Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

The Most Annoying Thing About Celiac Is...

GFreeMO

By GFreeMO
in Coping with Celiac Disease

Recommended Posts

mushroom Proficient
mushroom
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 59
  • Created
  • Last Reply
Rebecca92 Apprentice
Rebecca92
Posted

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

Meatballman Rookie
Meatballman
Posted

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
Poppi
Posted

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
lovesaceliac
Posted

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
Meatballman
Posted

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
misslexi
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Googles Community Regular
Googles
Posted

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
mushroom
Posted

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

Laurentru Newbie
Laurentru
Posted

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

T.H. Community Regular
T.H.
Posted

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
Poppi
Posted

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
lynnelise
Posted

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
AVR1962
Posted

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
Celtic Queen
Posted

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
Strawberry-Jam
Posted

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
Poppi
Posted

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
Di2011
Posted

itching

Di2011 Enthusiast
Di2011
Posted

eating rice, again :lol:

ladymiss Rookie
ladymiss
Posted

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
GottaSki
Posted

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
Katrala
Posted

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
GlutenDude
Posted

The death of spontaneity when it comes to eating.

luvs2eat Collaborator
luvs2eat
Posted

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
mushroom
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,766
    • Most Online (within 30 mins)
      7,748
    LisaMarie39475
    Newest Member
    LisaMarie39475
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lizzie42
      Gluten free and oat free bars not sugary?

      By lizzie42 · Posted

      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Inflammation and Menier’s disease link?

      By knitty kitty · Posted

      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
    • MagsM
      Inflammation and Menier’s disease link?

      By MagsM · Posted

      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      Any bad experience with King Arthur Gluten-free bread flour

      By Scott Adams · Posted

      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Still unsure.....

      By Wheatwacked · Posted

      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
×
×
  • Create New...