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!

Confused in Iowa

Recommended Posts

Confused in Iowa Rookie
Confused in Iowa
Posted

OK - Just got the results from a retest for my son's Celiac Disease. It's still showing pretty high. Now trying to think of where he is getting some gluten. Does anyone know if Fruit By The Foot (like a fruit roll-up) has gluten in it???? We've been working so hard at elminating gluten...so was a little disappointed to hear his numbers haven't dropped. I'm really not educated on the correct words to use, but they want him at 7 or less and he's still at 25. That's about the only thing I can think of that he would be eating.

Also, whats the thoughts on oatmeal???? I've seen some places where it can be eaten in moderation. :(

He was just diagnosed in August, so I'm really new to all this. I'm lucky he doesn't get physically sick when he gets gluten.......

Thanks everyone for your help!

:(

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

The oatmeal may be causing some problems. There is a high risk in cross contamination is the growing and processing process. (oats and wheat in the same fields)

We are past the roll-up stages around here, so no help from me.

Nikki2003 Contributor
Nikki2003
Posted
The oatmeal may be causing some problems. There is a high risk in cross contamination is the growing and processing process. (oats and wheat in the same fields)

We are past the roll-up stages around here, so no help from me.

I looked up the ingredients and pretty sure they are gluten free. But I guess their labeling can change.

Celina

what else could it be?

Guest nini
Guest nini
Posted

fruit by the foot should be fine, although there are probably other areas where the gluten may still be hiding, Oatmeal is a biggie, any cereals with barley malt in them are a no no, do you have a separate toaster for gluten breads and a new one for gluten-free breads? Cutting boards? Wooden spoons? Have you verified vitamins, lotions, bath products?

Juliet Newbie
Juliet
Posted

From what I understand Fruit By The Foot is OK. I don't know about other brands, though. I normally get the fruit leathers from Trader Joe's (I don't know if you have one where you live). As for oatmeal, you can get some uncontaminated sources of Oats like from glutenfreeoats.com, but it's expensive! Some people have stated that McCann's steel cut oats are OK, but others are saying it isn't. From everything I've read about oatmeal, too, it's only supposed to be eaten in moderation (1 cup cooked per day for an adult). That isn't enough to eat for one meal by my 3-year-old Celiac son, so I just avoid oats altogether. He likes to eat a lot of Cream of Rice (by the same people who do Cream of Wheat). I make it with milk instead of water and add flavorings and a little sugar. It's one of his favorites.

And his numbers didn't go down to the level they were looking for until after he had been gluten free for six months, although we saw an extreme immediate improvement after being on the diet for less than two weeks. I was making a lot of little mistakes, that added up, for the first 3-4 months. It gets easier, I promise!

lovegrov Collaborator
lovegrov
Posted

Stay away from oatmeal in the U.S. It's contaminated, and even if it's pure, some celiacs can't tolerate it.

richard

taweavmo3 Enthusiast
taweavmo3
Posted

I think it's still a little early in the diet to be retesting already. Just my two cents......but I thought you needed a good six months at least before levels could reach normal. If we had tested Emmie that soon after, I'm sure her numbers would have been elevated too, b/c I made quite a few mistakes in the beginning!

I would definately recheck everything he's eating, but if you can't find a gluten source, maybe all you need is more time.

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

Celiac.com Sponsor (A8-M):


rez Apprentice
rez
Posted

where are you at in IOWA? We live in Iowa! We're from Bettendorf. :)

Confused in Iowa Rookie
Confused in Iowa
Posted
  • Author
where are you at in IOWA? We live in Iowa! We're from Bettendorf. :)

We are in Woodward - a small town about 25 miles northwest of Des Moines.

I bet it is the oats......Plus I'm sure I've made some other mistakes...such as using Nestle butterscotch chips......just realized that one a few weeks ago...so I'm sure where he's getting his gluten is from stupid things that I've done like that in reading labels.

I'm so glad that Fruit By The Foot is ok......He eats that alot...even tho he's diabetic, he uses that for a quick pick up before he does his sporting events.

I guess tho by this test coming back still elevated, it has proven to me that even just a little is as bad as a bunch.......so we'll keep working on it.......it makes it hard when he doesn't get physically sick from gluten, he gets more the mental part of it where he can't concentrate and irritible. But I'm so lucky he doesn't get physically sick.....count my blessings there for him.

Thanks everyone for your help! Appreciate it!

KaitiUSA Enthusiast
KaitiUSA
Posted

Fruit by the foot is made by Betty Crocker and they are a part of General Mills and will not hide anything so unless the label says wheat, rye,barley, or oats they are ok. Also, oatmeal made in the US in a no no because they are highly contaminated with wheat...if you do oatmeal( I stay away from it) then you need to go with a bran that is grown, transported, and in a facility without wheat.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • 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.