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The Most Annoying Thing About Celiac Is...


GFreeMO

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mushroom Proficient

Well, obviously if eating gluten free is not the entire solution and it does not appear to be other intolerances, then further investigation is required, which would probably include scoping. But the scoping can be done independent of celiac testing.

I agree with your order of investigation: blood test first - if negative, gluten free; if still problems, further investigation possibly including scope. And quit talking about "allergies" when you are referring to celiac :blink::P


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  • Replies 59
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Rebecca92 Apprentice

The delicious smell of all your old favorite gluteny foods and knowing you cant have them

Meatballman Rookie

Watching friends and family enjoy foods that I used to.Having friends and family appologize to me while enjoying the foods i used to.

Poppi Enthusiast

Being scared to travel.

My husband and I have dreamed for many years of travelling extensively in Asia. Our oldest kids will be leaving home soon and we had hoped to start travelling with (or without) the two youngest in the next few years. I've realized that eating in Asia will be so difficult. No street food, huge language barrier, ingredients in CJK characters... and so on and so forth.

We hope to take cruises and travel in Europe instead so I can run a better chance of not getting sick but it's hard to let that lifelong dream go.

lovesaceliac Newbie

Please give some advice Meatballman to me, the gluten-eating wife of a super-sensitive celiac...I find myself on occasion apologizing to him when I eat gluten in front of him. I can't help it! I know he wishes he could share...what's more annoying - me turning down his suggestion that I have that cinnamon roll (becuase he feels guilty if I don't eat what I can) or me eating it in front of him (then I feel guitly while I do.)

Meatballman Rookie

Please give some advice Meatballman to me, the gluten-eating wife of a super-sensitive celiac...I find myself on occasion apologizing to him when I eat gluten in front of him. I can't help it! I know he wishes he could share...what's more annoying - me turning down his suggestion that I have that cinnamon roll (becuase he feels guilty if I don't eat what I can) or me eating it in front of him (then I feel guitly while I do.)

I guess for me.I wish it could just be like it used to be.I didnt know I had this until I was 41.I was a big guy with a huge appetite.Now I feel weak and like everyone is always trying to please me.Sounds silly but I wish everyone including my gluten eating wife and daughters would just eat stop saying they are sorry.I cant speak for your husband.If he is like me Im sure he knows you are sorry and support him.I think he would want you to enjoy that cinnamon roll.To answer your question the annoying part are the apologies.Just act like you always have and eat what you must.I think drawing attention to it all the time frustrates me.Possibly he may feel the same.Anyway Im rambling now.Hope I helped.

misslexi Apprentice

That sometimes you have to lie and say you have a wheat allergy just to get people to take you seriously.

People calling gluten free diets/gluten free products in grocery stores just a "fad".

When the person closest to you in the whole entire world doesn't take you seriously and says you'll grow out of it. Despite already being an adult.

How so many products on the shelves out there are full of weird stuff. Sometimes you just want a brownie to taste like a brownie, not a fig newton.

When people buy you gluten free stuff without being asked. And then expect you to give them money for it.

Maybe this isn't an annoying thing exactly, but coming to the realization that the majority of the people in the food services industry know so little about the food they are serving you it should make everyone run screaming for the hills.

And I could go on lol. I can't pick a most annoying thing.


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Googles Community Regular

I hope it's okay that I add another one.

Other people's pity when they are eating and you can't, and the look they give you.

mushroom Proficient

When someone thinks that just because it is gluten free you can eat it :ph34r:

Laurentru Newbie

Losing my chance to be a humanitarian aid worker in third world countries.

T.H. Community Regular

I ate boring food while everyone around me was able to enjoy a better meal, and I STILL got sick.

My child has to fight tooth and nail to keep her food safe, because the in-laws can't seem to understand cc and simply brush the gluten crumbs away from her food, insisting it'll be 'fine.' (...and they wonder why I won't let them babysit anymore :rolleyes: )

My kids are in pain and it's because I made the wrong decision about the safety of the food I allowed them to eat. :(

Poppi Enthusiast

I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

lynnelise Apprentice

Constant planning.

Not wanting to cook but being bored to death of the 3 places I can safely eat.

How my in-laws put ritz crackers in EVERYTHING and then act like they "forgot" I couldn't eat this or that.

AVR1962 Collaborator

Having to always ask questions, read labels and being so careful. I miss being able to eat anything I wanted without thinking about it!!

Celtic Queen Explorer

Paying twice as much for a box of gluten free bisquick that's 2/3 the size of a regular box.

Worrying about what I'm going to eat at social event or if I can eat anything at all.

Having to become a high-maintenance person when I go out to eat. I'm not that way at all. It's hard having to be particular about things.

Strawberry-Jam Enthusiast

I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

I hate going to the store and finding delicious-looking gluten-free things that either contain soya, contain dairy, or are CC'd with soya/dairy. :(

Poppi Enthusiast

I hate going to the store and finding delicious-looking gluten-free things that either contain soya, contain dairy, or are CC'd with soya/dairy. :(

Fair enough. When I'm looking at the everything-free cookies that cost $7 for a box of 6 I try to remind myself that there are people who are extremely thankful that these cookies exist for their kids (or themselves).

It's a petty pet peeve especially since I am able to make pretty much everything from scratch anyway. I should just be thankful I can have soy and dairy.

Di2011 Enthusiast

itching

Di2011 Enthusiast

eating rice, again :lol:

ladymiss Rookie

thinking and over thinking.

thinking.....

-can i eat it?

-what can i eat? here? now? at that store? at that restaurant? at his/her house? at the party? at the event? on vacation? on the road? in the car? as a snack?

-planning ahead....hmmmm what/how/when will i be able to eat?

-if i eat it, will i... be sick? from what? and for how long? will i have an allergic reaction? is my allergic reaction 'real' or psychosomatic? is the anxiety a reaction to the food i've just consumed or to the state of mind i've put myself thinking about eating the food i've just consumed....

-what will they think? im a hypochondriac? a health nut? a nut job? telling the truth?

-how do i tell them i can't/won't/don't want to eat the food they've prepared?

-how will i find a compromise in this scenario...(fill in the blank)....and not draw too much attention to myself, feel comfortable, help others to feel comfortable, not be rude AND find something to eat!!! :rolleyes:

too much thinking.....

GottaSki Mentor

Hands down...watching my teen-aged sons struggle with the "oh goodness that pizza looks and smells great" while hanging with friends. I got so sick that I'm grateful for health and being in control of my food....yet for my kids the symptoms are bad but not incapacitating...very tough to stick to it in social situations.

Katrala Contributor

I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

I'm with you.

I know there are people who appreciate these things, but it annoys me to have dietary needs lumped in with dietary choices.

I don't have a problem with anyone who wants to eat Vegan, Organic, etc. - that is their personal choice - but I don't want to be grouped in the same category.

GlutenDude Newbie

The death of spontaneity when it comes to eating.

luvs2eat Collaborator

That you cannot eat gluten...c'mon...this was obvious. :)

I'm w/ you Chad. It's a no brainer.

How simple my life was before celiac and there are some foods and activities I miss so terribly...

My mom's thanksgiving stuffing

My love of baking

Eating out w/o difficulty

etc, etc, etc.

mushroom Proficient

Always having to be the food preparer, even when you are "going out" to eat.

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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!
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