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Celiac Is So Humiliating Sometimes


sandsurfgirl

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sandiz Apprentice

I feel your pain, since coming back from camping I think that I glutened myself. Not being extra careful with my toaster. Anyway I was at work(a seniors living facility) and was feeling bloated when one of the ladies said to her friend "she has gained weight since going on holidays". :o OMG, I felt like crying but had to keep on going with my work and remember that she has "aging problems"

I have been gluten-free for 9 months and have started to notice that I am feeling a little smaller but no weight loss yet and comments like that HURT. If only the people could see what I eat and realize that my body is healing and I don't eat bad things.

Just walk a mile in our shoes and see how it feels people :angry: . Thank god for this site so I can feel like I am not alone.


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lynnelise Apprentice

I have gotten lots of those comments before. The weird thing is a really carry most of my weight in my hips and thighs so my waist is my smaller area! I used to bloat terrible when I ate gluten and one day I was doing a tax return and the receptionist came in to ask if I had gotten one of the donuts they were handing out...well the client decides to speak up and tell me that "donut aren't good for the baby". So I had to tell him I was NOT preggo. I had another incident at a museum where a lady was trying to get my husband to sign up for a membership and asked when we were due. But instead of just saying sorry and dropping it she kept saying over and over "are you sure you aren't pregnant? You look it, really you do". I wanted to die. I cried and cried.

My most recent insulting remark was when I saw an old friend out and as we were saying goodbye he said I look great to have just had a baby. My "baby" is 15! :blink:

Emilushka Contributor

I'm so sorry this happened to you! I can't relate to that particular circumstance, but can completely agree that Celiac can be so humiliating sometimes!

I've learned how to flush the toilet at just the right moment (courtesy flush!) so people can't hear that I'm MURDERING the bathroom. I've also learned to lift the seat and make sure I've not left "evidence" of my crime before I leave the bathroom!

UGH!!!

Oh my goodness ... me too! I always have to flush multiple times at home and I hate it. The landlords put in a really wussy toilet and it's so embarrassing. Even with the double-flush it's not always all gone.

I'm new to Celiac so I'm still trying to get rid of my symptoms ... but ugh. I hear you.

I've been so bloated too ... but with all the weight loss I had until my diagnosis, I don't think the bloating was too obvious.

MelindaLee Contributor

I had a very emotional night. I was so bloated from getting glutened by Wendy's chili (I'm sure they Cc'd it with crumbs or something), but I hadn't gone to my salsa class for a month so I went anyway. It's at a night club and we stay and dance after so everyone is very dressed up. Dress to impress and all.

I was talking to a male friend of mine and then this other guy walks up to me and whispers in my ear (thank God he whispered and didn't humiliate me in front of my friend) "My girlfriend wanted me to ask if you are pregnant. She's a month pregnant and she wanted to know if you are. You look pregnant so are you? Are you pregnant?"

I was FLOORED. I'm wearing tight jeans and a tight top so I feel totally exposed now. I told him that was mean and I kept telling him "Go away.You're being rude to me." Then he felt stupid and was like "It was my girlfriend not me. She made me ask you." I said "F-- you!" to him because he would not stop and wouldn't go away. Then my friend started to intervene. He had no clue what the guy was saying to me and thankfully did NOT ask. The music was loud so he couldn't hear anything. I think he assumed the guy was hitting on me or something.

The jerk finally walked away and it took every ounce of my strength not to start sobbing right there. I forced myself to do more dancing but I was so self conscious and sucking in my gut as hard as I could, so then it was hard to breathe so I had to stop doing that.

EVERYONE knows you do not ask that question of someone unless they look like they are going to pop. I'm not THAT bloated.

Horrible. I was having SO much fun too and it was very hard to concentrate on dancing after that. The next guy I danced with I kept messing up.

I'm so upset. I stayed another hour and then cried my eyes out on the way home. I HATE celiac!!!!!!!

Chances are these ignorant people would have asked the pope if he was a jew because of his hat. Don't let ignorant people bother you. You are better than that! :P

Marilyn R Community Regular

I can tolerate well meaning people making a comment about my physique, and I can tolerate ignorant people making a comment about my physique, but I've never had to endure what you endured, an ignorant jerk who couldn't take a really big hint and persisted. I probably would have left in a huff, so kudos to you for staying at the dance and having a good time. I hope that you can forget that jerk's major faux paux and remember with glee what a good time you had dancing.

It's easier to withstand the comments people make when we're in a better state of mind and health, but it really hits hard when you're sick from being glutened.

You were kind to make excuses for him about his girlfriend and her pregnancy. But I still don't think that's an excuse for being a totally offensive inappropriate jerk.

Way to go!

K8ling Enthusiast

I had a professor ask me today if I got glutened because I still have a bump from the baby (I am REALLY thin so I puff up almost immediately). I didn't know what to say, and before I could say anything he said "Oh! You're pregnant! I totally forgot!" I had to go in the bathroom to cry. I didn't even correct him.

Ugh.

TiffersAnn Apprentice

OH my goodness. That's horrible. I would have yelled back at him too. People should know better. I hope you go back next time, not being glutened, and knock 'em dead.


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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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