Jump to content
  • 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):

Med Bracelets?


arismama

Recommended Posts

arismama Rookie

Just curious if any of you have purchased a medical bracelets for your children. We are undiagnosed for the time being (waiting to see the GI) but was just wondering if you felt that Celiac warrants the bracelet. (As a sidenote, my 15 mo old daughter is allergic to milk, still doing tests on that, but was given an EpiPen Jr.)

What are your thoughts on this?

Thanks!


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

For most of us, gluten is not immediately life-threatening, the away an anaphylactic allergy can be, so I don't think that - for most people - it warrants a med alert bracelet. But it's a personal decision.

Mom22 Apprentice

Our children do not wear the medic alert bracelets, however, I saw a couple of children who wore them at our local celiac support group meeting. I believe it is a personal choice, as well.

Mom 2 2

MySuicidalTurtle Enthusiast

I am 19 and wear one for demerol and am in the process of adding my celiac information to it.

Just beacuse you don't have a servere reaction to it usually doesn't mean it can't happen. It's a good idea for everyone to think about wearing one, not just children.

tarnalberry Community Regular

but celiac, being an IgA/IgG reaction, not an IgE reaction cannot cause anaphylactic shock. of course, you can ALSO be allergic to wheat, and run that risk, in which case I _would_ think a med alert bracelet would be a good idea. (I also think that if you already have one, it doesn't hurt to add on to it. ;-) )

Thomas Apprentice

It might be a good idea.

gf4life Enthusiast

arismama,

With your daughter so young and not able to talk for herself, and the possiblity that she might need an EpiPen for the milk allergy, I think it might be a good idea.

It can also help with young children in daycare and school to reinforce to the teachers and aides that it really is a medical issue and not just a dietary choice.

I have considered getting them for my children, since my middle boy is on daily meds for multiple things and both he and my older son have asthma, and my daughter and middle son also have penicillin allergy that I'm told will get worse each time they are given penicillin. The trouble has been finding a bracelet that can fit ALL of my middle son's urgent information. I can fit it all on a dog tag style necklace, but I've been told it won't help in a medical emergency, since the EMT personnel will not look for a necklace, only a bracelet...

I like the idea of the bracelet in case of a substitute teacher who doesn't want to believe my child that they can't eat a particular food. This is probably only an issue in the lower grades since the older children don't tend to get snacks in class like they do in pre-K through 2nd grade, but they do occasionally get treats for good work/behavior and they have occasional parties and outings that might include food. So far we haven't had any trouble with teachers. My kindergarten daughter had her first substitute teacher last week, but when we got to school and I realised the sub was there I explained briefly to her that my daughter cannot eat wheat/gluten/dairy and she has a special snack box that she picks from at snack time. My daughter showed her where the snack box was kept and everything was fine. My daughter is great at reminding the teacher/aides what she can't have. If they accidently give her something that contains gluten she will give it back and remind them that she can't have it and ask for a clean plate. :D

God bless,

Mariann


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



Celiac.com Sponsor (A8-M):



Ruth Enthusiast

At the advice of an allergist, I do not list gluten as an allergen or celiac disease on my children's medical alert braclets.

I only list the allergies that cause an anaphylactic reaction. (peanuts, tree nuts, pennecillin, etc.)

In case of a medical emergency, I do not want an EMT wondering what gluten/celiac is, and delay administering life saving medication because they are in doubt.

FYI: For the "immediate life threatening" allergies my kids do have, I have found some great looking/functional medialert braclets for them at this site: www.n-styleid.com

arismama Rookie

Well this has been a lot of interesting information. Thanks to all for your input so far. I thought I'd get far more "not necessary" responses than I have.

We have an upcoming appointment with the allergist to do skin testing for the milk and related allergens. Maybe something will be revealed there that will help make the bracelet decision. I will also ask the allergist what his thoughts are on this. I'd like to hear his opinion, as well as the GI when we finally get in to see him/her.

Thanks everyone!

Jennifer

arismama Rookie

Hi everyone...this was PM'ed to me from Laura (mommida). She's still getting hang of the forum, but wanted to post this. Hey Laura, if you're reading this, you can respond to the post by clicking on the "Add Reply" button at the top of the thread. It is a little hard to find if you don't know where to look. Hope that helps...Jen

"My kids 2 and 5 years of age are on a gluten free diet. Yes, a medic alert is an excellent idea. My daughter was given an antibiotic with gluten in it for an infection. Needless to say she was admitted to the hospital after two doses for dehydration. From what I have read a celiac or dermitis herpetiformis patient is also more likely to have a reaction to iodine. Iodine may be used in an emergency situation for disinfection of wounds. Please correct me if I am wrong. Anyone? An iodine patch is used to erupt the skin rash for dh testing.

Laura"

lovegrov Collaborator

I don't have a bracelet because, like another poster, I don't want anybody to hesitate to use something that might save my life (I also don't have any other allergies or conditions). In those situations they'd probably be giving you something IV or an injection anyway, and injections and IVs don't contain gluten. If your child is in a situation where a pill or liquid is being prescribed, the parent would almost certainly be there to explain and to make sure the medication is checked.

I'm not saying the antibiotic the daughter took didn't have gluten, but keep in mind that some antibiotics have terrible gluten-like affects on some people. A few years before celiac disease I had to switch antibiotics because the first one I took for an infection caused terrible diarrhea and stomach problems -- much worse diarrhea than I ever had from celiac disease.

Iodine affects only people who have DH (a small percentage of people who have celiac), only while still in the early stages of the gluten-free diet (I eat things with iodine all the time and my DH hasn't come back in three years), and primarily if swallowed. A heavy solution of iodine can raise blisters, but only if you're still early enough in the gluten-free diet that you still have deposits of antibodies under the skin. If you've been on the diet for several months this almost certainly wouldn't happen.

I would get a bracelet if I had another condition that warranted it, but won't get one for celiac disease alone.

richard

MySuicidalTurtle Enthusiast

I never thought gluten would cause anaphylactic shock but we can have severe reactions and I would like it known that I have reactions to gluten and such. . .

Then again, it's up to everyone.

Archived

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

  • 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 replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    2. - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    3. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    4. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

    michelinagiggles
    Newest Member
    michelinagiggles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...