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I've Been Glutened....

amandabear20

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amandabear20 Rookie
amandabear20
Posted

Last night, my boyfriend Kevin and I were at a friend Ryan's house. Ryan's son was eating pretzels. Kevin had a few of those pretzels. Later that night when we were saying goodnight, I kissed him...forgetting that he had eaten pretzels. Not too long after that when I got home, My head started hurting pretty bad, and I felt nauseas and dizzy, and weak. This morning, I didn't feel any better. Im assuming this is going to last for a while, because I have felt fatigued, weak, tired, dizzy, sick all day. I even had to leave work early because it was bothering me that bad.

I was very careful today with what I ate....I'm still feeling icky. At work my moods starting changing. I got very irritable and depressed at the same time. This is the first time I've been seriously glutened since I started eating gluten free.

This is getting hard to deal with, because people at work don't understand what's going on. Even Kevin's mom is ignorant about it. It's really annoying and frustrating =(

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YoloGx Rookie
YoloGx
Posted

This has happened to me so many times. It really is a learning curve. It helps determine who you can really trust and who not. Mainly though you have to train your boyfriend etc. Let him know how awful you feel when cross contaminated (CC) with gluten this way and its probable cause. Not to make him feel guilty but to get him to be extra careful. If he cares he will improve and also be there to remind you. If he doesn't care--well, do you really need him?

Try to make it a habit to wash your hands before putting anything to your mouth when around gluteny others etc. especially after say they have shaken your hand. From my experience I have found it is wise make a habit to bring my own food and drink. I have even gotten glutened by a boyfriend who "graciously" "helped me" by opening my bottled water. Now if someone hands me bottled water (esp. by the top) I excuse myself and go wash the bottle off (I politely I don't tell them of course unless its an already established boyfriend etc.)--or just don't drink it. Its just easier however to bring my own in the first place however...

Its necessary to learn since not only can these CC situations make you temporarily really out of it but it puts one at much greater risk of getting some stray bug. It may be hard socially (and hey it really is!) but its worse to get sick unnecessarily...

jststric Contributor
jststric
Posted

yes, it's a learning thing, but you'll get it and life does get some easier. I've been dealing with mine for about 3 yrs and really have only gotten a decent handle on it in the past 6-8 months. CC is SO individual. You and the pp sound VERY sensitive. But I did have to start asking my husband to brush his teeth before we got intimate because it was the only possible thing left to some of my lingering symptoms. And it helped! I admire ANY boyfriend/girlfriend that tries to live and deal with someone like us!! It's alot to ask of people that aren't already part of the family!! My own mother doesn't get it and gets irritated by my "high-maintenance" anymore. Just let people like that roll off your back. Some people are just not capable of understanding. Oh! There's is a GREAT gluten-free pretzel made by Glutino! : ) Best wishes!

leadmeastray88 Contributor
leadmeastray88
Posted

This has happened to me so many times :)

Even just last night my boyfriend and I went out for supper and he had a chicken club sandwich...and I made him use mouthwash before I'd kiss him goodnight :)

It's just a habit that you have to get into! And if he's worth it he won't mind :)

amandabear20 Rookie
amandabear20
Posted
  • Author

Thanks everyone for the support! It was kind of like....I really wanted to kiss him and I totally forgot about the pretzels for that moment. It's hard when all I wanna do is kiss him! He has been brushing his teeth after meals for me, but if he forgets he wont let me kiss his mouth, just cheek kisses and forehead kisses. We've been together for almost 2 years so he had no problem adjusting to the way I have to eat. He just wants to help me.

So mouthwash will work if he doesn't want to brush his teeth yet? I never thought of that.

I have the same thing with my mom not understanding completely....she doesn't fully get it. And people at work are just ignorant about it. I try to explain it to them, but they just deny that its true and they think im making it up. Im just starting to ignore them.

I'm starting to feel better, I still feel a little wiped out and tired. I've been sleeping till late morning ever since that night. I'm hoping work isn't too bad tonight. My mood seems better....just a little brain fog-ish.

I really appreciate everyone's support. It really helps.

:)

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    • 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!
    • 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 
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