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

Dilemma With Family

Yenni

By Yenni
in Coping with Celiac Disease

Recommended Posts

happygirl Collaborator
happygirl
Posted

I don't need an article to tell me a crumb will or won't make me sick...I get sick on tiny, tiny amounts. So no amount of "carefulness" is too much!!!!! You are your only (and best) advocate for your health. You must take care of yourself. Honestly, who cares what other people think when you are in bed or in the bathroom, sick as a dog, for days? Its hard to get used to...but once you do....you get over it fast!!!!! (speaking from experience).

But, since I do like articles....here's another one: https://www.celiac.com/st_prod.html?p_prodi...-52106382872.60

And, it was a relatively small sample, so its not to say that smaller amounts don't cause damage. Plus, smaller amounts *might* not cause as much damage, but still may make you sick (just a thought of mine).

Hope this helps.

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

Celiac.com Sponsor (A8-M):


Yenni Enthusiast
Yenni
Posted
  • Author
I don't need an article to tell me a crumb will or won't make me sick...I get sick on tiny, tiny amounts. So no amount of "carefulness" is too much!!!!! You are your only (and best) advocate for your health. You must take care of yourself. Honestly, who cares what other people think when you are in bed or in the bathroom, sick as a dog, for days? Its hard to get used to...but once you do....you get over it fast!!!!! (speaking from experience).

But, since I do like articles....here's another one: https://www.celiac.com/st_prod.html?p_prodi...-52106382872.60

And, it was a relatively small sample, so its not to say that smaller amounts don't cause damage. Plus, smaller amounts *might* not cause as much damage, but still may make you sick (just a thought of mine).

Hope this helps.

1/48th of a slice of bread... :blink: Thanks for the link! This all is making me feeling better about what I am doing. :)

You are right in that I shouldn't care. Some times it just gets "lonely on the paranoid side of this" if you know what I mean. I think I needed to read all of this too to feel I am doing the right thing.

:)

Jestgar Rising Star
Jestgar
Posted

Just a light note to this.

When I went gluten-free, I cc'd myself a couple times with pans, but never anything else. I was thinking I was just lucky but reading the note on the silverware reminded me....

One night, shortly before I went gluten-free, I was up in the middle of the night and went into the kitchen to get a drink of water. When I turned on the light there was a VERY well fed mouse sitting on my sink looking at me. After screaming for a couple minutes I started chasing him around the kitchen trying to catch him in a bowl. All I was able to do was chase him into my silverware drawer, and then out into the heating vents.

Needless to say, the next day I took apart my kitchen and scrubbed everything I had...

Now I'm thinking the mouse did me a favor.

Yenni Enthusiast
Yenni
Posted
  • Author
Just a light note to this.

When I went gluten-free, I cc'd myself a couple times with pans, but never anything else. I was thinking I was just lucky but reading the note on the silverware reminded me....

One night, shortly before I went gluten-free, I was up in the middle of the night and went into the kitchen to get a drink of water. When I turned on the light there was a VERY well fed mouse sitting on my sink looking at me. After screaming for a couple minutes I started chasing him around the kitchen trying to catch him in a bowl. All I was able to do was chase him into my silverware drawer, and then out into the heating vents.

Needless to say, the next day I took apart my kitchen and scrubbed everything I had...

Now I'm thinking the mouse did me a favor.

:lol::lol:

Dan Newbie
Dan
Posted

akJenny,

Your dog's markings are very similar to my dog. What breed is your dog.

Yenni Enthusiast
Yenni
Posted
  • Author
akJenny,

Your dog's markings are very similar to my dog. What breed is your dog.

She is a German Shephard/Labrador retriver mix. A "Germador Shephiver". :)

2,5 years old now. She is a "forever puppy" though.

daffadilly Apprentice
daffadilly
Posted

Jenny, you can get sick from someone with wheaty hands touching your keyboard. It has happened to me several times. The computer repair guy was here & yep then I was sitting at the computer eating a snack & ZAP...

Then there was the time I took my scrapping supplies to a weekend crop that I was teaching & the only thing they ate all weekend was wheat & then touching all my stuff. I had to come home & wash everything. I will never do that again...

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

Celiac.com Sponsor (A8-M):


Yenni Enthusiast
Yenni
Posted
  • Author
Jenny, you can get sick from someone with wheaty hands touching your keyboard. It has happened to me several times. The computer repair guy was here & yep then I was sitting at the computer eating a snack & ZAP...

Then there was the time I took my scrapping supplies to a weekend crop that I was teaching & the only thing they ate all weekend was wheat & then touching all my stuff. I had to come home & wash everything. I will never do that again...

I think I believe you. ;) Yesterday I had nasty heart burn (from probably being glutened from the keyboard/mouse the evening before) and today my body aches. Especially my back. Have a head ache too.

My husband is now instructed not to eat by the computer. :angry:;)

frenchiemama Collaborator
frenchiemama
Posted
I think I believe you. ;) Yesterday I had nasty heart burn (from probably being glutened from the keyboard/mouse the evening before) and today my body aches. Especially my back. Have a head ache too.

My husband is now instructed not to eat by the computer. :angry:;)

That is my biggest annoyance. My husband, who normally is very sensitive to my needs and understanding always would eat (gluten) while he was on the computer. He would eat, wipe his hand on a napkin, and then put his hand on the mouse or keyboard. I asked and asked and asked and asked him not to do it. He continued to do it claiming "I wipe my hands, that's good enough". Finally I just snapped and said "What on earth makes you think that wiping your hands repeatedly on the same ratty little paper napkin is actually getting them clean?? Is eating your damn sandwich while on the computer more important than my health?"

That finally got through to him. Sort of. Now he at least eats with his non-mouse hand. <_<

Creative-Soul Newbie
Creative-Soul
Posted

:blink: Silverware?!? Cuttingboards?!?!? Personal care products??!??

See why this site is priceless??? I honestly didn't know! And computer keys??? Yeah, I can see myself having a lot of fun <_< trying to explain that one... I need a lot of educating...HELP ME!!! I've been wondering why I still feel yucky sometimes even though I try so hard to be strict diet-wise...humnn..

I discovered about vitamins the hard way.I'm usually a great label reader, so the new multi-vatimin I was trying didn't have gluten,but there are many other allergies/intolerances that are being confirmed/showing up out of the blue - like Splenda, which was listed by it's generic name. For a week I was wondering what on earth was wrong with me...I was so exhausted I was sickkkk. Then it hit me. Geez.

I'm still relatively new at this - about a year - and there's so much to learn and be careful of that sometimes my head spins. I don't personally know anyone my age with Celiac /Gluten intolerance, so it's hard! Thankfully my best friend is so understanding, but I'm still trying to negotiate my way around the people I live with..it's been a slowwww process. I'm still trying to get them to understand that I can't have "even a little" bite...I've been told that," It can't be that painful that you can't taste it.." Yes, it can!!!

This is definitely an issue when it comes to dating...

I suspect - strongly - that this is my mom's problem as well, as I think about all of her health issues, but am a little skeptical as to whether she would take it seriously or not. She's suffering so much...any suggestions?

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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @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...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in...
    3. marion wheaton
      - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    4. Dorothy O.
      - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Even though my brother almost died in his 40s because of coeliac disease, no one ever told family members that we should be tested. As a result, I was almost 70 years old when an orthopaedic doctor suggested that I be tested for coeliac disease. My count was greater than 250. I had loved my bread, baking, especially pies and was never sick, but did not absorb...
    5. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,404
    • Most Online (within 30 mins)
      7,748
    Starr98
    Newest Member
    Starr98
    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

    • 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!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
×
×
  • 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.