• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Annoyed By People Who Think They Know More
0

10 posts in this topic

I am annoyed by people who think they know more than I do about MY celiac disease than I do. I work at a place (residential facility) where I have to eat with the youth I work with. The kitchen people tried to convince me that they could provide me with gluten free food seeing as we had a youth who is gluten free. Apparently he went from gluten light to gluten free while he was here. They kept insisting that they could provide me with food. So finally I was like, okay, if they aren't making this kid sick, they may be able to provide me with food I can eat. So I tried to eat their food two different times. I ended up glutened each time. I know it came from there as there is nothing I eat besides there that doesn't come from my own gluten free kitchen. Last week the head of the kitchen tried to get me to eat more of their gluten free food. However, I stated that I wasn't going to. He kept insisting that I should eat it, and finally I told him that I had gotten glutened from the previous food prepared and so was not going to be eating it.

He got all offended and said that it must have been something else that had made me sick because they prepare gluten free food. He obviously doesn't understand CC. And that isn't surprising. But getting glutened makes me sick in a way that nothing else does (the combination of the symptoms). It was so annoying given that he kept insisting that I could eat the food they prepared. That it must be something else that made me sick. Ugh.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


"There's clearly no gluten in it, how could you be glutened?" :rolleyes:

I know what you mean, unfortunately. I explain politely that there's no such thing as "clearly there's no gluten" and even if there isn't any gluten the food made me sick anyway so I'm not eating it again.

0

Share this post


Link to post
Share on other sites

It is hard for people who don't have celiac to understand ,& then there are the ones who are a teeny bit educated & they believe they have all the answers.....For me, I would try to educate him & make him fall from his high horse!!!!! but that's me... I would explain or take in educational materials that show that the level at which one becomes ill from CC is very different from another person's level of tolerance... Some are very sensitive at the beginning but after going strictly gluten-free they think because they are not ill in 20 minutes from eating or digesting a bit gluten they can cheat.... While others like me became soooo much more sensitive through the years that walking past Auntie Ann's pretzel makes me want to throw up & pass out ....and of course we have the ones who just cheat wehn they feel the urge...no one cleiac is exactly alike , we are unique..

I say stick to your guns & say "NO to eating CC gluten-free foods...it's your health .

0

Share this post


Link to post
Share on other sites

:blink::blink: The ones that drive me nuts are the ones who are not Celiac, not even Gluten Intolerant, but "they have read on the Internet...."

I have been gluten free for 5 years now but obviously reading something on the 'net overrules anything I might be saying.

Why is it all us older type females who take water aerobics think this is the time to share the most personal and private bits of information? Must be the lack of clothes that let's some devulge secrets I might only share with my doctor or husband. I told one lady I was having a rough morning and the reason for it... She loudly shared that information with the rest of the group and the instructor. For the rest of the class people kept saying, "are you ok" or "I'm sorry you are sick".

I think I am going to get a tatoo on my forehead that says. "No Aloe Vera will not cure my Colitis and no Acupuncture cannot cure my gluten intolerance"

Thanks for letting me rant. :blink:

1

Share this post


Link to post
Share on other sites

This has nothing, directly, about Celiac or gluten but... My FIL is a dentist. Somehow that makes him qualified in all aspects of medical care. I remember being pregnant and him giving me medical advice about the pregnancy (not related to my teeth).

When I was diagnosed with Celiac, he had nothing to say. We figure he was in the bar for that class at all the dental conventions.

0

Share this post


Link to post
Share on other sites
Ads by Google:


I also work as a therapist at a residential program - even though I don't need to eat with the youth, we have frequent parties where all the staff and kids are eating and its a bit frustrating when I keep having to remind everyone that I can't be eating the food as they are shoving it in my face. Even if something is inherently gluten free I stay away from it. Once I ate the cook's potato salad at one of our parties (I even checked over the ingredients with him) and I still got sick.

In their defense, I have worked there for three years and ate all of the food and was only diagnosed with Celiac in May, so many of them are still remembering that I used to stuff my face with the amazing macaroni and cheese the cook makes.

In my experience, I see more kids in residential programs who are on gluten-free or gluten-light diets due to autism spectrum disorders or to help with behavior. I haven't come across a kid yet that was gluten free because he was Celiac or intolerant. I think this gives the food staff a false sense of security that they are providing actual gluten free food by not adding gluten ingredients. At least in my programs, the kids aren't getting sick because they're on the diet by choice, not by necessity. There definitely is a huge misunderstanding or lack of knowledge of cross contamination and maybe you should offer to do a training with the staff on how to make sure items are truly gluten free (you can gear it towards making it better for the kids, but you'll benefit in the end). If egos still stand in the way it may be more difficult, that's when you brown bag it like I do and go on your merry way. As you know, its not worth it to get sick just to appease someone else. Good luck!

0

Share this post


Link to post
Share on other sites

Thanks everyone for letting me vent. I do take my own food. When I was there for the interview it ended up lasting four hours. They ended up taking me to lunch, but luckily they let me decide if I wanted to eat. As there would have been no comfortable way to explain why I couldn't eat their mass produced food. I know the kitchen staff went to the dietician with the kid. But knowing my experience and the experience of others on the board, that probably wasn't too informational unless they got really lucky. I think he has the idea that if the ingredients are gluten free, that is all that matters. I haven't done it yet, but i need to stock my office at work in case I get stuck there. I'm more interested in the winter when it snows, but really I could get stuck at any time (if there is no one to relieve me). Most of my coworkers are really cool about it, and my kids are cool too. They just like to ask me what I'm eating and what I eat when I can't eat wheat etc.

Side note: I brought a green bell pepper for lunch one day and now one of my kids is eating the green peppers they have for the salad bar as his vegetable. Usually they complain about having to eat their vegetables, but then very few teenage boys don't. :)

0

Share this post


Link to post
Share on other sites

I think I have another one here: "Eat without the fear of being happy!" ~> my mother

"Think positive and everything will be alright!"~> my father who is in fact a doctor. At least he stopped telling me this after I decided to try a new restaurant in the very next day and I was really hungry, stuffed my face and got ill.

Yeah, you go think positive.

And nice to hear (most) people understand, Googles. :lol:

0

Share this post


Link to post
Share on other sites

To Nor_Tx ("I think I am going to get a tatoo on my forehead that says. "No Aloe Vera will not cure my Colitis and no Acupuncture cannot cure my gluten intolerance")

LOL !!

0

Share this post


Link to post
Share on other sites

It is frustrating when friends insist that they can cook gluten free. Well, maybe they can cook gluten free but can they cook cross-contamination free??

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,421
    • Total Posts
      930,472
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Jennifer and welcome CyclingLady has given you some good advice above. You want certainty and that's entirely understandable. Go back to your doctors and explain that you need to know a little more and hopefully they will engage positively with you. If they don't, then do pursue a second opinion.  I just wanted to address your last paragraph quoted above. The problem with celiac, or in my case non celiac gluten sensitivity, is that it presents or doesn't present in so many different ways. It can do hidden damage which may take many years to become apparent. It can impact in ways which are incredibly difficult to recognise or isolate.  I am 'lucky' in that the way that gluten impacts on me is far worse than any mental or social isolation brought upon by the diet, so motivation is easy for me, even without the certainty of a celiac diagnosis, there really is no alternative, I don't think I'd last long on a gluten diet now. But I can well understand how difficult it may be to stay honest on the diet if you don't have any symptoms to deal with. The diet can be isolating, there does become a distance between you and 'normal' people. Who would want to deal with all that if they didn't have to? If you aren't satisfied with your doctors  responses and choose to go back onto gluten I suggest you find another doctor and go back into the diagnostic process and properly exclude celiac, including a scope. Otherwise you could be taking a big risk with yr long term health. You may find that this process supplies you with an answer as if your diagnosis was correct your response to the reintroduction of gluten may surprise you, or not of course! best of luck!     
    • There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body.  I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
    •   Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.    I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.    >.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.   PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
  • Upcoming Events