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

More Family Horror..


num1habsfan

Recommended Posts

num1habsfan Rising Star

So, today started off just fine. It was my cousins baptism, so we went to church, and eventually made our way to my uncle and aunties place near the lake for a get-together there. I took along my La Messagere beer, so that I wouldnt feel left out.

Everything was going great. Most of us kids went swimming, took our time getting back, etc.

Then it came to supper. My family, by now, all KNOWS about me having Celiac, since I've had it for 3 1/2 years already...

When I ate supper (hot dogs, and some potato salad) something just didnt taste good. I could TELL something was wrong. And then within a couple of hours, the pains started. We get home and mom said she heard my Auntie Lesley say the hotdogs werent Harvest (Harvest being the only brand of hotdogs I could eat).

And NOW OMG the brainfog, and the PAIN (as if my Crohn's-ish pains isnt enough!!)

GAH WHEN WILL THIS CRAP EVER STOP?!

~Lisa~


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

Oh, Lisa, that's terrible! I'm sorry you're sick. :(:(

Pauliina

Soo B Newbie

Sorry to hear that. Hope you start feeling better soon.

Guest nini

Lisa, I'm so sorry that your familly isn't taking you seriously... I'm fortunate that my family is at least trying to be careful and not get me or my daughter sick... at first my sister wasn't as careful, but after she had made several dishes and I questioned her on the ingredients AND THEN refused to eat what she made, she has decided to be way more careful... I don't understand when FAMILY members refuse to get it... friends and colleagues can almost be excused because they don't have to live with it, but family???!!! Family should be the ones who "have your back" IYKWIM...

{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}} and I hope the pain doesn't last too long for you.

angel-jd1 Community Regular
So, today started off just fine. It was my cousins baptism, so we went to church, and eventually made our way to my uncle and aunties place near the lake for a get-together there. I took along my La Messagere beer, so that I wouldnt feel left out.

Everything was going great. Most of us kids went swimming, took our time getting back, etc.

Then it came to supper. My family, by now, all KNOWS about me having Celiac, since I've had it for 3 1/2 years already...

When I ate supper (hot dogs, and some potato salad) something just didnt taste good. I could TELL something was wrong. And then within a couple of hours, the pains started. We get home and mom said she heard my Auntie Lesley say the hotdogs werent Harvest (Harvest being the only brand of hotdogs I could eat).

And NOW OMG the brainfog, and the PAIN (as if my Crohn's-ish pains isnt enough!!)

GAH WHEN WILL THIS CRAP EVER STOP?!

~Lisa~

You also can't put ALL of the responsability of YOUR diet onto your family. If it were me, I would have been asking what was in the food not just assuming it was safe and eating it. You can't force them to "get it" or ALWAYS remember the brands you can eat. YOU have to be responsible for your own health and check the food before you put it into your mouth.

I have read some of the posts you have made about your family on this board before, and they really don't sound like the kind of people that I would trust my health to! I don't think you should either.......sooo do ask them questions if they are making your food OR just bring your own food. That way you can stay healthy.

-Jessica :rolleyes:

lovegrov Collaborator

Overall my family is VERY cooperative and understanding, but I don't eat a thing until I've seen the labels and asked questions. Even though every hotdog I've seen in the U.S. has been gluten-free except Natahn's, I still check to make sure it isn't Nathan's.

richard

tarnalberry Community Regular

ditto what richard said. everyone I know is very understanding, but I never eat anything without checking on it first, even with people who KNOW my restrictions.


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



Celiac.com Sponsor (A8-M):



DingoGirl Enthusiast
ditto what richard said. everyone I know is very understanding, but I never eat anything without checking on it first, even with people who KNOW my restrictions.

yup, ditto to both....my own family is blessedly supportive, but I take my own food to barbecues so that they can feed everybody and make what they want without having to worry about me. Sometimes I'm able to eat what they're serving (ham and eggs at Easter, whatever), but not always, so I just always take my own. Really easy and safe that way for everybody.

taz sharratt Enthusiast
You also can't put ALL of the responsability of YOUR diet onto your family. If it were me, I would have been asking what was in the food not just assuming it was safe and eating it. You can't force them to "get it" or ALWAYS remember the brands you can eat. YOU have to be responsible for your own health and check the food before you put it into your mouth.

I have read some of the posts you have made about your family on this board before, and they really don't sound like the kind of people that I would trust my health to! I don't think you should either.......sooo do ask them questions if they are making your food OR just bring your own food. That way you can stay healthy.

-Jessica :rolleyes:

most of the time i find it difficult enough to know what is and isnt safe, how can i expect my family who are not gluten-free to know, but saying that, it would be nice if they wuld show a little appreciation for what im going through and ask " is this ok for you to eat ? "

VegasCeliacBuckeye Collaborator

There is no one that I trust more than myself when it comes to eating safely. Other people are simply not as vigilant.

My family makes an effort, but they don't understand "hidden gluten" and they are confused about starches, corn starches, hydrolyzed proteins, etc...

Bottom line = unless I marry another Celiac, I will never completely trust anyone (besides the occasional chef in a restaurant)

Nantzie Collaborator

Yea, with your family, I wouldn't trust them further than I could throw a gluten-free donut. :lol:

Plus with all the touching of food that's done when a non-gluten-free person is preparing food for a big get-together... Nobody thinks to wash their hands before handling gluten-free food so you won't get cross contaminated.

I always bring my own food just in case.

My family can be a little odd about my gluten-free eating. But what I do (sneaky, sneaky) is to really admire and compliment the gluteny food they've prepared. My FIL started getting into baking after I went gluten-free. He makes the most beautiful breads and they always smell so good, I could just cry. But I just tell him how nice they look, and how good they smell, and tell him how much I hear everyone talking about how much they look forward to his bread. I used to bake too, so I'll ask him about techniques, etc. Now, after a few months of me doing this here and there, he actually smiles at me sometimes, which is a very rare event. :rolleyes:

The sneaky thing I'm trying to accomplish here is to be really nice to him. That way, if he decides to be a jerk to me about being gluten-free (which was happening at first), then he looks AND feels like a total &%# for doing it because I was so nice to him. And the rest of the family sees him being a jerk after I was so nice and interested in what he was doing, and then they get protective of me. Even though they're usually following his lead and rolling their eyes at my reading labels.

I started doing this with/to my FIL because he tends to be the ringleader of whatever sarcasm is going on.

The key is not to make it seem like a big thing or that you're doing it for an audience. Even if you just tell one of your more grating family members, when it's just you and her, how gorgeous her famous brownies look and how much you always enjoyed them, she's going to be a little nicer to you that day. If she gets nasty (as I know your family can...) and tells you well I thought you couldn't eat them anymore, just tell her well you can smell them, and you're enjoying them just as much.

You'd be surprised how being nice to nasty people helps. Maybe not immediately, but it builds up. Start giving it a shot.

Nancy

jerseyangel Proficient

I don't trust anyone to prepare food for me! I will be going back to my hometown in 2 weeks for a long weekend. I have already told everyone that I will be bringing all my own food. If there is something there, and I see it being prepared, or I prepare it--I'll eat it. Otherwise, I'll be just fine with the stuff I bring.

Lisa, I sort of get the feeling you were under the impression that the hot dogs were a brand you could eat? Because your Aunt said they were *not* Harvest, that tells me she knew what you could eat, and chose not to serve them. From now on. I would either eat beforehand and bring a snack, or just bring my own food. Even people who mean well can make a mistake, but to do so on purpose, is pretty low--especially for a family member.

cgilsing Enthusiast

My immediate family is really supportive (eating with extended family is a bit more difficult), but even so I agree that I don't trust anyone as much as myself! My husband and my mom are both fantastic gluten spotters, but there are still times that they wouldn't think something had gluten and it does. My mom can't ever remember that rice crispies and corn flakes both have gluten! :rolleyes::lol: That's ok though! She goes out of her way all the time to make sure I can eat! I just have to remind her! :P

schuyler Apprentice

I hope that you feel better soon!

penguin Community Regular

Sorry you got sick, that sucks!

I'm with the others, unless I make it or see someone else make it...actually, no, unless I make it, I don't trust it. I trust DH to cook for me, but since all he can cook is steak and baked potatoes, no worries! :P

My suggestion is to become an excellent cook and wow everyone. That way, you know it's safe! :)

lovegrov Collaborator
most of the time i find it difficult enough to know what is and isnt safe, how can i expect my family who are not gluten-free to know, but saying that, it would be nice if they wuld show a little appreciation for what im going through and ask " is this ok for you to eat ? "

My family either calls and asks me questions about foods and ingredients or saves the package with the ingredients. I also quiz them about how they made something and what went into it. I don't expect them to know all the details of being gluten-free (although some do know a fair amount) and I don't expect everything we eat to be gluten-free, but I expect and do get some consideration. I'm always flabbergasted when I hear about family members who have no concern for relatives with celiac.

richard

debmidge Rising Star

Lisa

Sorry your family plays games with you (let you believe what they make is gluten-free when it is not). You can't buy a new family. I understand that sometimes it's difficult to take foodstuffs along with you especially when you have to be in a church and depend on others to drive you places, etc. They'd probably make fun of you when you carry a "cooler" around. Sounds like the next step though, despite the criticism you're going to take....

How close to graduation are you? Or do you have one more year in college left?

D.

dwaters800 Rookie

My son and I both have gluten sensitivity, but his seems to be more severe than mine. Following the diet is very complicated and I certainly don't expect my family to try to cook correctly for us. I just call ahead, find out the menu, and bring things that my son and I can eat when I feel unsure about what is being served. Sometime we just snack before we leave to ensure we won't be hungry if we are going to an affair that it would not be appropriate to bring food to. On my side of the family we have people with the following allergies: onions, mushrooms, red meat, black pepper, and throw in a vegetarian and two Adkins devotees. No one person could cook everything for this crowd. Good luck and hope you are felling better.

Ginny

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. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
×
×
  • 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.