Jump to content
  • 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

I Really Am Trying


UR Groovy

Recommended Posts

UR Groovy Explorer

7 months in: Venting on my first family frustration. My sister saw the People article. Of course, now, she thinks she's a celiac expert & wants me to take a 4 day trip up the coast with her because she thinks I can eat any grilled protein or veggies from a restaurant. I don't even know if I'm "Celiac" or just gluten intolerant. Does it matter? Of course, she doesn't understand cross-contamination. And, then, the dairy. This one, she really can't get a grip on because I don't get nearly as sick with it. She's really trying to understand, and everyone else is too, but... She doesn't get how sick I got last time. She doesn't get that I'm not ready to eat at restaurants yet. This is still new to me. I'm not excited about eating brocolli and carrots with rice at a restaurant. This is not fun for me. I don't care what some article in People, or what Elizabeth Hasselceliac says, or her interpretation of it. I don't know what to do. I just can't imagine my life being this way. I'm trying so hard to adjust. You know - I just want to blend - like everyone else. Now that my depression's gone, I had half a chance to do that. I guess that's just wishful thinking ! My crosses to bear? I'm sick of carrying crosses.

Until now, the social thing has been easy - my house, my happy hour, my way. Summer's here now, so that's over. We have 3 B-day BBQ's scheduled in June. Drag.

I can't believe that we have to go through this. It's insane. So, what do I do? I'm trying to just be matter of fact about it and tell people that I'm just not willing to take the chance yet, but it's hard to do that when people don't get understand what taking a chance is. I'm already sick of it & it's only June. I try to be firm, but not rude. Same old problem, just a different member. Shoot me now !


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



Celiac.com Sponsor (A8-M):



UR Groovy Explorer

You know what? This is rediculous. I'm a big girl, & I'll make my own choices. I don't need to justify it to anyone. I'm simply not willing to risk it yet & they're going to have to accept it. I can't afford to care right now if it's okay with them. It's my turn to be happy ! Thank You.

jerseyangel Proficient
You know what? This is rediculous. I'm a big girl, & I'll make my own choices. I don't need to justify it to anyone. I'm simply not willing to risk it yet & they're going to have to accept it. I can't afford to care right now if it's okay with them. It's my turn to be happy ! Thank You.

That's the spirit!

My thoughts exactly--no one really know how bad it is unless they've lived it. They also don't have to put up with being sick afterwards.

I thought the world would come to an end when I, a former people-pleaser, began to really, truly not care what others said--and ya know what--it didn't! ;)

UR Groovy Explorer
I thought the world would come to an end when I, a former people-pleaser, began to really, truly not care what others said--and ya know what--it didn't! ;)

Right, I'm getting to the point where I really don't care what others say or think about it or anything else. I've always tried to justify everything for fear of being misunderstood or disapproved of. Lately, I don't think I should have to justify anything in my life. It is what it is. If someone doesn't approve or validate my decisions, it's just going to have to be that way. The choices will be: accept it or accept it. It's my life, right? It may seem selfish, but I think I have to stand up for myself for once.

tom Contributor

You go girl!!

I've found it works well to say, w/ an almost laughing smile, "oh no I can't eat that. Wish I could".

Hard to do while feeling crappy tho.

I always eat before going to anything w/ food.

sparkles Contributor

My suggestion is to take your own food.... and just not say anything. If you are asked, just say it is easier to keep to this diet I have to be on... Food Allergies, you know... and then change the subject. It is not fun to have to keep explaining... and explaining.... and explaining. I find that eating before and then sitting there smelling the good food really is hard for me so I try to take what everyone else will be eating and just keep my food to myself. You might let the host in on your dilema and when they insist that their food or at least some of it is gluten-free, just say great and bring your own food anyway. I don't share my food... cross contamination... and all that. Good luck.... just don't let this diet and the explanations get you down. It seems that someone somewhere will be an expert on something that they know nothing about!!!

NoGluGirl Contributor

Dear fajitas,

My family does not get the seriousness of my Celiac either. :angry: I get violently ill from a microscopic amount of it. I break out in a sweat, get extremely nauseated, have the sudden urge for a bowel movement, start shaking, sometimes my hands go numb, and if I do not get my medication down quick enough, I will get dry heaves that make my insides feel like they are emploding! Everyone else can take it with a grain of salt. They are not the ones who have to live with the consequences of carelessness.

I have turned into the gluten-free police! My mother still thinks it is not going to destroy my intestines, and that my doctor did not diagnose me as Celiac. :rolleyes: It is incredibly irritating. This is a woman who complains of stomach issues every single day, but refuses to believe the disease is genetic. Guess what she eats when she gets up everyday? She either has toast or some crackers. I told her, if you want to ruin your intestines, fine, but you are NOT going to ruin mine!

Dear Patti,

I used to be a people pleaser as well. Since I have been ill, I finally had an epiphany. That was that I did not have to let the world crap on me! I always let everyone step on me before. No more of that!

Sincerely,

NoGluGirl


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

As has already been said--you go girl!!! We have to learn that we can't always be sweet because people will not understand. Sometimes we have to be insistant, they have got to understand that none means none. I will not eat out either.

I attended our celiac support meeting Tuesday night and food vendor was there with some of her new products. She isn't gluten free, but could see the need for gluten free foods and is running with that need. She told us that she has catered to many groups and she finds celiacs to be the nicest people. To which our leader says, "It's a prerequisite of being celiac, only nice people allowed!" :lol:

happygirl Collaborator

Deb---you are right. Celiacs really are a bunch of nice people!

I second what others have said. Bring your own food, if someone asks, say you have some food issues, and that you would much rather enjoy the company of everyone than risk taking a chance. Then change the subject. I think most people respect me for it when they see that I've taken control of the situation, so that I can continue to lead a normal life.

(the same approach extends beyond bbq's...weddings, rehearsal dinners, family get togethers, business meetings, office lunches, dinner with friends.... my lunch box goes EVERYWHERE)

UR Groovy Explorer
...

I second what others have said. Bring your own food, if someone asks, say you have some food issues, and that you would much rather enjoy the company of everyone than risk taking a chance. Then change the subject. I think most people respect me for it when they see that I've taken control of the situation, so that I can continue to lead a normal life.

...

I like the way you put that because it's true. I really enjoy getting together with the family. I also have come to realize (now that I'm more 'in control' ) that people do show more respect. And, I don't want to explain it anymore. Make the company of them more important than the issue - that should work.

I've been better about prepping food and bringing my own. For a few weeks, I was going up for 2 day trips to help out where needed - brought my icechest. That worked out okay, but then there was a kitchen.

For the trip she wanted me to go on, I'd be staying in a hotel room with three 15 year old boys and her - no kitchen. Can you imagine if I got glutened? Flash back a few weeks: I was there & had three glasses of wine - made a bad decision & ate her friend's chicken enchiladas. That night, while sleeping at her house while her husband & three boys were all within ear-shot, I threw up 7 times - and other unpleasant, bad smelling things. :o

I'm going to take control of the situation.

Anyway, thanks all you guys out there for being out there.

kbtoyssni Contributor

I love your second post! I don't think it matters if you have celiac or "just" gluten intolerance. Either way gluten makes you sick and you have to avoid it. You are completely right that you don't have to justify anything you do to anyone but yourself. Don't ever let someone guilt you into going to a restaurant to trying "just a little bit" if you aren't 100% comfortable with it's glutenfreeness.

MommaMoody Newbie
As has already been said--you go girl!!! We have to learn that we can't always be sweet because people will not understand. Sometimes we have to be insistant, they have got to understand that none means none. I will not eat out either.

I attended our celiac support meeting Tuesday night and food vendor was there with some of her new products. She isn't gluten free, but could see the need for gluten free foods and is running with that need. She told us that she has catered to many groups and she finds celiacs to be the nicest people. To which our leader says, "It's a prerequisite of being celiac, only nice people allowed!" :lol:

Deb,

I am new to this message board and to the diet. I too live on Long Island. Can you please give me more information about the support group you mentioned.

Thanks, Liz

NoGluGirl Contributor
Deb,

I am new to this message board and to the diet. I too live on Long Island. Can you please give me more information about the support group you mentioned.

Thanks, Liz

Dear MommaMoody,

I have a present for you! Welcome to the forum! I have a list that should really help. This is overwhelming. I went through this with myself eight months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Second chance

    3. - cristiana replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    4. - Wheatwacked replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,562
    • Most Online (within 30 mins)
      7,748

    Hannah Kelch
    Newest Member
    Hannah Kelch
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/   Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences   Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.   Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/   Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/  
    • Mari
      Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  
    • cristiana
      Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues. Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless. Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect. The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten. Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet. I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.
    • trents
    • Wheatwacked
      Anyway, I have no problem with grass fed milk other than the price.  Maybe I should move to Ireland or New Zealand.  They're the only countries that don't feed grains to their cows to increase milkfat and milk volume. A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week.  A year ago I had over 90% stenosis in the right artery and 80% in the left.  Tcar procedure done in the right with a stent.  The results today were right side downgraded to Moderate stenosis and the surgeon did not expect to see as much improvement on the left. (untouched). I must be doing something right.  Recheck in six months.   Mucosal reactivity to cow's milk protein in coeliac disease This paper proves that cassein is the protein in cow's milk is the trigger but the study did not differentiate as grass fed milk.  I haven't found any studies specific to grassmilk. The study does not differentiate alpha or beta cassein.  Google says: some clinicians speculate that grain-based proteins could potentially pass into the milk, though scientific studies typically find no detectable gluten or gliadin fragments in bovine milk regardless of the cow's diet. So given alpha cassein as the trigger, grass fed A2 cassein; thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy; plus the omega 6:3 ratio of grain fed milk is 5.8:1 vs grass fed ratio of 1:1, grass fed milk is less inflammatory.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.