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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.