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

Glutened Her Again...

wsieving

Recommended Posts

wsieving Contributor
wsieving
Posted

So I guess I win this year's worst Mother of the year award. We can't get more than a week and a half without ME glutening my daughter. The past couple of days DD hadn't had much of an appetite at all, which gradually got worse as the day went on last night. She started drinking more again, and by last night was sooooooo super cranky. After she refused to eat her dinner and started fussing again, DH put her in the bath tub. He called me in to look at her tummy and it was incredibly bloated... :( My initial reaction was that it must not be gluten, that the diet wasn't working, and we needed to figure out what else was the problem. But just in case I started re-checking everything she had eaten in the past couple of days. Now... please don't shoot me for this, I already feel bad enough. I had been letting her eat Doritos for two or three days! The thing is, when I grocery shop, I check the label on EVERYTHING before I buy it, even if I have bought it before. But when they Doritos were bought I had sent DH out for them and said I remembered looking at a Frito Lay gluten-free list and I thought Doritos were on that list. When he came home with them I assumed it was ok. Well, DH didn't check the label as I just assumed that he had done. I was FLAT wrong as I am sure you all probably know, but never even thought to check the bag b/c I just thought that DH had already done that and would not have bought them if they were a no-no. I had noticed that my joints had been hurting really bad the past couple of days, I just assumed it was the weather..... I just feel awful, and hopeless at the same time. DD is never going to get healed completely b/c I keep glutening her!!!!

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

Celiac.com Sponsor (A8-M):


Mango04 Enthusiast
Mango04
Posted

Here is the list of Frito Lay products not containing gluten:

Open Original Shared Link

Doritos are on there. I don't eat them so I don't know but maybe someone else can weigh in on whether they are indeed gluten-free.

To keep things less confusing, it helps me to stick to obviously gluten-free foods (more natural stuff - like fruit, veggies, rice etc. - things without really complicated ingredient lists...) Just an idea...

Nancym Enthusiast
Nancym
Posted

The "normal" type of doritos does contain gluten, it's just some of the other flavors that don't.

ShayFL Enthusiast
ShayFL
Posted

I agree. We stay clear of things with a ton of ingredients and/or chemicals. Simple is best and less worry. There are certified gluten-free corn chips that are yummy.

HAK1031 Enthusiast
HAK1031
Posted

the nacho cheese ones are not...they have wheat flour on the label (see my post on a previous thread where i managed to gluten myself with the only gluten item (those doritos) at a party thrown by a CELIAC!!!). but i eat the cooler ranch ones without a problem, although it's definitely not an everyday thing for me.

no worries, we all mess up. i know it must be harder because it's your daughter and she can't help herself. but what might help you is, while you're figuring it out, to just eat meat, fruits, veggies, and rice, with your only seasonings as salt, pepper, olive oil, and fresh herbs. Then you can start to slowly add things back in. This will give her some time to heal and hugely minimize error. but don't beat yourself up...what's done is done, and as bad as gluten is over a long term, it's not a peanut allergy where one incident can kill her. just let her heal, and then move on.

Jestgar Rising Star
Jestgar
Posted

It's a journey, not a sudden arrival. Don't beat yourself up, you'll get there.

happygirl Collaborator
happygirl
Posted
It's a journey, not a sudden arrival. Don't beat yourself up, you'll get there.

Agree. Hang in there....we've all been there. It will get easier.

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted
It's a journey, not a sudden arrival. Don't beat yourself up, you'll get there.

Ain't that the truth! :rolleyes:

It is a constant learning curve as unfortunately ingredients change as well.....but don't be so hard on yourself!!

Mistakes will happen, and as a wife and Mum to 2 coeliacs have made some!!! :)

dandelionmom Enthusiast
dandelionmom
Posted

I posted a similar post when we were first figuring out the diet. I think everyone goes through this when making this lifestyle change; there is a learning curve.

To help you avoid my mistake: I took my daughter out for ice cream and researched the safe flavors, totally forgetting that the scoops cross contaminate everything.

wsieving Contributor
wsieving
Posted
  • Author

Thank you for your all of your support. It is nice to know that I'm not the only one that made mistakes in the beginning. On the bright side of things, now that we have identified the culprit she seems to be recovering more quickly than she did in the beginning. She ate better today and seemed a lot less cranky. Hopefully this was only a minor set back!

still tiredofdoctors Rookie
still tiredofdoctors
Posted
It's a journey, not a sudden arrival. Don't beat yourself up, you'll get there.

More true words were never written . . .

Living a gluten-free lifestyle is a really large learning curve. Nikki is right, also. Ingredients are constantly changing, even within the medications that are supposed to help us. Staying on top of that is no small task. There is no magic wand that someone can wave that lets you have all the answers right at your fingertips.

I think the biggest issue here is STOP BEATING YOURSELF UP!!

If you were a horrible parent, you wouldn't give a rat's arse as to whether your daughter consumes gluten. The fact that you are learning, researching and doing whatever possible to help your daughter with this illness more than confirms that you are a very caring, loving mother. How LUCKY your daughter is to have a mother so concerned with her health and best interest.

{{{{{hugs}}}}}

Lynne

Guest Mommy2aiden
Guest Mommy2aiden
Posted

Im pretty much positive that i have given my son gluten here and there over the past week. So now i have got a list of like1 5 company's to call abotu certain things to make sure they are gluten free!

happygirl Collaborator
happygirl
Posted

This information on companies may help you regarding gluten free label reading:

Open Original Shared Link

Open Original Shared Link

MarsupialMama Apprentice
MarsupialMama
Posted

Oh boy,....I think everyone who has started this route has done this numerous times. I was in a very bad situation of having to prove to doctors that gluten was the problem with my dd (with the threat of CPS) - and yet I kept accidentally glutening her!! Every gluten accident SET US BACK 3 weeks!!! Every time she would start to improve, I would send her back to square one. I felt like crying, shooting myself, and banging my head on a wall.

Hang in there and don't feel too bad about it.....it is not a matter of "if" your child will get glutened, it's a matter of "when". It's impossible to live in a society full of gluten without being contaminated in some way, shape, or form at one time or another.

ang1e0251 Contributor
ang1e0251
Posted

I think your daughter is lucky to have a mother who loves her enough to worry over her every mouthful. DH will be more carefull next time & you can both know it will happen again. It's hard enough to deal with for oneself but a toddler, WOW! I think you're the best kind of Mom!

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
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      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...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      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....
    5. 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!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • 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!
×
×
  • 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.