Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help Please - No Gluten, No Lactose, And No Sucrose


melaniesilvers

Recommended Posts

melaniesilvers Rookie

I really need help. I'm overwhelmed and don't know where to start. We have been gluten free for almost a week since my almost 4 yr old was diagnosed by endoscopy last week. I just got a call from the ped GI's nurse that told me we need to stop lactose and sucrose. I'm ok with lactose. I know they have many options out there for lactose free dairy products. I'm overwhelmed though when I put it all together. For the past week, I have been giving him coco pebbles, yopait yogurt, sting cheese, lots of fresh fruit, pb and j sandwiches, and other grilled meats. I have been using one meal a day (typically dinner) to experiment with new gluten free breads, attempting gluten free bisquick breaded chicken, and other gluten free recipes.

When I asked the nurse questions such as "can he have fresh fruit? Artificial sweeteners? How long do we need to do this?" She had to get off the phone and ask someone else all of my questions and was not very educated on the matter. I was told no fruit (which I figured) and we could have artificial sweeteners just not splenda. My son's 4 yr old birthday party is in 2 weeks - I'm guessing no cake. Also, I have recently got him to swallow his Prevacid capsule in a spoonful of applesauce - ideas on this now. We have the pill form because evidently the chewable tablet is not covered by insurance.

I'm overwhelmed and don't know where to start.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

While I don't recall your previous posts, why does he need to be sugar-free?

Takala Enthusiast

I don't understand this. Why would any 4 year old need to have no fruit ? Call the doctor's office back.

T.H. Community Regular

I would double check again exactly what your child shouldn't eat and why, and get a good Dietician to help figure it out. Is it something like this: http://en.wikipedia.org/wiki/Sucrose_intolerance ?

You'll want to make sure that a celiac knowledgeable doctor diagnoses something like that, because from what it sounds like something like celiac disease can cause a temporary form of this (yeah, according to wikipedia, so I don't know how reliable that source is. :D )

Some fruits have sucrose as the main sugar, some have fructose as the main sugar, so not all are big sources of sucrose. And when it comes to veggies, many of those are technically fruit as well, so where would they fall? And sugarcane is obviously an issue, too, yes? Lots of other foods have added sucrose, too (boullion can, for example), so if it's actually the issue, you'll definitely need some help tracking it down.

For food, though - you'll have to make everything from scratch, first off. There is almost nothing out there processed that is gluten free and sugar cane free (I'm allergic to sugar cane, so I was really looking in the beginning!).

If your little one can have agave syrup (that's about 2% sucrose, a little glucose, and mostly fructose), one desert treat is the So Delicious coconut based frozen 'ice cream.' It's dairy free, gluten free, and they use agave syrup rather than sugar cane. I am not sure of the other ingredients, however, so you'll need to check those.

Things that worked for us in this situation (dairy, gluten, and sugar cane free): hummus and raw veggies to dip into it, roasted chickpeas for crunchy snacks, roasted veggies, ground meat with little homemade sauces, veggies, or grains inside. Grape leaves or lettuce leaves wrapped around fish, soy sauce, and cucumber or other veggies. Chicken works well too. little rice sushi rolls are great, and meatballs as finger foods with tomato, soy sauce, mayo, horseradish, mustard, or veggie sauces. Yacon syrup is one your little one might be able to have, as it has inulin as the sweetener. Expensive, though, so you probably won't be able to use much.

Making things from whole grains should work well, for breads, although you'll have to see if you can add any sweetener at all. If not, crackers might be best. Or get some corn masa (treated corn flour) to make corn tortillas and use salt, water, and corn masa for the simplest, dry pan fried. They taste great, are filling, and are great with fried pieces of meat or potatoes. Tear off a piece of tortilla and put some of the filling on them and eat like that.

A mexican lasagna is made like that. Home-made (and cooked) corn tortillas alternating with a chicken/chile/tomatoes mixture. The chicken mixture should be juicy, so soaks into the corn tortillas. Turns out nice, IMO. Can also use tofu for another layer, if you can use that. Get silken tofu, mash it with a fork, mix it with herbs/salt/seasonings, and put it in the lasagna like you would cheese. With enough seasonings, and the strong flavors of the other ingredients, it just adds the nice consistency of almost-cheese and tastes fine. :-)

melaniesilvers Rookie

Your questions have given me the reassurance I need to call back. I didn't realize how confused I was on the issue too. So, when we went for our initial consultation with ped GI, he stated that he wanted to do the endoscopy based on the celiac panel. He stated that he also wanted to do a test to see if my son could process lactose and sucrose. He stated that it would depend on the severity of the damage to the cilia. He stated that the receptors that process lactose live on the end of the cilia as well as the receptors that process sucrose. After doing some research today, it seems like the jury is still out on if sucrose processing is an issue that could be affected due to celiac. Some say the two are linked, while others say there is no proof.

So I guess I need to ask can he have glucose or fructose too. I guess I really need to question some more. I was told he could have artificial sweeteners, but I'm not excited about giving him those.

melaniesilvers Rookie

Oh, and I should clarify. The ped gi stated the sucrose and lactose intolerance is only temporary. For now, he wants us to wait 2 months before adding those food back in to his diet.

Sesara Rookie

Are you sure that it's sucrose and not fructose? I know that lactose and fructose intolerance are both linked to celiac and usually brought on temporarily by damage to the intestines. Once the intestines heal, the ability to process these things is usually regained. My DS has his scope in another week and a half, but those two intolerances are something I've noticed for some time.

Most fruits have more fructose than sucrose, and it appears that a balance of the two tends to cause fewer issues. So bananas are actually one of the few fruits that generally don't cause an issue. A couple of other fruits that are more balanced are blueberries and very ripe grapes.

This is all just from reading that I have done trying to help DS. And I would imagine that you have to base it on what they can tolerate as well. DS does ok with small amounts of lactose in fermented dairy, while fresh milk will trigger 3 days of diarrhea, and too much cheese will always lead to couple of light colored stools. Too many strawberries or mango and his poop just goes right through him, with huge chunks of undigested fruit in it, but he can eat a limited amount without a major change from his usual stools (which are generally loose and sandy, but we aren't gluten-free yet).


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Kelleybean Enthusiast

Another option for sweetener might be Stevia. There are a couple of blogs with gluten free, dairy free, and sugar free recipes. I know of the Spunky Coconut and Elana's Pantry, but I'm sure there are others.

melaniesilvers Rookie

Unfortunately, he wants us to stay away from fructose and sucrose. I called my ped gi today and demanded I speak to someone that could help me. I received a call from the head of nursing who was VERY HELPFUL. He told me that since my son's gut was very sick they wanted to take out everything that would trigger a reaction (and also because he tested to positive to the lactose and sucrose test - still not sure what the test is called). He told me to first take out lactose and then call him back in a week to see how my son was doing. If I was seeing steady improvement, then we could think about just doing lactose free for another week. He said that when I start sucrose, I need remove as much as possible but it's not like gluten (a little sugar won't hurt him) He told me to focus on removing table sugar and limit fresh fruit to only once every few days. I'm relieved my son can have small amounts of sugar.

I just want to do everything perfect. I feel like I'm slowly getting this gluten free diet, but too much too soon is scary. I'm also feeling pretty confident about lactose free since my son drank a full glass of lactose free milk and didn't notice. Thanks for the support. This group has been so helpful through this scary transition. I can't wait for my son to start gaining weight and playing like his friends. :D

  • 5 years later...
Hi2U Newbie

I'm gluten, sucrose, lactose and fructose free. I have been for a few months. Here are some things that are okay to use with that diet...

F.G.Roberts Gluten Free Flour (which is amazing!)

Schar Gluten Free Crackers (good for snacks)

Poppin Popcorn is fine (I usually use Sea Salt but I think Butter should be fine)

There was a cake that I had for my birthday that was delicious and all these things free... I might have to look at that later and tell you about that one... it was chocolate flavour so I think your son would like that... ;)

kareng Grand Master
52 minutes ago, Hi2U said:

I'm gluten, sucrose, lactose and fructose free. I have been for a few months. Here are some things that are okay to use with that diet...

F.G.Roberts Gluten Free Flour (which is amazing!)

Schar Gluten Free Crackers (good for snacks)

Poppin Popcorn is fine (I usually use Sea Salt but I think Butter should be fine)

There was a cake that I had for my birthday that was delicious and all these things free... I might have to look at that later and tell you about that one... it was chocolate flavour so I think your son would like that... ;)

The post you are responding to is from 2012.  The OP may not still be around .

Ennis-TX Grand Master
6 hours ago, Hi2U said:

I'm gluten, sucrose, lactose and fructose free. I have been for a few months. Here are some things that are okay to use with that diet...

F.G.Roberts Gluten Free Flour (which is amazing!)

Schar Gluten Free Crackers (good for snacks)

Poppin Popcorn is fine (I usually use Sea Salt but I think Butter should be fine)

There was a cake that I had for my birthday that was delicious and all these things free... I might have to look at that later and tell you about that one... it was chocolate flavour so I think your son would like that... ;)

Again this is old post, but you hit a bit home on my diet. Note if sugars are a issue in your diet you should probably remove all carbs and look up keto based foods.....stuff made with grains or carb based foods are going to cause you issues still. I have some recipes on my site profile blog that could be helpful that are free of those, Feel free to look them up.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748

    CRae
    Newest Member
    CRae
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.