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Grandparents And Celiacs


Guest Zmom

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Guest Zmom

Anyone else have to deal with grandparents who refuse to wash their hands after eating gluten?

Even after my Doctor wrote them a letter? Even when their Grandson asks. They think we are exaggerating and his Grandmother even Grabbed and held my son's hand after eating a piece of bread when he asked her to wash her hands. totally frustrated. Any suggestions?


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KaitiUSA Enthusiast

How rude(if it is on purpose)....I can't believe they would not follow something to help their grandson. This may make them mad but personally I would say..."This can make him very sick and if you can not respect that, as much as we hate to do this, then we will not be allowing him over anymore."

At this point they are blowing it off like its nothing. If they realize that this is serious and if they don't follow it then they won't get to see him then hopefully they would change.

This is just my opinion...there are other ways you could approach it.

Guest nini

Shoot, I have a HUSBAND that forgets to do that...

as far as grandparents go... that's a whole "nuther" can of worms... I don't think they do it intentionally, but they def. expose my daughter to gluten by some of their actions... My mom's house is SOOOOO Not gluten free, even though I've stocked her up with safe snacks and such, they still have an abundance of gluten laden goodies laying around and they will munch them, not wash hands OR MOUTH and will hug and kiss her all the time I'm just wigging the entire time. I feel like I can't relax.

Guest taweavmo3

My parents were alot like that, unitl Emmie got really sick a few weeks ago. They never intentionally gave her gluten or anything, they just didn't understand the seriousness of it. If Emmie broke out in hives or had trouble breathing, it would be easier for them to "get" I think.

Last time Em's spent the night, the next day she was very lethargic, was crying/screaming all day, and wouldn't eat. This lasted for nearly two weeks. So, now they totally get it. They are so good now......she spent the night again last weekend and my parents made a special trip to the store to load up on gluten-free goodies before their outing.

I don't know what I would do if my parents actually refused to comply with washing of their hands.........I guess I'd have to tell them that my kids couldn't come over until they took the disease for the seriousness that it is. My parents didn't do anything intentional, they really just didn't know or they would forget. As hard as it was seeing Emmie so sick, at least it opened my parents eyes to the disease and how much havoc it can cause on such a little body. That was really the only thing that worked.

wclemens Newbie

Okay guys, listen to this...I am Dakota's 60 year old grandma, and it was I who sent away for the $378 spectrum of tests which identified that Dakota has gluten intolerance and allergies to milk and dairy. It was I who spent his first 11 months of life as his primary daycare provider, watching like a guard-dog to make sure he stayed on his diet. Then at 1 year of age his parents put him into preschool and stopped his special diet after a Kaiser doctor gave him a blood test and said he didn't have Celiac. Now I'm keeping him again 1-2 days a week, and can't help but feed him gluten-free, milk and dairy-free foods (I have had the same intolerances since the age of 8).

I am once again creating special foods for Dakota and even leaving them in special containers in the refrigerator at his family's home. I know that no one else in the family realizes that Dakota's eating forbidden foods can have truly drastic effects, but since my symptoms are asthma and wheezing when I eat those foods, they realize that I must stick to my special diet.

It is a day-by-day journey. We must do what we can, no matter how big or small, and these family members are looking ultimately to us for patience, steadfastness, understanding and TOLERANCE. Lord help us to be the examples we can be! I am so glad you are all there. Welda Lou

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    • marion wheaton
      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
      @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
      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
      @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
      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 
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