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

Gabe Got Glutened


FoxersArtist

Recommended Posts

FoxersArtist Contributor

I had just gotten finished explaining to my mom how frustrated I have been that no one seems to feed Gabe only the foods I pack for him. They insist on feeding him some of their food too. She agreed that it sounded like a valid frustration but hours later she fed my son some "rice" cereal. When I came back to pick up my baby he was wandering around with a bowl of the stuff in his hand and my mom informed me that he was eating rice cereal and all it was was puffed rice. She got out the package to proudly show me that it was gluten free. "Wheat free" I read out load on the front of the box. OH NO! Wheat free almost always means NOT gluten free. Sure enough I flipped the box over and the SECOND ingredient was BARLEY MALT! AH! I totally panicked, watching Gabe closely to make sure he wasn't going to have an instant reaction. No breathing problems, no swelling...whew.

I have to say, despite the relief I felt that Gabe was not going into an allergic shock, I cried because I knew that I would have a monster on my hands for the next week, and sure enough, the past few days have been miserable.

When my little 2 year old son gets glutened, he reverts to a semi-autistic state and becomes quite irritable, crying at every tiny little thing that does not go his way and a few things that do! In the past few days he has stopped using his words, he staggers when he walks and falls down a lot, he refuses to make eye contact and stares off into the distance as if lost in thought or half awake. He hasn't been eating - just playing with his food or staring off into nowhere land. He screams to go down for a nap and then screams when I put him down for a nap. He screams when I pick him up to be put down and screams to be picked up as soon as he is down. He follows me everywhere acting sooo clingy but then doesn't want me to comfort him. He hits his baby sister repeatedly, shouting "NO, NO, NO!" or rips toys away from her while scolding her (usually he is very gentle with her.) Last night he suddenly whipped his head to the side toward our livingroom windows that were at the front of the house. He looked afraid like he saw something out the window that took him off gaurd. I looked and didn't see anything, but he just kept his eyes pinned on that window, motionless. It was enough to scare the heeby-jeebies outta me since hubby was at work! How on EARTH did I do this for so long before we found out he had celiac?!

I made my mom come over this afternoon so that she could see how miserable he was. I don't want her to feel guilty but I do want her to understand what her grandson goes through when she is careless. She promised never to give him any of her food again without my permission first. I hope she holds to it and I hope Gabe gets back to normal soon.

-Anna


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator
I had just gotten finished explaining to my mom how frustrated I have been that no one seems to feed Gabe only the foods I pack for him. They insist on feeding him some of their food too. She agreed that it sounded like a valid frustration but hours later she fed my son some "rice" cereal. When I came back to pick up my baby he was wandering around with a bowl of the stuff in his hand and my mom informed me that he was eating rice cereal and all it was was puffed rice. She got out the package to proudly show me that it was gluten free. "Wheat free" I read out load on the front of the box. OH NO! Wheat free almost always means NOT gluten free. Sure enough I flipped the box over and the SECOND ingredient was BARLEY MALT! AH! I totally panicked, watching Gabe closely to make sure he wasn't going to have an instant reaction. No breathing problems, no swelling...whew.

I have to say, despite the relief I felt that Gabe was not going into an allergic shock, I cried because I knew that I would have a monster on my hands for the next week, and sure enough, the past few days have been miserable.

When my little 2 year old son gets glutened, he reverts to a semi-autistic state and becomes quite irritable, crying at every tiny little thing that does not go his way and a few things that do! In the past few days he has stopped using his words, he staggers when he walks and falls down a lot, he refuses to make eye contact and stares off into the distance as if lost in thought or half awake. He hasn't been eating - just playing with his food or staring off into nowhere land. He screams to go down for a nap and then screams when I put him down for a nap. He screams when I pick him up to be put down and screams to be picked up as soon as he is down. He follows me everywhere acting sooo clingy but then doesn't want me to comfort him. He hits his baby sister repeatedly, shouting "NO, NO, NO!" or rips toys away from her while scolding her (usually he is very gentle with her.) Last night he suddenly whipped his head to the side toward our livingroom windows that were at the front of the house. He looked afraid like he saw something out the window that took him off gaurd. I looked and didn't see anything, but he just kept his eyes pinned on that window, motionless. It was enough to scare the heeby-jeebies outta me since hubby was at work! How on EARTH did I do this for so long before we found out he had celiac?!

I made my mom come over this afternoon so that she could see how miserable he was. I don't want her to feel guilty but I do want her to understand what her grandson goes through when she is careless. She promised never to give him any of her food again without my permission first. I hope she holds to it and I hope Gabe gets back to normal soon.

-Anna

I feel for you. I am so sorry. My child is fortunately old enough to say no for himself. At times like these I try to concentrate on the positive. How good it is that we now know the source of the problem. It is great that he is not like that all the time and he will be better again soon(?). My son was so skinny all his life and now he is finally putting on weight. We didn't find out what it was until he was 10, but he had been having symptoms probably since he started eating wheat. You are fortunate to have found out at a younger age.

Stephanie

CeliacMom2008 Enthusiast

I'm so sorry for you and Gabe and even your mom too. I'm sure she feels awful, but I think it's a good thing you let her see what he's like. Seeing is believing and will make a lasting impression.

Hang in there...time will cure this!

April in KC Apprentice

Poor little guy! Hope he's better now. It's sooo hard to get people to understand the strictness of the gluten-free diet. I used to get so frustrated with family members...

Anna, here's a little tip I have discovered for working with grandmas (both of them). Grandmas like to give grandkids treats, something they're not already given at home...something that will make her home "special." A while back, we identified a really good brand of gluten free cookie mix and gave several boxes to one of the grandmas, along with the right oil, parchment paper, and some new "dedicated" kitchen ware to make the cookies with.

We casually stated that we wouldn't be feeding the kids those cookies at home, that they would be grandma's special treat. Let me tell you...it works great! The kids look forward to their sugar cookies from grandma's, and she isn't tempted to feed them something else. An added bonus is that sometimes fresh baked sugar cookies find their way home in the kids' bags. ;-)

Over time, we have rolled out a few additional treats & drinks in this style...we don't give the same things at home, to preserve their specialness. It allows the family members to have that special bond over food that others have.

Also, it helps smooth out those past times when you had to reprimand family members for feeding the wrong things...it shows the family members that you understand their desire to have a special bond with your kids... which in the end is a great thing.

Don't know if that helps or not...DH and I feel like any tricks that keep the kids from getting glutened are good ones.

ShayFL Enthusiast

Yes....she meant well. It isnt easy for anyone. Poor Gabe. I hope he is better soon.

Im invited to a dinner party Friday....our host said, I will fix a gluten free dish for you. And I just have to say.....It is always better for me to cook for myself, so I can relax and enjoy your good company. Im coming to see you guys....not for the food. But fix something yummy for DH and DD. I just dont want to even let them try........

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,136
    • Most Online (within 30 mins)
      7,748

    Jamy
    Newest Member
    Jamy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Sarah Grace
      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      @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.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      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
      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.
×
×
  • 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.