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Glutened Her Again...

wsieving

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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!!!!

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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.

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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!

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      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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