My FructMal Girl

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Showing posts from 2011

We Survived Christmas!

The holidays were hard for my little lady, but she handled them quite well for an almost six-year-old. She and her brother ended up with the stomach flu! Buddy was down-and-out on Christmas Eve with waves of nausea, but never threw up. We had to skip church, which was sad because it is always a great service and helps us to remember what Christ mas is all about. Buddy rallied for a couple hours that night to open presents with the cousins on my side, at grandma's house, just down the road. Miss Tootsie ended up with the bug on Christmas morning...she woke me up at 6:30 saying her tummy hurt, then a couple minutes later she was vomiting on the floor. By mid-day they were feeling pretty good and we were able to join my husband's family for Christmas dinner. One of the cousins also had the bug so we figured it couldn't hurt to get together since everyone had been exposed. There were lots of temptations on Christmas and we caved on a few treats, which didn't see

Spaghetti Carbonara

Kosher salt 1 (8-ounce) package Quinoa spaghetti 6 strips bacon 3 large eggs, room temperature 1/2 cup shredded Parmesan, divided Freshly ground black pepper 1 tablespoon chopped fresh parsley Bring a large pot of salted water to a boil. Add the spaghetti, cover the pot, and bring it back to a boil. Remove the cover, stir, and cook until al dente, about 8 minutes. Reserve 1 cup of pasta cooking water. Drain the pasta and set aside. While the pasta is cooking, place of the bacon into a large skillet over medium heat and cook until crispy, about 8 minutes. In a medium bowl, beat the eggs with half the Parmesan and season with salt and pepper. Set aside. Chop the bacon and set aside. Remove all but 1 tablespoon fat from the pan and put the pan back on the heat. Add the cooked spaghetti and toss to coat in the bacon grease. Turn off the heat and add the egg mixture. Toss gently to coat the pasta and cook the eggs. Toss in the chopped bacon. If the sauce is too thick, add the pa

Ultimate Chicken Fingers (Gluten Free)

Here is a great recipe for Chicken Strips using GF Bisquick!

GF Bisquick

A good friend of mine has a gluten sensitive hubby and she told me about GF Bisquick last night! I never thought to look for it. We make homemade biscuits with the same ingredients, but it's nice to have it premixed to save time on busy evenings.

SIBO & Food Allergy Testing

Well, little Toots has been having some trouble with constipation for the past month, she seems to get full quickly, and she has had a stronger craving for sugar. I have also noticed a bit of irritability and she has been looking a little thin. We called down to the GI specialist (Dr. L) to see what we should do and he said we should schedule another breath test. Ugh. Not something we really wanted to hear, but we agreed it should probably be done... Today was the big day and the test didn't go so great. She swallowed the last drop of the fructose solution, then started heaving. I tried to get her to breath deeply and was rubbing her back, but it didn't work. Most of the solution came shooting out in a projectile fashion all over the floor. Poor girl - she looked grey. The lab tech called up to Dr. L's office and he said to send her on up. We stopped by the restroom to change her clothing, and she ended up covering the bathroom floor with the rest of the soluti

Fit N Fresh insulated tote

If you or your child has FructMal, you know what it's like to always have a snack bag packed and ready to go. We purchased this insulated tote a couple weeks ago and we love it! It is by Fit N Fresh and it is a great size. It has a zipper closure and opens completely to form a box. It keeps things nice and cold - all day!

What can she eat?

We get this question a lot. Here is a list of foods that Tootsie can eat... BREAD Udi's white sandwich bread (Haggen, Fred Meyer) Udi's Multi Grain (Costco) Corn tortillas (She likes the soft ones. We use them for quesadillas, topped with sour cream). CEREAL Rice Chex Corn Chex PASTA Annie's Mac-n-Cheese - white rice noodles. (Haggen & Fred Meyer) Jovial Brown Rice Noodles (Haggen) NUTS - almonds, pecans & peanuts. Adam's natural peanut butter (no sugar added). FRUIT Banana - 1 per day. Ripe, but no spots. 1/2 a Clementine orange VEGETABLES Red Pepper (1/2 per day) English Cucumber A little raw Broccoli Lettuce Potatoes - Mashed, baked, or fried. We stick with russet potatoes DAIRY Cheese - unflavored, unprocessed Milk - lactose free Butter - salted, real butter Sour Cream - Daisy (not fat free) MEAT, POULTRY, FISH Unprocessed, unseasoned Meat, Fish, & Poultry Lunch meat - Boar's Head smoked ham. (Fred Meyer

Breath Hydrogen Scores for SIBO and Fructose Malabsorption

Here are Tootsie's breath hydrogen scores showing SIBO and Fructose Malabsorption.

Well-Child Exam

Tootsie had her Well-Child Exam yesterday with the pediatrician. She is a little over 5-1/2 years old and measures 43 inches tall and weighs 39 pounds. She is in the 23rd percentile for both height and weight. Her BMI is 15. This is huge for her! I was looking through her growth from birth and she was always in the 5-10% for height and not on the charts for weight. Now that we have our girl figured out, she's growing and thriving! It's so exciting to see. More exciting news: I spoke with our dietitian last night and she said she is urging the doctors at our area's largest teaching hospital to purchase a Breath Hydrogen Testing Machine! They are currently sending adult patients to a local children's hospital for testing. She said it was because of us that this medical advancement could be taking place! So cool! Here are some growth chart calculators - for ages 2-20. If you have little ones younger than 2, this site also has an infants & babies chart:

Today's Dietician - Not So Sweet: Fructose Malabsorption

Here is a great article from this month's issue of Today's Dietician ... September 2011 Issue Not So Sweet: Fructose Malabsorption By Lisa S. Brown, PhD, RD, and Nina Current Today’s Dietitian Vol. 13 No. 9 P. 70 Suggested CDR Learning Codes: 2000, 3005, 5110, 5220, 5290; Level 2 An 87-year-old woman presented with a history of gastric distress. She’d been experiencing chronic diarrhea for the past 30 years, with bouts increasing from a few times per month to several times per week. Previously she’d screened negative for celiac disease and a trial gluten-free diet had no effect. She’d tested positive for lactose intolerance and had been on a low-lactose diet for approximately 10 years, which had been helpful, though symptoms persisted. As a last resort, her doctor sent her to a dietitian who, based on the medical history and symptoms, immediately initiated a low-fructose diet to see whether the client might have fructose malabsorption (FM). Almost immediately, the woman exp

FDA - Hidden HFCS

Hi Guys, I need to ask a big a favor of you! Could you please write a letter to the FDA demanding that "High Fructose Corn Syrup" be plainly listed on ingredient labels. They are currently hiding HFCS under the label "Corn Syrup", saying that it is a GRAS substance (Generally Regarded As Safe). This is very misleading to Fructose Malabsorbers. Individuals with FructMal can have Corn Syrup , which is also called dextrose or glucose. Corn syrup in it's pure form does not contain fructose and is totally safe for them. HFCS, on the other hand, is not safe for them and causes all kinds of trouble - such as tummy upset, constipation, diarrhea, sleep disturbance, mood swings, and can cause Small Intestine Bacterial Overgrowth. There is a lot of political debate going on right now with HFCS and the Corn Refiners Association wanting to change the name to "Corn Sugar"...further disguising HFCS. So far the FDA is not going along with CRA's ca

Homemade Vanilla Ice Cream Recipe

A special treat that Tootsie enjoys is our homemade vanilla ice cream! This recipe has been passed down from Great-Grandma (Nana-Rie) - the sugar content has been modified so that it is more FructMal friendly. Ice Cream 4 eggs 4 tsp vanilla 1/4 tsp salt 2-1/4 C pure cane sugar (we use 1-1/2 cups) 5 C milk 4 C whipping cream Mix all ingredients together & chill for several hours in the refrigerator. We chill it in the metal container that goes with our ice cream maker. Follow your ice cream maker's instructions for turning the mixture into ice cream. Makes 1 Gallon. Tootsie's serving size is about 1/3 of a cup.

Follow-Up Breath Test

We took Tootsie down for a follow-up fructose tolerance test last week to test for SIBO. She tolerated the test very well this time around. So well, in fact, that I called down and asked the nurse if she had been given the right solution. She confirmed that Tootsie had been given fructose. Wow! This was a huge change from the past two times she braved the test. No tummy aches this time, no diarrhea, no vomiting. No symptoms whatsoever. Amazing. We got a call the following day from Dr. L's nurse saying that Toots did not have SIBO and her fructose score was down to 28! She is still malabsorbing, but the numbers aren't off the charts like they were in July. We attribute this to a successful treatment with Xifaxan, the introduction of probiotics, and following the low FODMAP diet. We are thrilled that she has come so far! However, she is dealing with some constipation this week - we think it is from the high dose of fructose she was given for the test. We hope it do

Wheat Challenge

Tootsie has completed 2 weeks of wheat trials. In the beginning we introduced a half a slice of potato bread (first ingredient: wheat flour) and she didn't complain of a tummy ache. The second day we gave her whole piece and that night she had some cramping - then she didn't have a BM for 2 full days. During those two days we went back to the elimination diet to let her intestines rest. We ended up introducing swedish pancakes and Pillsbury Crescent Rolls, both made with wheat flour, and she didn't have any trouble. Right now we are allowing 1-2 wheat items every-other-day so we don't overwhelm her system. So far it's going good...although it's a slow process...

Testing for Iron Deficiency

I was worried that Tootsie's iron levels could be low since she isn't getting any iron in her multivitamins and she doesn't eat much red meat (and drinks a lot of milk) - so we made an appointment with the pediatrician. Dr. Z agreed that we should test - just to be sure. Tootsie wasn't having any major symptoms that would point to a deficiency...just cracked corners of her mouth and sometimes dark circles under her eyes (which could be from any number of things). Here is a photo of little Toots being a very brave girl. You can't see the bear in the upper left corner very well, but that was her surprise for being such a great patient. She handles these tests like a champ - never a tear or a complaint! The lab work was taken yesterday and I just received a call from the nurse stating her iron levels are normal! Yay! I guess she is getting enough in her bread, eggs, cereal, etc.... I looked at the box of Rice Krispies this morning and it has 50% of the daily

Robert H. Lustig - Interviewed about Fructose

This is a must watch video for all Americans - especially mothers! Start keeping track of the grams of sugar you are feeding your children and you will be amazed at the total. It really is no wonder 1/3 of our adult population is obese (33.8%)...and 17% of our children! ...And the reason why grocery shopping makes me want to pull my hair out when shopping for my FructMal girl!!! This is also a great video, which goes further in depth with research that proves the damage caused by sugary foods. Dr. Lustig argues that fructose (too much) and fiber (not enough) appear to be cornerstones of the obesity epidemic through their effects on insulin. Robert H. Lustig, MD Professor of Clinical Pediatrics, in the Division of Endocrinology Director of the Weight Assessment for Teen and Child Health (WATCH) Program at UCSF

Elimination diet almost complete!

Well, we have discovered Tootsie has a very low tolerance to fructose. She ended up having a reaction to the small amounts of oranges and bananas she was consuming. By reaction I mean abdominal cramping off-and-on for two days, an "off mood", crying out in her sleep one night, and purple circles under her eyes. We have taken oranges and bananas out of her diet for now. That means she is consuming no fruit whatsoever. It makes me wonder if the SIBO treatment was successful. We have scheduled a follow-up breath test for early September. I hate this disorder! I hate that she can't eat freely among her peers. I hate that she feels different and isolated. I hate that I have to say over-and-over again, "No, you cannot have that." I remind myself on a daily basis that things could be worse, but it still gets me down. I worry about her long term health. I worry about sending her off to school. I can't help but wonder if the antibiotics I was taking fo

FODMAPS Elimination Diet

We have completed 1 week of the elimination diet and tootsie is feeling really good. She has had very little gas, no issues with constipation, and has a healthy appetite. Her mood and sleep have been great as well. These are food ingredients/additives that must be AVOIDED during the elimination phase: Bulgar Wheat, Brown Sugar, Crystalline Fructose, Coconut Milk, Dry Milk Solids, Fructo-oligosaccharides/FOS, Fructose, Fructose Solids, Fruit-juice concentrates, Goat's milk, High-fructose corn syrup, Honey, Hydrogenated starch hydrolysates, Inulin, Isomalt, Kamut, Lactitol, Maltitol, Mannitol, Miso, Modified starch, Molasses, Polydextrose, Sorbitol, Soy Protein Isolate, Spelt, Sprouted Wheat, Texturized Vegetable Protein, Tomato Paste, Wheat Berries, Wheat Flour (white, whole wheat, all purpose), Whey Protein Concentrate, Xylitol She is eating Udi's White Sandwich Bread - about 3 slices per day. It is made with brown rice flour. I had read that brown rice is a fructan

Multivitamin for FructMal kids

Miss J found a multivitamin that is suitable for FructMal kids: Gummy Power Sours - Multivitamin & Multimineral with extra Vit C . We ordered them online and Tootsie LOVES them. They aren't too sour and they come in tasty fruit flavors (pineapple, strawberry, raspberry, and lemon). Tootsie also takes (2) Omega 3, 6, 9 soft gels daily by Animal Parade . These also taste great and don't have a strong fish after taste.

Met with the Dietician

We met with Miss J (dietician) today. We discussed the low FODMAP diet (Fermentable Oligo-, Di- and Mono-Saccharides and Polyols) and how to introduce foods in a systematic way so we can observe symptoms. We know that Tootsie can tolerate lactose - she tested negative to a lactose breath test and has no physical symptoms to dairy (thank goodness!). We know she is very sensitive to fructose, but what we need to find out is if she can tolerate fructans (wheat, garlic, onions, zucchini, asparagus, artichoke, ect) and galactans (canned beans, green beans, soy, tofu, cabbage, etc). Over the next month we will be keeping a log of what she eats and also keeping track of any GI or mood changes. The first week will be a usual week, the 2nd & 3rd weeks will be an elimination diet - which is strictly FODMAP free, and the 4th week will be introducing fructans back in...then galactans. Miss J wants her to cut out all sorbitol and all other sugar alcohols (polyols) from her diet. They i

Finished Antibiotic - Now onto Probiotic

Tootsie finished up her 7 day course of Xifaxan and is now on day 5 of a 2 week course of probiotics ( BioGaia straws ). She did pretty well on the antibiotics. She did experience bacteria die-off symptoms. She complained of a headache for a few days and had 2 days of what I call an "off" mood. Those two nights she also had a night terror. She doesn't wake up when she has them. She just screams loudly and thrashes around in her bed. We started noticing the die-off symptoms on days 6, 7 & 8. Dr. D (naturopath) recommended increasing her vitamin C to 250mg/day and increasing her water intake to keep her system flushed. She has been doing great the past few days so I think we have gotten beyond it! We meet with the dietician on Monday - she will also be starting a new supplement on Monday, called Intestinal Repair Complex .

Xifaxan 200mg Twice Daily

Dr. L's nurse called first thing this morning to say the Xifaxan had been called in. They are such a great group of people at that clinic! So pleasant to speak with over the phone and so patient with my many questions. I phoned our local drug store to see when the prescription would be ready. They said they didn't have any in stock and would have to order some. I asked if it was okay if I called around to see if I could locate some at another pharmacy and they said that would be great. The 5th pharmacy (30 miles away) happened to have the pediatric dose on hand! Woohoo! Dr. L told me this medication wasn't prescribed as often because it is spendy and often not covered by insurance. I was prepared to pay a few hundred dollars and was pleasantly surprised when they said, "That will be $35 please." Thank goodness for good insurance! I was surprised, however, to learn that this medication only comes in pill form! Eek! Tootsie had never swallowed a pill

Intestinal Yeast Overgrowth

I began researching Yeast Overgrowth in Children and I couldn't believe what I found! My little girl had almost every sign and symptom of it! I jumped on the phone and called our new GI specialist. It was a Friday afternoon (naturally), but I was able to get through to a nurse. I told her I thought my daughter had thrush. She said she would run it by the doctor and she would call me back. She called back an hour later saying it was a side effect of the medication and they could change the prescription if I wanted. Tootsie only had a few days left of her current medication so I told them we would just finish it out. Not satisfied with the answer I got, or the fact that I didn't express my concern properly, I decided to take little Toots to the Walk-in clinic. We lucked out and met with a very understanding doctor. She agreed that Tootsie could be suffering from Yeast Overgrowth. She prescribed Oral Nystatin - 5ML, 4x/day. It took a week or so to begin to see improv

A Mom on a Mission

Tootsie doesn't have a food "allergy", but I found this video to be very informative and may be of interest to those suffering from food allergies.

Proper Testing for Fructose Malabsorption

Technically, Tootsie didn't test positive for Fructose Malabsorption until yesterday - although we were quite certain she had it based on her symptoms . We attempted the Fructose Tolerance test back in May 2010, but the test wasn't done properly at the leading Children's Hospital in our state. She wasn't instructed to follow a strict fasting diet the day prior to the test and the lab tech stopped the test 3o minutes in, saying she was positive for FructMal because her first reading was over 20ppm. We met with their dietician a couple weeks later who handed us a printout with foods to avoid. She had no knowledge on FructMal and the information given was something I could have printed from the internet. The entire appointment was about 15 minutes. We left there feeling even more confused and upset than when we started. We then made an appointment to meet with their gastroenterologist. We had to wait 2 months to get in! We were so anxious to meet with a "speci

Fructose Tolerance/ Breath Hydrogen Test Results

I just talked with the nurse and Tootsie's breath hydrogen numbers are: 41 92 146 78 38 These numbers should not be above 20! There should be 7 numbers in total, but the nurse stopped at 5 and said, "As you can see these numbers are well above the threshold." The test shows she has a bacterial overgrowth in her small intestine and it also shows she is malabsorbing fructose (which we knew). We will start Xifaxin next week, followed by a probiotic for 2 weeks. We have an appointment with a dietician who will go over the FODMAP diet with us later in the month. **Done properly, the Fructose Tolerance Hydrogen Breath Test should be 2-1/2 hours long. Breath samples are taken at 15 minute intervals for the first hour, then every 1/2 hour for the duration of the test. A spike in numbers in the beginning of the test shows a Bacterial Overgrowth. A spike in numbers in the later half of the test shows Fructose Malabsorption. If your lab tech stops the test at 30 minutes -

Welcome to our blog...

I was starting to overwhelm my Facebook page with updates on my little one so I decided to created this blog! My little girl is 5-1/2 years old and was diagnosed with Fructose Malabsorption 1 year ago. Since then she has been treated for SIBO (small bowel bacterial overgrowth) and for intestinal yeast overgrowth. She completed a hydrogen breath test yesterday which showed she was strongly positive for SIBO again. Her last bout was 8 months ago. Join me as we travel along this journey...

MY FRUCTMAL GIRL

Our little girl, Tootsie, was diagnosed with Fructose Malabsorption (FM), Small Intestine Bacterial Overgrowth (SIBO) and Small Intestine Fungal Overgrowth (SIFO) in 2010. This is our 7 year journey of finding the proper treatment, healing, and ultimately a CURE! Two years into the journey our son, Buddy, was diagnosed with Celiac Disease, SIBO, SIFO, FM and Dairy Intolerance.