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

Still Reacting After Saturday Night....

cherie012

Recommended Posts

cherie012 Apprentice
cherie012
Posted

:( My little man seems SO miserable. :( He's got his GI symptoms, the raw rash on his bottom, belly aches ( didn't know he hurt before, but now I do! ) Going to bed really early, not sleeping well, drinking TONS ( well, with diarrhea like he as it's no wonder...)

Is it normal to react like this~ strongly it seems and for a good bit of time, over such a small amount after being gluten-free for 2 weeks? I am beginning to fear he won't go back to being "normal" :(:(:( He's so miserable, and my heart is breaking.... :(:(

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted
:( My little man seems SO miserable. :( He's got his GI symptoms, the raw rash on his bottom, belly aches ( didn't know he hurt before, but now I do! ) Going to bed really early, not sleeping well, drinking TONS ( well, with diarrhea like he as it's no wonder...)

Is it normal to react like this~ strongly it seems and for a good bit of time, over such a small amount after being gluten-free for 2 weeks? I am beginning to fear he won't go back to being "normal" :(:(:( He's so miserable, and my heart is breaking.... :(:(

everyone reacts differently, but yes, it is "normal" for us... not "normal" for everyone else though... What was it that set him off? I can't remember if I read that or not...

traveljunkie Rookie
traveljunkie
Posted

Oh poor little guy. Don't be discouraged, we all have occasional set backs. What did he have that glutened him?

Charlene

cherie012 Apprentice
cherie012
Posted
  • Author

On Saturday~ his birthday, we were snowed out of our home. He had a small ( baby small) slice of his birthday cake, about half of a roll, and some breaded shrimp.. Monday came and he got a small snitch of said B~day cake ( just a bite before I caught him~ then it went in the trash).... He was feeling much better before this.....

He's sooooooo miserable :( I swear I won't trial him EVER again if this is how it's going to be... :(

key Contributor
key
Posted

When I did that to my son the same thing happened. He was miserable for days! It was terrible and I knew he would never be given gluten willingly. My husband and I both felt sorry for him. He layed around and rollled around on the floor from his belly hurting, diarhea, etc. for a few days. It took about 4 days! Make sure that you have him 100% gluten free and no dairy until he gets back on track.

Sorry he so miserable.

Monica

shayesmom Rookie
shayesmom
Posted
On Saturday~ his birthday, we were snowed out of our home. He had a small ( baby small) slice of his birthday cake, about half of a roll, and some breaded shrimp.. Monday came and he got a small snitch of said B~day cake ( just a bite before I caught him~ then it went in the trash).... He was feeling much better before this.....

He's sooooooo miserable :( I swear I won't trial him EVER again if this is how it's going to be... :(

So you know, Cherrybrook Kitchen makes an awesome Gluten-free Casein-free cake mix and frosting that would be safe for your little guy to have and tastes like regular cake. It is considerably more expensive but for once a year is well worth it. If you have a lot of people coming over for cake, you could make two separate cakes or make a tiered cake with one gluten-free tier just for your ds (just be sure to use some sort of separater so that his tier doesn't get contaminated. I did this one year for my dd's birthday and it turned out awesome. Plus, no one was the wiser. I made a giant daisy cake with the center cake being gluten-free. Everyone was all excited about how the cake looked and never knew that I'd done it specifically to keep dd gluten-free.

It's also interesting to see that no one noticed the entire menu was free of all of dd's other allergens. They all were quite happy with the food and none the wiser that they had stepped into an allergen-free party. lol!!

Hope your little one feels better soon. I think that birthday parties are the roughest thing to deal with when it comes to celiac's. You can control it at home but everyone else's cake is always off-limits and such a bummer. :(

happygirl Collaborator
happygirl
Posted

I hope that your son continues to feel better each day!

If I were to ingest breaded shrimp, cake, and half a roll, I would probably be sick for a solid month! Even if I get a sprinkling of bread crumbs, I'll be sick for days. So I would say it probably is normal for him to still be sick. Poor thing! Hopefully he'll be feeling better for Christmas. :)

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

Celiac.com Sponsor (A8-M):


taweavmo3 Enthusiast
taweavmo3
Posted

Yep, sadly that sounds completely normal for a celiac reaction. For my daughter, the longer she was gluten free, the stronger her reaction became. Now I would say it takes her a good solid month to completely get back to normal, and two weeks for the physical reactions to subside. Wish I had video of her moaning in pain to show all the family members who look at me like I'm being paranoid when I won't let her have a "little" piece of b-day cake!

At least you have some answers now, and can continue down the gluten free road with complete confidence. Give your little man lots of cuddles for us, and hope he feels better soon!

cherie012 Apprentice
cherie012
Posted
  • Author

Thanks so much for the info~ it helps. I think I was beginning to panic that his "recovery" after being gluten-free was a fluke~ even though he's never been so normal in his life... I was afraid the dreaded medication topic would come back around... :( I will give it some more time, and strictly gluten-free from now on...

As for the reasons why he was glutened~ we were snowed/iced in at my MIL's home, no gluten-free items to substitute. We figured since we were going to trial him anyhow, may as well let him have his goodies on his birthday since that is what was available. I thought I was giving him a LITTLE bit~ he's a very small 2 year old and didn't figure he could eat enough to do lots of damage.. Boy, was I wrong. :o Lesson learned. ;)

Merika Contributor
Merika
Posted

So you know, Cherrybrook Kitchen makes an awesome Gluten-free Casein-free cake mix and frosting that would be safe for your little guy to have and tastes like regular cake.

Yumm, I haven't heard of this brand. I'll have to check it out :)

shayesmom Rookie
shayesmom
Posted
If you have a lot of people coming over for cake, you could make ....make a tiered cake with one gluten-free tier just for your ds (just be sure to use some sort of separater so that his tier doesn't get contaminated.

Ackkkkk...never ever ever ever ever ever do this! :o i can see no way to avoid contamination. Have separate cakes or just one gluten-free cake.

LOL!! Normally I would agree but I did find a way to use a glass stand for Shaye's gluten-free cake that completely separated AND elevated her cake away from the lower tier of regular cake. The stand (I believe it was intended as a covered cake stand or possibly even a cheese dish) had a glass lid on it that also kept her cake quite safe from the cake below it. Wish I could post a pic of it as it turned out really well and dd had no issues with being glutened by it. Paper separators would not be an option for sure and it would of course be absolutely necessary to have separate knives and cake serving utensils. I should have been more specific. Thanks for pointing that out Merika!

My husband's grandmother used to make the coolest cakes for him. One year she took bread pans and made separate cakes in the shape of a train. So that could easily be adapted to have a gluten-free train car for the celiacs in the family. For girls you could use flowers or heart shapes and if you have stands....have the cakes "cascade". Heck, I've even done a disney princess castle which I think I could adapt to have a separated gluten-free portion. It takes a bit of time to do these things but most cake mixes freeze quite well and so you up to a week (maybe more) to get the whole thing together. My dd was ecstatic about her birthday cakes as not only was cake on the menu for her that day, but she was all excited about the presentation as well. Makes for a memorable occasion.

cherie012 Apprentice
cherie012
Posted
  • Author

Well, it took a little longer than last time to clear up, but he FINALLY did. So, I am certain we will steer clear of all gluten from now on, it is just TOO much on his little body. :( Thanks to all and the wonderful info!!!

Just a quick question on gluten-free cake~ can you make it, and freeze it? I mean, so that he can have a little bit at other parties, like his sister's bday? I'd hate to make a whole/big one and have it go to waste.....

jerseyangel Proficient
jerseyangel
Posted

I've never tried to freeze gluten-free cake, but I would think that it would be no different from regular wheat cake. If you package it well and don't keep it too long (as you would normally do) I think it should be fine.

shayesmom Rookie
shayesmom
Posted
Just a quick question on gluten-free cake~ can you make it, and freeze it? I mean, so that he can have a little bit at other parties, like his sister's bday? I'd hate to make a whole/big one and have it go to waste.....

Yes, it can easily be frozen. I slice up the cake into individual servings, wrap them in sandwich bags and then freeze in either some freezer-safe tupperware or in foodsaver bags so that Shaye can have desserts for other occasions. I have also made gluten-free cupcakes and done the same. It keeps just fine in the freezer if wrapped properly. I do this with gluten-free cookies too as well as pancakes, casseroles, soups (in mason jars), etc.. I've also made it a point when I bake to wrap up separate containers to go to my mom's and mil's homes so that they also have treats for Shaye when she is over. It also gets me out of a "bind" should we ever stay over longer and are in need of gluten-free food for Shaye outside of our home. Even some snack-size bags are useful for trips to the mall or other friends' homes. It's nice to have the extras around to gain a little more "freedom" as far as leaving the house or on the days when cooking isn't feasible (it happens! lol!!).

In reality, the gluten-free food doesn't keep as well and so freezing is a necessity for me. I would watch it on the brownies though as they only keep for about 2 months in ziploc freezer bags before getting that stale taste. The rest seems to keep longer.

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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    2. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    3. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    4. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    5. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748
    maggie23
    Newest Member
    maggie23
    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

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.