My FructMal Girl

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Showing posts from 2012

Operation Weight Gain (6 Months Post Celiac Diagnosis)

We took the kids down for their 6-Month GI appointments today. Dr. L said Buddy is a bit of an enigma. He was expecting him to be thriving at this point, but that isn't the case. The poor kid has lost another pound, he looks pale, has red circles under his eyes a lot of the time, and he still complains of tummy pain and reflux at bedtime, even while on medication (ranitidine, twice a day). He still can't tolerate dairy or much fructose. Dr. L wants to re-scope him in a couple weeks, to do the following: Recheck for Eosinophilic Esophagitis & H. Pylori, check the amount of healing in the duodenum, test for vitamin D deficiency, run a food allergy panel, recheck his Anti-Tissue Transglutaminase antibodies (celiac number), check his SED rate and CBC. We aren't excited about putting Buddy through another scope, but the last one was pretty quick and simple so hopefully this one will go the same way. We will try adding more oil to his meals and in his homemade almon

Fructose Malabsorption is getting some media attention!

You've heard of Lactose Intolerance and Gluten Intolerance, but you probably haven't head of Fructose Intolerance. Dr. Satish Rao says the emerging food sciences field holds the key to unlocking mysteries when it comes to allergies and intolerances. Jennie Montgomery explains in a WJBF News Channel 6 EXTRA report .

We survived Thanksgiving!

I had been dreading Thanksgiving since Buddy's celiac diagnosis in June, but I'm happy to say we survived and actually had a wonderful time. I prepared the kids' food at home: a turkey (cooked in the rotisserie), GF stuffing, macaroni salad, mashed potatoes (made with mayo since Buddy is also dairy intolerant), and homemade GF gravy...and we took it to my in-laws in Vonny Casserole Totes I found online. My mother-in-law made some candied pecans (with egg whites, cinnamon & sugar), as a sweet treat for the kids, since they can't do pies or other desserts. They were really tasty! After dinner we played a round of Pictionary, then the kids chose a movie to wrap up the night...Home Alone...an oldie, but goodie. ( Ronco Rotisserie & BBQ Oven ) This pic cracks me up. Doesn't the turkey look huge? It was 11lbs...the rotisserie has a 10lb limit, but we made it work! It turned out perfect - so tender and juicy! And to follow up on my la

Trip to the GI Doc

We made the 2 hour journey to see Dr. L (GI) on Tuesday to talk about Buddy's lack of weight gain... and evening tummy pain that started up this past week. Dr. L thought we should try doing a mini-cleanse. 2 caps of Miralax for 3 days, then 1 cap daily after that. If the pain doesn't improve within a week, he will call in Xifaxan to treat Small Intestine Bacterial Overgrowth. So far no complaints today so hopefully it was just a little back-up. As far as the weight goes - he was 62lbs this time last year and 62lbs today. Dr. would like him to gain a few pounds so we met with the dietician to see what we could add. She suggested almond milk and a variety of nuts (except pistachios). She wants us to challenge Greek yogurt and cheddar cheese, then a variety of fruits (kiwi, pineapple, cantaloupe, and blueberries). It will be a slow process because Buddy only wants to challenge new foods on Fridays in case he gets sick. He doesn't want to miss anymore school. I can&

Halloween Fun for FructMal Kids

This was our first Halloween with two FructMal kids. In the past we have donated our candy to a local dentist that ships it off to our troops. She gives the kids $1 per pound of candy, along with a flashing toothbrush, flossers, and a few small prizes. Buddy would donate the bulk of his candy, but would save his favorite pieces. This year, with celiac, FM, and dairy intolerance, most all of his candy would be off limits...and Miss Tootsie has very few that she tolerates as well. We talked about doing the candy buy back again this year, and this time donating all of the goodies...but I felt like we needed to do something a bit more exciting... We decided to have the Great Pumpkin pay us a visit! The kids got dressed up in their costumes and trick-or-treated their hearts out, knowing that they would be leaving it out for the Great Pumpkin. When we got home they ran upstairs and put their candy buckets in the guest room and closed the door. The plan was to leave them there and Mr

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Gluten Free | Dairy Free Almond Pancakes

2 Eggs 4 Tbs Oil 2 C Water 1 tsp Almond Extract 2-1/3 C King Arthur GF Flour 2 Tbs Sugar 1-1/2 tsp Baking Powder 3/4 tsp Salt 1/2 tsp Xanthan Gum

Buddy - 4 Months Post Celiac Diagnosis

It has been 4 months since Buddy was diagnosed with celiac disease. He is feeling well and his mood is upbeat. He gets out of the car at school in the morning with a smile on his face - ready to start the day! He is still off of the reflux medication and only takes Miralax as needed. He is having trouble with dairy though...we keep trying it, but it gives him reflux, tummy pain, and constipation. Still holding onto hope that this is just a temporary intolerance...same issue with fructose. Because he is so limited, we had to do something to supplement his calories and nutrients.... We started Buddy on Neocate E028 Splash , an elemental formula, 9 days ago because he was looking pretty thin and was feeling weak. He really likes it and would probably drink 5 a day if I let him, but I am encouraging him to eat as much as possible and letting him have the Splash in between meals. They come in juice boxes, which are very convenient and easy to grab on the go. The orange-pineapple h

Buddy is Healing

Buddy has been feeling really good the past two weeks. He finished his SIBO medication on September 26th and we stopped his reflux med on the 27th. He hasn't had any tummy pains (except one day following a stay at Grandma's where he had eaten a few cherry tomatoes). He is going to sleep easier, he has a good appetite, no reflux, and his mood and energy levels have improved. We are allowing small amounts of dairy and he seems to be tolerating it. We are thrilled with his progress! I almost hate to write about it in a blog post, in fear that I'll jinx it, but for now at this moment things are going great for Buddy! We pray that he continues to heal and that his fructose malabsorption goes away.

Dr. Siebecker - SIBO Info

These are great videos on SIBO (Small Intestine Bacterial Overgrowth) by Dr. Siebecker. They explain what SIBO is, how to test for it, and how to treat it. I found them very informative. SIBOinfo.com

Celiac Affects 1 in 133 - Is Your Child One of Them?

Click on the image below for a larger view...

Starting Day 3 of SIBO Treatment

This morning I have a happy boy, giggling with his sister at the breakfast table. He slept in his own room last night and said he didn't have any bad dreams! He is starting his 3rd day of Xifaxan today...it must be working! His Fructose Breath Test was on Tuesday, he felt okay Wednesday, but Thursday was a really rough day for him. His legs hurt really bad, he had a headache, and his eyes were welled-up with tears. He said he felt like he could cry at any moment. Not from the pain, he was just feeling down and weepy beyond his control. It's amazing what fructose can do to a person when it's not absorbed properly! And I'm sure the fructose fed his SIBO, which intensified things. His GI would like to test for fructose malabsorption again in 6 months to see if things have changed after a period of healing. I am praying that he heals and we can add dairy and fructose back in. If gluten was all we had to worry out, life would be so much easier! But with little

My FructMal Boy

Oh, the sadness I am feeling today... We just learned that my boy also has Fructose Malabsorption & Small Intestine Bacterial Overgrowth just like his little sis. He had a hydrogen breath test yesterday to confirm it. I knew something was up...he should have been improving on the gluten free diet. The doctor, the nurse, and the dietician said we should see healing within 3-6 months. It has been 3 months and he is still having bouts of reflux, despite being on a daily reflux medication. He is still having tummy pains, difficulty falling asleep at night, bad dreams, and some depression. I feel like I've been socked in the stomach. Why is this happening to my kids? I know things could be worse, but shoot, this really takes a lot of the fun & the carefree spirit out of life. I am taking a moment to feel sorry for myself, but tomorrow I will put on my big girl pants and I will do what needs to be done to keep my little kiddos healthy & thriving! And I will conti

Just in Time!

Well, I'm happy to report my Celiac boy is feeling much better! Just in time for school! His hairy tongue is gone, his appetite is back, he has plenty of energy, and is going to sleep easier. No more tummy complaints and he's back to planning his social calendar! When he was feeling crummy, all he wanted to do was lay around and play computer games. Now he's planning play dates and family outings. It's great to see him back to his old self. We are now 10 weeks post diagnosis. He is off all dairy, he's taking the original dose (20mg) of omeprazole, he very rarely has to take Pepto Bismol in addition to the reflux pill, and he started a new vitamin/mineral supplement called Thorne Children's Basic Nutrients , in addition to the Nordic Naturals DHA Junior. He is putting on weight too and he says he thinks he's growing. Woohoo! I should also mention, he has seen a Child Mental Health Specialist (Miss B) weekly for the past 5 weeks. She is fantastic wi

Visit to the Naturopath

We had a great appointment with a new Naturopathic Doctor (Dr. A). She saw both kids and had some helpful suggestions. Our poor Buddy is still struggling to feel good. He has some okay days and some days where he feels crummy. Dr. A palpated his tummy and said he's bloated and that things aren't happy in there. She recommended going back to the original dose of omeprazole (20mg) - she said the double dose he's taking (prescribed by his GI) will lower his stomach acid to a point that his digestive enzymes will be less effective...creating more discomfort. She also recommended removing dairy from his diet. He has been drinking a lot of lactose-free milk and eating lactose-free/gluten-free pudding. She thought by removing dairy, his reflux would improve and create a happier environment for the villi to heal. She also started him on DHA Junior by Nordic Naturals - 8 capsules per day. This would increase his omega 3 from 164mg (in the Nordic Omega 3 Gummies) to 504mg. H

Creating a Gluten Free Home

These are great videos for helping you prepare a gluten-free home and keeping your kiddos safe! This is a great one as well...

Not So Positive Today

Well, just when I started to get excited... Here we are again with tummy pain and no appetite. Ugh... Buddy's biggest complaint is he feels like his food is getting stuck in his throat or something is in his throat that he can't swallow. He doesn't think it's reflux...he thinks things are having a hard time going down. There have been several cases where he's eating something and runs for a glass of water to try and wash it down...and he's crying and in a panic because it feels like it's stuck. Dr. L prescribed Prilosec yesterday and ordered a swallow study. He said he checked for eosinophilic esophagitis during the endoscopy and it was negative. We'll see what the swallow study shows.... --July 29, 2012-- Buddy's new complaint is his tongue feels like a sponge and it feels like food is getting stuck in it. I had him stick his tongue out last night and it had a "hairy" appearance. I looked up "thrush" and "

One Month Into Our Gluten-Free Life

Well, it has been a month since our boy's celiac diagnosis. It hasn't been smooth sailing. I guess I thought by adhering to a strict gluten-free diet he'd feel better immediately. That hasn't been the case. Reflux has been one of his symptoms all along and at the 2 week point he was miserable. He was having reflux a couple times a day - usually 30 minutes or so after a meal and he was taking Pepto Bismol at bedtime a few nights a week. His appetite decreased and he was having pain in the middle of his tummy and under his ribs, despite being gluten-free, lactose-free, and low fructose. I called his GI doc (Dr. L) to see what to do. He recommended trying a Miralax cleanse since his stools were firm and large. He said to call back if that didn't eleviate his symptoms. It seemed to work for about 3 days, then Buddy was back where he started with pain and reflux. I called Dr. L back and he suggested a round of metronidazole (generic for Flagyl) to treat susp

Parents of Celiac Kids USA

I started a new group for Parents of Celiac Kids tonight. The FructMal group has been such a wonderful support for me. I wasn't sure if I wanted to take on another group and actually looked to join an established group, but couldn't find one. There are Facebook "pages"for celiac parents, but the conversations aren't private. "Groups" are private, which allows us to talk freely and openly...a much better experience for everyone. Please share this link with friends and family - I'd love to meet other parents of celiac kids! http://www.facebook.com/groups/255570717890304/

Gluten Free Mama - Mama's Almond Blend

Our first bag of Mama's Almond Blend - All Purpose GF Flour arrived today. We really like King Arthur's All Purpose GF Flour, but Mama's blend was highly recommended by a friend so we thought we'd give it a try. It is $2.41 cheaper than King Arthur, for a 4lb bag, so that's a plus! I'll add a review once we've tried it...

A Backyard Adventure

The kids talked me into sleeping in the tent tonight...and yes, that's the dog! Wish me luck! Also, I'm happy to report our first week of being gluten-free went very well! Buddy had 4 days of grumpiness, 2 nights with nightmares, and 2 days with a headache...but that is all behind us now and he's feeling great. The bloating, pain, nausea and reflux have gone away! He tested out a Lactaid pill with a plate of nachos and it worked like a charm. He is excited about his new diet and he is interested in helping me cook. Watch for some cooking pics in our future posts!

Celiac Disease: Dining Out

This is a great video showing a family dining out and the questions that need to be asked when ordering a meal.

My FructMal Girl...and Celiac Boy?

Well, this is all starting to starting to sink in... We saw Dr. L on the 3rd of June for a follow-up with Tootsie and to have Buddy seen for his increasing discomfort and array of symptoms. These are the symptoms he presented with: Bloating Constipation Reflux Sharp abdominal pain Lactose intolerance Large volume stools...large diameter Leg bruising Joint Pain Muscle Pain Feeling like he was going to vomit at bedtime Irritability/moodiness...Buddy said he felt like he had a bad temper. Dr. L listened carefully to everything we said and decided to start with an endoscopy. I could see the wheels turning as he was listening to us and felt like he was leaning toward celiac disease, but couldn't believe our boy could have it. Just 5 days later, on June 13th, Buddy had the scope done and while he was under they did blood work as well. He was very nervous about the whole thing, but put on a brave face and did very well! After it was all done he said, "That was

GF Breaded Cod

GF Breaded Cod We save our Udi's White Sandwich Bread heals in the freezer and throw a few in the food processor when we are in need of bread crumbs. Ingredients: 3 Cod Fillets Udi's Crumbs (3 heals) 1 egg a few shakes of parsley & salt to taste Coat the cod fillets in egg, then bread crumbs and sprinkle with parsley & salt. Bake at 400ºF for 15-18 minutes.

Egg, Bacon & Cheese Panini

Egg, Bacon & Havarti Panini on Udi's White Sandwich Bread 1 fried egg 1 or 2 strips of cooked bacon 1 slice of havarti cheese Udi's White Sandwich Bread Butter the outer sides & Press! (sorry for the blurry cell phone pics)

GI Follow-Up

Tootsie had a great check-up with the GI doctor yesterday. She is 44.4 inches and 41 pounds. At her last appointment in February she was 43.8 inches and 39 pounds - she's growing! Dr. L would like to keep her on a maintenance dose of Xifaxan for 6 more months since it is working so well for her. She takes 200mg, 2x/day, for 5 days - once a month. Our next follow-up will be in November sometime.

FODMAP Challenges

Here is a list of foods to be challenged by carbohydrate category - after you've found your happy, symptom-free place, with the 3-week FODMAP elimination. You want to pick one category to challenge at a time. Each new food should be challenged alone for 3 days - you don't want to challenge two foods at once or you'll never know which caused the reaction. It is strongly recommended to do food eliminations and challenges under the care of a registered dietician. You should also keep a detailed food journal - listing everything that goes in your mouth, along with symptoms, and BM frequency, size & consistency. Here is a link to a FODMAP Friendly dietician directory by state...and I highly recommend Patsy Catsos' book, IBS--Free at Last, second edition . It is a fantastic book that will walk you through the challenges and includes shopping lists & meal plans. Lactose Challenge - (we do okay with lactose) Cheese, in larger servings Cottage cheese Milk

FODMAP Elimination Diet

This is the FODMAP elimination diet plan we followed when Tootsie was first diagnosed. However, she couldn't and still cannot tolerate fruit so we have taken all fruit out except for ripe banana. It is recommended that you eat only the allowed foods for a few weeks to establish a baseline (free of IBS symptoms). Allowed Grains/Starches : Amaranth Buckwheat Corn Flakes (Erewhon brand - corn & salt) Corn Tortillas Crackers (rice or corn) Rice crackers Rice Krispies Popcorn Potato Potato chips (plain) Rice cakes Soba Noodles (100% buckwheat) Tortilla chips Allowed fats : Nuts (except pistachios) Oil (any type, including coconut and garlic infused) Olives (black) Peanut butter (peanuts, salt) Seeds (sunflower, sesame) Butter Margarine Mayonnaise Half-n-half Sour cream Whipping cream Cream cheese Allowed vegetables (small serving sizes if you suspect FM): Bamboo shoots Bean sprouts Bok Choy Carrots (limited) Celery (limited) Cucumber (English

It was a Happy Mother's Day

I had a wonderful Mother's Day with my family. It started out with Tootsie serving me coffee in bed, while Dad cooked breakfast. Then we got ready and visited the Country Store to pick up some seeds for the garden. Tootsie picked out her favorites...snap peas, english cucumbers, zucchini, and corn. Check out the picture of her on the John Deere toybox...can you see what is hiding inside? Yep, my silly boy is hiding in there! We went home and got to work - we planted pumpkins, zucchini, cantaloupe, carrots, cucumber, corn, potatoes, snap peas, and tomatoes. After planting the garden and having a bite to eat, we grabbed our sandcastle buckets and headed for the beach. It was the perfect temperature (low 70's) and the kids had a blast. We sat back and enjoyed the sound of the water, the birds, and the soft guitar music from a man playing for his family. It was the perfect evening. We didn't know this family, but we really appreciated the music...i