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

Just Starting Out, How Careful Do You Need To Be?

PLGW2012

By PLGW2012
in Coping with Celiac Disease

Recommended Posts

PLGW2012 Rookie
PLGW2012
Posted

My 8-year-old daughter was just diagnosed with celiac disease, and I'm overwhelmed (which I'm sure is very common). How careful should I be? Do we need to keep food separate, use different utensils, avoid French fries that may have been contaminated in a fryer, etc?

She doesn't really have symptoms, so I don't think it will be super obvious when we accidentally give her gluten. But is a basic diet good to start with, or do I need to start checking her lip gloss ingredients?

It just kind of hit me last night - we web to Applebee's for 99 cent kids night, and there was nothing on the kid's menu that wasn't full of bread and/or breaded. It was like a kid's gluten free for all.

I know I need to learn where it is safe to eat and where it isn't , but how careful do I need to be in other areas?

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

Celiac.com Sponsor (A8-M):


cavernio Enthusiast
cavernio
Posted

"Do we need to keep food separate, use different utensils, avoid French fries that may have been contaminated in a fryer, etc?"

Pretty much. Most dishes can be cleaned thoroughly enough though, but then you have to use a separate or clean cloth for them. Things like scratched frying pans or baking sheets that get that brownish coating on them though aren't safe. Neither are mesh colanders or anything wooden. Unless it's a glass cutting board that won't be safe for her either.

 

Most restaurants aren't safe to eat, don't even try right now.

 

She absolutely shouldn't be wearing lip gloss that has gluten. The ingredient list might not mention gluten but that doesn't mean it will be safe. Scents often have gluten, and they'll just say 'perfume' or whatever. Easiest thing is to only get lip gloss that advertises as gluten free. (I'm personally not a fan of going through ingredients for most foods anyways, "may contain traces of" is entirely voluntary on labels. Fresh food is the only guaranteed safe food.)

 

Make sure she washes her hands before eating anything. Get gluten free soap.

gancan Apprentice
gancan
Posted

Yes you do have to be extremely careful. In my case my entire family eats anything and I have to be the careful one which is overwhelming for me since I am the mother who makes everthing for everyone else! I am constantly washing my hands, cleaning utensils,  running out of clean dish towels etc... I have never ran my dishwasher so much in my life!

 

I would recommend making simple meals for now while you're all adjusting especially her instead of buying up all the gluten free versions of breads, crackers, cookies... for an 8 year old she may want all that stuff but it can be costly. I make a lot of dinners with sides of potatoes or rice so that it satisfys everyone and I don't have to be as careful while preparing the dinner since its all gluten free.

 

Best of luck to you! :D 

PLGW2012 Rookie
PLGW2012
Posted
  • Author

Oh my gosh, gluten free soap? It looks like diet is only part of it then. She loves lip balm and Chapstick (I shouldn't have said "gloss", she's only 8 so it's not like she's wearing makeup. So I'm gathering that basically anything that could potentially get n her mouth could cause problems, right?

Her dr is a self-proclaimed "celiac expert" but he only mentioned diet, not soap or anything else!

kareng Grand Master
kareng
Posted

Oh my gosh, gluten free soap? It looks like diet is only part of it then. She loves lip balm and Chapstick (I shouldn't have said "gloss", she's only 8 so it's not like she's wearing makeup. So I'm gathering that basically anything that could potentially get n her mouth could cause problems, right?

Her dr is a self-proclaimed "celiac expert" but he only mentioned diet, not soap or anything else!

Most soap is gluten free. Maybe some specialty soaps that have wheat germ oil. Might want to skip the oats in soap or lotion. I use Chapstick. They used to say they were gluten-free but last I looked they didn't. They didn't change the ingredients, they just don't test for gluten so they don't want to say that.

langone7 Apprentice
langone7
Posted

It depends really on how bad she is.  I am not super careful myself, in the way that when I cook I am sure that there is occasional cross contamination.  While, my symptoms are miserable night sweats, severe fatigue, bloating, nausea  etc. The occasion cross contamination does not affect me, however that is different from individual to individual.

langone7 Apprentice
langone7
Posted

But yes my soap, shampoo, makeup everything is gluten and dairy free...but like I said there always that occasional oops moment (and yet I seem to be okay), but I wouldn't reccommend the risk

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

Celiac.com Sponsor (A8-M):


cavernio Enthusiast
cavernio
Posted

I think it would be really important for her to also know to not eat anyone else's food at school or daycare or wherever. I don't have kids myself, but 8 seems just old enough that she can really grasp the seriousness of eating something bad for her, and for you to teach her what foods she can and can't eat.

 

Yes, I have found out that many soaps are gluten free, pretty much any soap company I've contacted says gluten free. Most companies are pretty good at giving you gluten info and are prepared for the question, and will have up-to-date info about their products also, unlike the internet. Hand and dish are the ones that I would say are pretty necessary to be gluten free, others not so much. Oats seem to be in lot of lotions for some reason.

 

I was thinking of lip smackers, I wore that stuff as a kid. and it smells like candy, and invariably I always tasted the candy-smelling lipstuff to see if it tasted as good as it smelled.

LauraB0927 Apprentice
LauraB0927
Posted

Definitely check all the lotions and toothpaste as well - Colgate regular paste is gluten free...not sure if this applies to her or not but Play-Doh also contains gluten (I was surprised when I found that out too) and is made from wheat flour - so if she plays with it, then you'd need to remove that as well.  (I'm a child therapist and can no longer use Play-Doh in therapy with my clients)  There are recipes online for you to make your own gluten free version.  Also double check any medications that she takes - some medications use gluten as a filler for the pill, just check with the pharmacist each time she gets a medication (whether prescription or OTC).  They may need to call the manufacturer to confirm.  I know it seems overwhelming now but you'll get used to it!!    

PLGW2012 Rookie
PLGW2012
Posted
  • Author

Thanks for all of the info. I can already tell this is going to be a challenge. Last night at dinner at a restaurant (after I'd researched what she could eat) my husband handed her a breaded mozarella stick and she ate it before I could stop her. My husband and friends were saying, "Oh, it's  a process, we'll get used to it."

 

But after the dr told me to look at it like it was poisoning her, I don't think it should be a process, I think we should just get rid of it all now and never let her have it again! I think the hardest part will be teaching her and the rest of the family to watch for gluten.

LauraB0927 Apprentice
LauraB0927
Posted

If you have a smartphone (Iphone or Android) they have these really great gluten free apps that help you with researching ingredients or places to eat.  I use Gluten Free Registry (its free) and you put in your current location (or location that you wish to dine in) and it will pull up all the places in the area with gluten free menus, plus reviews of how other's experiences were with the restaurant.  It has helped me avoid some pretty shady places!  But its also come in handy - after bowling with friends they wanted to find a place to go eat, so I just took out my phone and within 5 minutes I found a local steakhouse within 10 mins of the bowling alley that had a certified gluten free menu.  It turned out great!  I hope this helps!

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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,020
    • Most Online (within 30 mins)
      7,748
    Ericaa
    Newest Member
    Ericaa
    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
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.