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Dentist Visit


Kim27

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Kim27 Contributor

I have had the worst luck with people not understanding or having NO clue what I'm talking about when I ask about gluten ingredients in things. From people saying "Oh no there's no sugar in this" to telling me they checked the ingredients and everything is A-OK! because the actual WORD gluten is not listed in the ingredients!! (I wish it was that easy!!!!!) So it has happened again and I need some help. I have seen on here people talking about needing to check dental cleaning supplies while at the dentist office. I have an appointment next week (my first since diagnosis) and so I called them yesterday to give them a head-up on my new diagnosis and also to give them time to find out about the gluten in their products. Well of courseeeeee they say they've never heard of gluten and no one has asked about it before in the office. (great!) I live in a relatively well-sized city with multiple gluten free menus in different restaurants, large celiac support group, etc, so I KNOW I'm not the only one in the city that has these concerns. Anyway...... the woman says let me find out and call you tomorrow. So I get a phone call this morning from her saying that she had one of the dental assistants check the ingredients and I'm all good b/c gluten is not listed as an ingredient. Of course I have to go through the whole thing where I have to explain that gluten itself will not be listed, they need to look for other keywords etc, and could they contact the manufacturer and ask them b/c they are likely to know what sort of excipients are in things. Now, I'm waiting....... My question for everyone, what do you do in these situations? I always end up feeling like I am not getting a for sure certain answer to feel comfortable that gluten is not in things, like pills, dental stuff, etc. How do you get thru to people? HOw do you find out for sure if it's safe? I am having so many problems with this. Food is not a big deal, if I can't find out for sure I just don't eat it, but for example, I can't just stop going to the dentist forever. How do you help people get a clue??


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lovegrov Collaborator

One thing you can do is ask for a list of the products to be used and the manufacturer and call them yourself. There's much less chance of error and misunderstanding if you talk directly instead of using an apparently clueless intermediary. Do it yourself is my rule.

Anyway, as far as cleaning stuff, from my experience, if you stay away from mint-flavored things (some have gluten, others don't) and you have them use plain, unflavored pumice, you'll be all right.

richard

Frances03 Enthusiast

I guess I just dont freak out about the dentist. It's only twice a year, and I dont swallow anything they put in my mouth. I rinse really well and spit a lot, and they know I'm going to do that, so I don't worry about it.

CarolinaKip Community Regular

I have had the worst luck with people not understanding or having NO clue what I'm talking about when I ask about gluten ingredients in things. From people saying "Oh no there's no sugar in this" to telling me they checked the ingredients and everything is A-OK! because the actual WORD gluten is not listed in the ingredients!! (I wish it was that easy!!!!!) So it has happened again and I need some help. I have seen on here people talking about needing to check dental cleaning supplies while at the dentist office. I have an appointment next week (my first since diagnosis) and so I called them yesterday to give them a head-up on my new diagnosis and also to give them time to find out about the gluten in their products. Well of courseeeeee they say they've never heard of gluten and no one has asked about it before in the office. (great!) I live in a relatively well-sized city with multiple gluten free menus in different restaurants, large celiac support group, etc, so I KNOW I'm not the only one in the city that has these concerns. Anyway...... the woman says let me find out and call you tomorrow. So I get a phone call this morning from her saying that she had one of the dental assistants check the ingredients and I'm all good b/c gluten is not listed as an ingredient. Of course I have to go through the whole thing where I have to explain that gluten itself will not be listed, they need to look for other keywords etc, and could they contact the manufacturer and ask them b/c they are likely to know what sort of excipients are in things. Now, I'm waiting....... My question for everyone, what do you do in these situations? I always end up feeling like I am not getting a for sure certain answer to feel comfortable that gluten is not in things, like pills, dental stuff, etc. How do you get thru to people? HOw do you find out for sure if it's safe? I am having so many problems with this. Food is not a big deal, if I can't find out for sure I just don't eat it, but for example, I can't just stop going to the dentist forever. How do you help people get a clue??

I plan to do what Richard suggested, call the company of the products. My dental office had no clue as well.

SGWhiskers Collaborator

I call two weeks in advance for a list of all products and then make the calls myself. I've run into the problem of arriving and being placed in a booth that is stocked with different items for some reason, and making them hunt down the safe items from other booths and back room storage.

Kim27 Contributor

*UPDATE* Well the dentist office called me back again. They said that they couldn't know for sure so they were gonna fax me the product information so I could look at the ingredients. Well, I think they should have to know what is in their products, but I guess that's besides the point. I said okay, thinking I could pretty much tell from the ingredients or I would then know the manufacturer so I could call them and they would surely know. Well the manufacturer phone number was right on the sheet so I went ahead and called information. The woman was very nice and said NONE of their pastes (cleaning stuff) contain gluten and that it is written right on the box "contains no gluten"!!!! At least I know now and know it's safe, but I must say, the people at that office are either really stupid or didn't even bother to look at the box in the first place!!!!!!!!! ugh!!

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    • 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 
    • marion wheaton
      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.
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