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I Feel Like People Are Irritated With Me...

Jenn624

By Jenn624
in Coping with Celiac Disease

Recommended Posts

Loey Rising Star
Loey
Posted

I may just be oversensitive, but I feel like people get annoyed by me needing to know ingredients and not going out to eat at certain places.

I have a bridal shower to go to and just messaged the bride to ask about the menu. I can feel her rolling her eyes.

I am overreacting. I know that. I already told my husband I am worried about Easter dinner at my in-laws. He insists it will be okay and I just have to tell them what I can eat. I know differently. She couldn't understand at New Year's why I couldn't have the corn casserole when it only had ONE TABLESPOON on flour. I tried to remind my husband how his mom cooks...it will be things with tons of ingredients and I will end up sick. He naively disagrees.

We are having a luncheon at the school where I teach and it's a covered dish. I looked at the menu and it's going to be slim pickings for me once again.

I never realized how much our world revolves around food...

Jenn

I don't think you're over reacting. This is a really tough diet to follow and even harder for outsiders to understand. Most restaurants and caterers will work with you on a simple menu. I had a restaurant bend over backwards o help me after a funeral.

I'm posting a few links on celiac that you might want to share with the bride and others. I hope that they help. Please feel free to PM me anytime if you need to vent.

Loey

Open Original Shared Link

https://www.celiac.com/gluten-free/

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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jenngolightly Contributor
jenngolightly
Posted

"OMG I know why you got sick - I used the mayo!"

We use the squeeze mayo. In fact, if anything comes in a squeeze bottle, that's what we buy. If you are budget conscience, you can buy your own squeeze bottles and transfer condiments into those. Even if I wasn't gluten-free, I'd buy squeeze bottles. It's nasty to see those little crumbs and unidentifiable specks of other food sitting in the margarine or mayo. Blech.

monika Newbie
monika
Posted

Try being in college where all of the on campus food easy grab stuff is things you can't have. I was walking past a group that had pizza hut personal pizzas and i was just about ready to die right then and there. I wanted it sooooo bad, but decided it was not worth it, which lead to me thinking i could make my own even better so :)

Yeah it stinks. My grandmother makes homemade bread (the gluteny kind). She was baking a loaf over the weekend and i just about lost it due to the oh so good smell. Again i told myself it wasn't worth it.

One day at a time :)

hahah I usually avoid going near the places with food on campus. It's horrible! the temptation is there but you can't. Oh well, like you said it's not worth it. I'm just glad im out of the dorms. I can finally make my food in my own kitchen!!!! :D

K8ling Enthusiast
K8ling
Posted

I bring all my own food, and tell them ahead of time. I tell them all about the disease and if it is a problem then I eat before I go. I have never had to skip an event because of food before.

I used to worry I was being inconvenient but if it was a peanut allergy people would bend over backwards. So now I just do it, no fuss, and they can deal with it.

taysic Rookie
taysic
Posted

Folks with gluten intolerance are EXTREMELY sensitive ... forget it if others don't get it.

color-me-confused Explorer
color-me-confused
Posted

I Thought of this post today when I was at work. I had over heard some women talking about me and my "Fad" diet and how I wanted to just feel special and make it all about me. I couldn't believe it! When it comes to food I have to make it about me. SOoooo frustrating!

Wow. My co-workers on learning about the celiac diagnosis generally say something like: "wow, that's rough. can you still drink beer?" really, I've fielded the beer question about 8 times. I work with scientists and engineers and anything novel tends to bring out the curiosity ;) It's a small company so I'd rather have most people I am routinely in contact with know than not know.

Lima Bean Newbie
Lima Bean
Posted

I have had surprising good responses.

"Why did you bring your own food? The food at this party is reallly good?"

I tell them I have Celiac and get:

" oh! That's gluten free, right? ". Then they tell me about someone they know who is gluten free.

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Loey Rising Star
Loey
Posted

I may just be oversensitive, but I feel like people get annoyed by me needing to know ingredients and not going out to eat at certain places.

I have a bridal shower to go to and just messaged the bride to ask about the menu. I can feel her rolling her eyes.

I am overreacting. I know that. I already told my husband I am worried about Easter dinner at my in-laws. He insists it will be okay and I just have to tell them what I can eat. I know differently. She couldn't understand at New Year's why I couldn't have the corn casserole when it only had ONE TABLESPOON on flour. I tried to remind my husband how his mom cooks...it will be things with tons of ingredients and I will end up sick. He naively disagrees.

We are having a luncheon at the school where I teach and it's a covered dish. I looked at the menu and it's going to be slim pickings for me once again.

I never realized how much our world revolves around food...

Jenn

I'm so sorry you are going through this. I'm posting some links below that explain celiac to those who don't suffer from it. I hope it helps your husband to understand your problem and how important it is to remain gluten-free. Feel free to PM me if you need to vent one-on-one.

Loey

Open Original Shared Link

https://www.celiac.com/gluten-free/

Open Original Shared Link

Open Original Shared Link

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • 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!
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