exhausted. And this is how I finished my high school career.

College started, and with it, moving away from home and having to take care of myself. Well, that year I was as at rock bottom, I thought. The Gastroenterologist basically gave up on me and diagnosed me with IBS, gave me a bunch of medicines, again, and once again, they didn’t really help. After a year of the medication, I decided it just wasn’t worth it, and quit taking it. I still was suffering, but I just dealt with it. I got used to the stomach aches, and just went on with my life. I still distinctly remember when my husband asked me to marry him…of course, with the whole asking part, but also because I had one of the worst stomach aches of my life. We had gone to Chili’s for dinner that night, shared an Awesome Blossom (which I don’t think they have anymore, but it’s basically a deep fried onion), and I had the Chicken Caesar Pita with fries….why do I remember this? Because it caused that much pain, over 10 years later I still remember it. As my husband was trying to get the courage to ask me to marry him, I was running to the bathroom, again, and again, and again. Poor guy, at least he knew what he was getting into when he asked me, right?

I have had many more of these horrid stomach aches over the years….laying on the floor in fetal position, because I can’t do anything else. And yet, there was no answers. In early 2004, I began having issues with my menstrual cycle, and went to my family doc at the time. A couple years prior to this, my older sister was diagnosed with a prolactinoma, an adenoma on the pituitary gland that excretes prolactin, and I knew that was what was causing my problem…and it was. So, I was treated with bromocryptine to eliminate the tumor and during that treatment became pregnant with my oldest son. With both of my children, I had good pregnancies, other than horrible morning sickness (surprise, surprise). They both arrived early, my older one came 2 weeks early and weighed in at 8lb 3oz and my younger one arrived 3 weeks early and weighed in at 8lb 15oz. They both had jaundice for about 2 months, I was told it was from my breast milk. Their bilirubin levels were never critical, but they were definitely yellow babies. Both of them had torticollis and both had colic…I look back on the colic and realize it was what I was eating, but no one ever told me to cut out the gluten. I think back on my hormone, pregnancy, and nursing issues and I really believe all of those were related to gluten sensitivity.

My older son was diagnosed with generalized anxiety disorder when he was 4, and was put on prozac. He was not functioning at the time, and it broke my heart, the Prozac did help him reach those milestones he was missing, but it did not seem right to have him on such a strong medicine, but we didn’t know what else to do. My younger son was diagnosed with sensory processing disorder (SPD) at just under 12 months. He has major sensitivities to touch, and has gravitational instabilities. He also had chronic constipation, meaning he could not pass a bowel movement without some sort of help. He was on a regular diet of fiber supplements, miralax, and chewable laxatives, as needed. And the doctors told me that was normal….hmm?

In August 2010, I became ill. At first, I thought I might be pregnant. It was that constant blah feeling of morning sickness, that would come in waves, but would never really go away. So, we waited to see, and nope, I wasn’t pregnant, and I was still sick. So, I called my OB/GYN to have him check my prolactin levels, to see if my prolactinoma came back. He checked and also checked my thyroid, wasn’t either of those, so he sent me to my family doctor. The first thing my family doctor said was that it was depression. What!?! Yes, I was probably depressed, but I knew is wasn’t depression. At this point I had been sick for 3 weeks, with no answers, of course, I would sound helpless! He decided to check my gall bladder, as well, since their was tenderness in the area. After an ultrasound and a HIDA scan (which made be horribly sick), results came back that my gall bladder was just fine. By this point I had been sick for nearly a month, and had lost 10 lbs, I really didn’t have 10 lbs to lose, either. My wonderful mother suggested that maybe it was Celiac Disease, the one thing they have never tested me for in all of the years of being sick. At first, I told her there was no way that it was that, bread wasn’t making me sick…and she said, how do you know? It was very profound to me, because I didn’t know, never once had I cut out breads from my diet. So, when the doctor’s staff called to tell me my gall bladder test results were normal, I told them I needed my blood drawn for Celiac, they did it, and it came back negative. But, literally the moment they drew my blood I stopped eating gluten, and an amazing thing happened. Within 24 hours, I felt better, not 100%, but I was significantly better. After removing the gluten, I was also able to determine that dairy was making me sick as well, so I eliminated that and I felt fantastic!

With my diet change, I realized that this could be the root cause to my boys issues. So, I wanted to remove gluten from their diets as well. I decided we needed to know if it was Celiac’s or not, so we went the pediatrian route, with bad results. The results came back normal for both of them. Before I got the results back, it does take a few days to get the results, I took both of them off of gluten (well, mostly my younger son, because my husband really didn’t think anything was wrong with our older one), and there was a huge change in him. The first few days, it was like a drug withdrawal, I kid you not. It was the hardest thing I’ve been through, to not cave in and give him that piece of bread, I was bawling, he was bawling…but, I knew then that the gluten was causing his SPD. After that couple of days, he was a different kid, he smiled…my baby always had a painful look on his face before…and now he was smiling and playing. When the doctor did call back to tell me their results came back normal, she was furious at me for “denying my son nutrients” and that I was a horrible mother for taking gluten away from my son…needless to say, we changed doctors. I had a feeling that my little one was also dairy intolerant, and that my older one was gluten intolerant, so I needed to find a way to prove it to myself and my husband. We ended up going with EnteroLab, they do stool samples, instead of blood samples. Both of my boys carry 2 genes for gluten intolerance, my older son is gluten intolerant, but not Celiac. My younger one is Celiac (by the antibody levels, we never did a scope) and casein intolerant. Once we changed the diets, things in them continued to improve, for a couple of weeks. After about 2 weeks, my little one went downhill again, that’s when we realized we replaced all dairy products with soy…not good. Once we removed the soy from his diet he improved again, and has become that funny, cute kid that I knew was hiding in there behind all the pain.

During all of this diet change, my little one was actually in occupational therapy for his SPD. He was making baby step progression up until his diet change, he then floored his therapist with what he could do. Within weeks, the therapist finally told us not to come back, because there was nothing wrong with him anymore. It was a joyous day, and I made sure the therapist knew it was because we eliminated gluten, casein, and soy from his diet. My older one started seeing a child psychologist right after the diet change and within a couple of months, made enough progress to stop taking the prozac and has been able to cope with his anxiety issues so much better, another happy day!

Because of my realization to my intolerance to gluten and casein, my boys can live healthy fulfilled lives. But not only them. Since we started our diets, my sister and one of her daughters have gone gluten-free and dairy-free and have seen huge changes. I also started a blog (http://freelifeglutenfree.blogspot.com) and have become quite passionate about cooking. Yes, this is a life-changing disease, but it isn’t the end of your life. For me, it’s just the beginning, I can actually enjoy life now, and so can my boys!


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Kristi!

This is a guest post by Kristi. You can follow her Facebook page at Celiac Chick Newburgh.

I wanted to share my transition to the gluten free life almost two years ago! I would consider most of my life’s GI routine to be pretty normal. I went a lot but I thought that was normal! However, at the end of my 3rd pregnancy, I got really sick one night. I was 8 1/2 months pregnant and had one awful night in which I went to the bathroom with diarrhea about 20-25 times. Yeah…it sucked! I was even on a church retreat that weekend and was so sick! Anyhow, shortly after giving birth to Ryder, I got sick again about a month later. It was not as extreme but still enough to get my attention and get me into my primary docs office. Of course, they asked me if I knew when I was having these issues. Was it after I ate a certain food? I had no idea because I was going so frequently! I had my blood tested for CBC, parasites, etc. My calcium was low…my iron was low (and looking back, I never could give blood…go figure!).

Then I started dropping my baby weight…fast. (Now I wasn’t complaining about this, mind you!). I did stool samples…ewww…not fun! I finally was sent to a GI doc to see what else could be going on. So I met with the GI doc and he asked me all kinds of questions and asked me if I had heard about celiac disease. Well, my good friend Scarlett already suspected I may have this as she watched another good friend go through some similar symptoms and get diagnosed. Of course I wanted to totally ignore this!!! I just wanted to have Chrohn’s or something that you treat with medicine, not a GLUTEN FREE DIET! No way! Anyhow, he ran some blood tests but somehow I was not tested for celiac disease. However, I was tested for Chrohn’s and my results came back that I likely had it. So I was scheduled for a colonoscopy and sent on my way. I thought about it for the next few days…that might not be too bad…I may have to stop eating salad and stuff but I would live right? I now know how wrong I was…Chrohn’s definitely has awful risks and celiac disease can be mostly controlled through the gluten free diet.

So I had the colonoscopy…everything looked ok according to my GI doc but it would be a week before the results came back. I asked him on the exam table…while I was still loopy from the meds…if he would please order the celiac blood test. And I swear…my mom and sister, Kim, as my witness!…that he only ordered the tests to appease me! I was mad but guess how the results came back…I likely had celiac disease because my tTg antibody test was through the roof. Also, the biopsy from the colonoscopy came back to show I had microscopic colitis. That’s a whole other beast.

Back to the celiac results though, I was scheduled for an endoscopy and guess what…I had enough damage that the doctor was able to diagnosis me with celiac disease on the spot. I pretty much knew this was what was going to happen at this point. So I made a deal to wait 10 days to gluten free since I wanted to have a long farewell to gluten free party! On September 20, 2010, I went gluten free and have not purposely consumed any gluten since!

After my diagnosis, they suggested I get my kids tested. I kinda suspected my middle child might have celiac disease at this point. His height was only 3% at age 3 and my husband is 6ft, 2 in so we figured something might be going on. My daughter tested negative and you guessed it, my son, Dylan was positive. Endoscopy was actually negative though! SO they told us he did NOT have celiac disease…I found this hard to believe since they told me he had a lactose intolerance (which we did not previously though). We actually followed their advice and kept him on gluten for another 5 months, then finally did the gene test. He was positive for the DQ2 and DQ8 so we took him off gluten right away at age 3 1/2. He has done really well. Now my other two children also have the genes but have not been triggered since their antibodies remain negative.

Now about our life…I AM OBSESSED with baking! I love to bake even more now since I can make goodies for me and my son. I have a Facebook page called Celiac Chick Newburgh. Please feel free to send me a friend request and follow along. I have also started a wonderful supportive Facebook group page called Celiac and Gluten Intolerant. I LOVE my GLUTEN FREE LIFE AND would LOVE to share some great recipes with you! Enjoy!


  Affiliate Disclosure  Print This Post  Email This Post

Share Your Gluten-Free Story: Meet Krista!

This is a guest post by Krista of Welcome to Married Life

Our journey to gluten free began about three years ago when my now 5 year old son, Cory, was 2 1/2. He’d developed what I called a rash on the contact surfaces of the fingertips of his right hand. Only the one hand. The skin was peeling and cracking. I mentioned it to the doctor when we were in for a regular visit and over the course of the next year we tried just about every different kind of cream he could think of from anti-fungal to steroids. None of them seemed to help much so we ended up just using a thick lotion to “maintain” the skin and keep it from bleeding, but it never really went away. I figured he had some kind of eczema exacerbated by the fact that we live in a very dry climate, especially in the winter.

Last year about this time I took both my boys to a naturopath (then 4 and 1) to see about alternatives to immunizations. While there I showed her Cory’s fingers and she immediately suggested that he might have a gluten allergy. I was shocked and didn’t want to believe it. No one in my family has any kind of allergies… but my husband’s grandmother was a diagnosed Celiac and his twin sister lives a gluten free lifestyle that most likely cured her “fibromyalgia”. Since doing a gluten free trial felt overwhelming to me I wrote it off and instead the naturopath helped me come up with a mixture of lanolin and calendula oil to calm his fingers. It helped a lot, but the “rash” still wasn’t going away.

Then in June we went to Baltimore to visit my husband’s sister. We were there for a week and I forgot the lotion. However… his fingers cleared up completely by the end of the week. I was so surprised, but chalked it up to the 85% humidity they had while we were there. And, once we got home they started to peel again.

We continued to visit the naturopath and she again suggested the gluten free trial. I started looking at my calendar trying to figure out a 3 week period when we wouldn’t be going too many places as I thought it would be really hard for me to try and keep him from eating other things if we weren’t at home. By this point I was also 3 months pregnant and exhausted/nauseous all the time.

In October we hadn’t started the trial yet when one day everything just clicked in my mind. I realized that while we were visiting my sister-in-law back in June she had fed us main meals that were entirely gluten free. Yes, we had a few sandwiches and toast while we were there, but the amount of gluten we ate that week was probably 25% of what we normally eat at home. Combined with the humidity his fingers healed. I felt like a horrible mother. Here I was causing my son pain because I was scared to try an allergy free diet. Of course it didn’t help that my husband (seeing what his grandmother had gone through) didn’t want to believe the boys might have an allergy so wasn’t completely supportive when I first brought it up.

I immediately started them on a gluten free diet. The first week probably didn’t count because I really had NO idea what gluten was in. I fed him cornbread at a potluck thinking it was better than regular bread. We got the order for the blood test and on Halloween my husband took him to church and gave him a hotdog… with the bun. When they got home I decided we’d better just do the blood test anyway even though it hadn’t been the full three weeks so I loaded him up with bread and took him in the next day. That week waiting for the results was really difficult. I wanted to believe he didn’t have an allergy, but my gut told me differently. There were other symptoms too, mainly he complained of a a stomach ache often, especially when at my parents house. They eat even more gluten filled foods than we do. He would sometimes have to leave the dinner table to run to the bathroom while at their house.

Thankfully the test came back that he did NOT have Celiac disease, but he did have a significant gluten allergy. You can read my immediate reaction on my blog. I mentioned that I started both my boys on the gluten free diet… because my second son, Noah, then 18 months had also started to develop the same rash on the finger tips of one hand. He’d also had a red bumpy rash on his legs when we first introduced him to solid foods that I now attribute to gluten. The final telling factor is that after we went gluten free, his poop suddenly hardened up. (sorry for the TMI!) It never occurred to me that even after we’d introduced solid food he’d still continued to have a soft bowel like a baby. He has NOT been tested, but probably will be only so that we have documentation for school. I’m sure he has the allergy as well.

So, these past 6 months have been a whirlwind for me, especially because just a month later we discovered that I was carrying twin girls (who are now 5 weeks old). I didn’t have a whole lot of energy to try anything new so we mostly modified what we ate and bought prepackaged gluten free foods. Now that I am feeling better I’m branching out and going to try my hand at making my own of all kinds of GF food. I’ll be watching my girls like a hawk and probably won’t introduce gluten as one of their first foods (here’s looking at you, Cheerios!).

The other night my husband casually said to me, “So, who’s the missing link?” and pointed at himself. He wonders if he should be on a gluten free diet considering how many people in his family need it. I won’t hold my breath though as he loves his bread!

In all, I am so thankful that we don’t live 50 years ago when his grandmother was diagnosed. It’s so much easier now to live gluten free.


  Affiliate Disclosure  Print This Post  Email This Post