• 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.

People Not Taking You Seriously
0

53 posts in this topic

How do you deal with family members and friends who don't take you seriously?

I discovered I have celiac disease and went gluten free 6 months ago. The problem is I've been living abroad for several years so my family has not witnessed my symptoms. All these years I hid from them that I suffered from fibromyalgia and chronic fatigue as well as constant GI symptoms and mental health issues, etc...

And so I'm visiting them this summer and they seem to think going gluten free has only been a diet choice, nothing dangerous. I tried telling them about the symptoms I was getting. Also, my mother has suffered the same symptoms all her life and suffers from cerebellar ataxia and has had difficulty walking for a few years as a result of gluten. I tried explaining this to them and that if I carried on eating gluten, I'd end up like this too. But it's like their face goes blank and they stop listening at this point.

So I feel like I constantly have to defend myself. They especially don't understand why I'm being careful with cross contamination and get annoyed each time I say I can't eat something.

For example, I was making gluten free pasta at my aunt's house the other day and she wanted me to use her colander. I said I'd rather not as they use it for wheat pasta all the time. But she was arguing that it's fine and that it's washed very well. I still said no, but she wouldn't let go.

Or another example of annoying conversations we have is:

Aunt: "can you eat doughnuts?"

Me: "No, unless they are gluten free"

Aunt: "I have some doughnuts in the fridge, can you eat those?"

Me: "Most likely not as doughnuts are generally made from wheat flour unless you took them in the gluten free section, but no one buys baked goods in the gluten free section unless they're looking for gluten free specifically"

Aunt: "You never know, maybe I grabbed gluten free doughnuts without realising, let's have a look"

- So Aunt gets up, walks to the fridge and brings me the doughnuts -

Me: "No seriously, they will be made of wheat. You don't go to gluten free bakeries or shop in the gluten free section unless you are gluten free. It's not something you just stumble on accidently. There are not enough gluten free products on the market for that to happen, unfortunately."

Aunt: "You don't know that. You don't know until you read the ingredients."

- Aunt hands me the doughnuts -

Aunt: "Go on, check the ingredients"

Me: "Fine"

Me: "First ingredient - wheat flour"

Aunt: "ah"

Aunt: "But I have biscuits too, can you eat those?"

Me: "No, biscuits are made of gluten too"

Aunt: "But maybe these are made with gluten free flour"

Me: "No, as I said, baked goods on the market are very rarely gluten free"

Aunt: "Why don't you just look at the ingredients before dismissing them?"

Me: "Because I know they contain gluten! These things are made with wheat flour!"

- Aunt gets up and gets the biscuits and makes me read the ingredients -

Me: "Made with WHEAT FLOUR"

Aunt: "Ah, well what about these other biscuits?"

Me: "As I said, baked goods are generally a no..."

*Sighs*

And so on.... And it gets tiring for me... and them...

And the problem is, they raise the gluten issue in every conversation. And when I respond they always seem tired and bored of me talking about gluten. Well then why don't they just let me eat what I want and stop questing and interfering. :rolleyes:

Is anyone in the same situation? How do you deal with that? :rolleyes:

(rant over)

2

Share this post


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


It gets frustrating. It is why sometimes the best family is people you aren't related to. It takes a long time to adjust to being gluten-free. I started last fall after symptoms kicked in following the flu. It has taken me some time to adjust and for gluten-free to be automatic. Yes, I sometimes have issues with friends. I took almost all my own food while camping with friends last week. With any of their gluten-free food I made sure I was "first in line." Even with that my "brother" asked if I wanted a second helping of the (gluten-free) BBQ, and I said, "no, there is always the risk of cc." He said there was no cc, and we went back and forth until I said someone was eating the non-gluten-free potato chip crumbs and they could have... There are so many sitcoms. seems like Celiac would be a good one. It is important to be anal retentive when it comes to gluten. Even 6 months later my friends ask if coconuts are gluten-free, etc. But they are learning, and more importantly, they sometimes make gluten-free allowances just for me. A friend made me a gluten-free birthday cake last night and kept all the ingredients for me to look at first. With all the frustrations, I find it best to step back and remember all of the things to be grateful for, the friends that invite me to gatherings and accept that I will bring my own food, the acceptance of my limitations, and that chocolate is gluten-free. Your family has lack of knowledge about gluten intolerance and where the nasty molecule lurks, but they also may be in denial and this can take a long time to dissipate. Could there also be a bit of "yanking your chain" to get a reaction from you?

1

Share this post


Link to post
Share on other sites

I don't have much help as far as dealing with family. We all have allergies and are used to reading labels and whatnot.

The thing that struck me about your story is that your mother needs celiac tests. You know celiac can cause cerebellar ataxia, right? If it's at all possible you need to drag your mother to the doctor and get her tested for anti-gliadin IgA. She may not come up positive on the other tests because they're for gut damage.

Good luck staying healthy during your visit and I'm sorry you're having to go through this.

2

Share this post


Link to post
Share on other sites

yes! you need to drag your mother to get tested.... im "THIS CLOSE" to dragging my dad in ..

i COMPLETELy understand- in addition to family- its everybody else too.... looking at u like you're looney- oh i totally am there with ya

2

Share this post


Link to post
Share on other sites

Good point regarding the ataxia. If your mother hasn't been tested for Celiac then it is important to do so. There are a great many symptoms that can be associated with gluten intolerance, and finding a doctor familiar with Celiac (not an easy task) can help to sort all of these out. I have a niece with lots of GI problems that is gluten-free, but she won't have the Celiac tests because of the real fear that she won't be able to get insurance for a preexisting condition if it comes out positive :rolleyes: . I have a sister with lots of GI issues as well, but her's aren't severe or obvious, and she won't go gluten-free or get tested. I sent her a lot of gluten-free pastas for her birthday and she said she would save them for when I or her daughter visit. Family. Celiac just offers one more layer of frustration.

1

Share this post


Link to post
Share on other sites
Ads by Google:


That is soooo annoying. I've started saying something like...I will never be able to eat anything that you cook for me, ever. I will take care of my food, so please don't offer me any. I do not like to call attention to myself so please don't ask me about it.

I've had food issues my entire life. There are always going to be people who don't believe you and that's unfortunate. I've had very close friends accuse me of "making up my food allergies to get attention." Really? Yeah, everybody wants this kind of attention, right? I'm no longer friends with those people.

I've been allergic to citrus since I was a child. My sister sent me a box of grapefruit for Christmas a few years ago. I mean, what the hell? I had to get my neighbor to get the box off of my porch. I've discovered that some people will never get it because they really don't want to. Stay strong and just SAY NO!! *even if they don't want to hear it :)

1

Share this post


Link to post
Share on other sites

I found it was educating to go with my Mom through Wikipedia articles together (both for ADD or celiac or whatever..) And translate stuff or show her pictures of vilii and explain briefly.. so she understands the mechanisms and the symptoms..

I was gluten-free before and it kinda drove them crazy (even if I cooked my own food, just leaving the extra dishes around was 'soo annoying' ugh)

Celiac has been in the papers in the last few years too, and some acquainatnces have been officially diagnosed, so that helps too..

If there were no articles in your country, consider translating some stuff, especially signs/consequences etc. Some really good tips on this forum too :)

Also, remember old people can have trouble remembering stuff.. They just want you to have a good time.. Sometimes they can't eat cookies due to health reasons and want you to 'enjoy' for them!! (They may also equate cookies=love! :))

Educating, inspiration, or just changing the topic can help?

I've sometimes said that I have a 'pre-diabetic' condition too, my blood sugar can go haywire after sweets and I try to stay away.. They know about diabetes (though some of the diabetic relatives still eat and bake cookies and such!!) at least it helps them relate more easily...

1

Share this post


Link to post
Share on other sites

It is extremely frustrating. I don't have it nearly as bad as you (OP)...but yet even the occasional callous comment like "Well I'd assume someone on your diet would know what you could or could not eat" (at a fair)...when of course it's like...not unless I see the ingredients of EVERY food, and even THEN there could be contamination, hidden gluten, etc ad infinitum. It's not like I'm doing it to be paranoid or finicky. I'm doing it because every thing I eat has a potential bomb lodged inside it that will go off in my instestines if ingested. So, heck yeah I'm careful and always air on the side of caution. I'm sure there ARE things I could eat that are gluten free, but unless I KNOW, or it is labelled gluten-free, or I have checked the brand, or it's just a plain carrot...etc...I'm not gonna eat it. sorry. but people do seem to get annoyed occasionally, like the fact I'm not eating gluten is an inconvenience to THEM so how...even when it does not affect what they eat at all. It's like...why does it matter, then? Just let me be lol. I'm not complaining and don't stand around whining about what I can't eat to everyone all the time...so just leave me alone and believe me when I say I don't want to eat something because it might make me sick.

So kudos to you for having way more patience than I would with your aunt.

0

Share this post


Link to post
Share on other sites

Since you posted this a few months ago, I'm just curious, did it get any better? That's a very strange conversation with your aunt. My thoughts were either she is illiterate and unable to read the ingredients herself or she is just trying to annoy you. Some people that think this disease is fake will go to great lengths to tempt you to eat gluten. Then again I have heard of people thinking white bread is made of rice so I would not be completely surprised if she is just that ignorant of what is in her food. If they are not being annoying on purpose I would try to educate them. It sounds like your mom needs testing. I hope you can convince her someday to get it before she is completely diasbaled by the gluten ataxia.

0

Share this post


Link to post
Share on other sites

I think sometimes that if a reaction to gluten was similar to peanuts and the need for epi-pens (I know it's NOT an allergy but an autoimmune response) people would take it more seriously. When I read the conversation with the aunt I immediately thought of my dad who at 85 is always offering me food (often gluten laden), I think it stems more from lack of knowledge and understanding about how many products have gluten--think how hard it is for us just navigating the grocery store. Food is equivalent to love for many people and I would bet for your aunt it may be the same. I find in these situations, it's easier to say thank you but I'm so full from lunch, breakfast, etc and remember she loves you. We have to find a way to live safely in the food world around us, if we are lucky enough to have family members who are knowledgeable and willing to accommodate that is wonderful, but I don't think we should ever assume that family and friends are out to trip us up.

0

Share this post


Link to post
Share on other sites

I have also had that sort of conversation....I remember my dad getting into it with me and saying something like "the label says MAY contain gluten, not that the product DOES contain gluten" and he was suggesting that I should give it a go! lol. I finally said, "Dad, I'll pass. I'm happy with my lettuce wraps right now"

In the end I appreciate that he just doesn't get it. I mean, there is some sort of huge block for him. He is a smart guy, but this 'gluten free thing' just doesn't jive with him for whatever reason. No big deal. I simply REFUSE to engage in any conversation with him on it. If I am at his house, I bring my own food, cutlery, dishware, microwavable container, etc and if he asks "would you like this or that...do you think it contains gluten" i don't even bother trying to educate him. I just say "no thanks, Dad. I'm good"

At the end of the day, he is not going to ever appreciate the nature of celiac disease and that is okay. I know he loves me and now that I've given up trying to educate him, there's no more of those idiotic stress-filled conversations. phew.

KDawg

0

Share this post


Link to post
Share on other sites

Hahahaha! Replace "Aunt" with "Mom" and you just glimpsed my life. <_<

Thank you, my husband and I laughed out loud reading that. Very "Whos on First." :P

I am currently dealing with this as well. And I'm pissed because I've averaged 8 hours a day worth of in depth research into Gluten for the past 6 months. I think at this point I know a little something about the issue. :rolleyes: So when people act like idiots it is very hard not to take it as disrespectful of my intelligence...as if I don't know what I'm doing.

:blink:

I have no advice as I keep on trying to educate whenever possible and completely against the odds (But this is too important not to!).

Anyway, know that you made two people smile today and you do have support here on the forum. :P

1

Share this post


Link to post
Share on other sites

my Dad is sort of like your aunt. "So, you can't eat that then Sis". "No Dad". "well let's look at this." I can't get upset cause he really cares but at 82 he just doesn't get it. When we visit I take my cooler, scrub a spot in his refrig, take my own pan and cutting board, a sense of humor and love and... pray! He means well and cares and he always takes me out to eat at Outback cause he knows I can eat there!

0

Share this post


Link to post
Share on other sites

Ohh yes it's hard... Right there with you.

My mom keeps threatening to send me to an "eating disorder clinic". She takes me to the emergency room and tries to persuade the doctors that I have an eating disorder because I do not eat gluten and lactose. Because I'm self diagnosed and too late for testing... they seem to be on her side.

Quite a hard place to be put for us! But we'll grow from it. All that matters is that you are feeling well

0

Share this post


Link to post
Share on other sites

Ohh yes it's hard... Right there with you.

My mom ...... takes me to the emergency room and tries to persuade the doctors that I have an eating disorder because I do not eat gluten and lactose.

What you need to tell the doctors is if you ate gluten and lactose you would really have an eating disorder - called untreated celiac disease. :P

0

Share this post


Link to post
Share on other sites

I find it fascinating how people give a crap what you are eating or not eating. Your body, your mouth. You can decide what not to eat and what to put in it. End of discussion, no need for further explanation. Maybe it's just me, but who cares. Really, why are other people so concerned with what other people are eating? I think our society is obsessed with food. Nosey? Maybe. Silly...definitely. :angry:

*gets off soapbox*

:D

1

Share this post


Link to post
Share on other sites

OMG reading these posts made me laugh and cringe at the same time. I'm new to this so 'that gluten thing again' seems to be a topic of conversation with just about everyone I eat with. Last week eating dinner with a friend: "All your having is a salad?", my response "Yes, I like salad". But they have so many good things here at this 'SANDWICH' restaurant" I try to explain for the 100th time that I can't eat the bread to no avail so I outright asked the manager if they had gluten free bread for their lovely sandwiches and she said oh no we don't. End of conversation or so I thought. I get my salad and friend says to me 'you forgot your croutons, I'll get them for you"... heavy sigh and want to escape through the bathroom window!

Another friend via email that I love dearly and we laughed about this later when I called her on it.. I said I tried the gluten free frozen waffles and the texture of them was a little strange once I put the syrup on them they seemed to melt on my plate. Lovely friend replies "You should try the whole wheat one's in the health food section at the store they are really good"... I stop, I reread this again and then I ask her if she's gone mad.... she says why zo I explain to her again that wheat has gluten... she feels dumb and says omg I must have been tired when I wrote that, I know that.. Note to self never eat at her house in case she's tired when she's cooking... LOL (I told her that too)

Trying to keep my sense of humor in tact above all else as I venture into the gluten free world that to others seems to be a dark and evil place! :P It's not so dark and evil so far, it's a wee bit texture challenged but I'll get used to it (I hope)

2

Share this post


Link to post
Share on other sites

Since June of 2009 I have been having what I thought were allergic reactions to food. People in my extended family told me it was in my head, even my allergist said I wasn't allergic to red dye after an anaphylactic reaction landed me in the Emergency Room. Since I left him I found a Nurse Practioner who discovered that I was a celiac. I am also allergic to food dyes, potatoes, wheat, shellfish, walnuts, kale and intolerant of almost every grain including rice. My immediate family, husband and two daughters, are not going gluten free and I am sick and tired of being sick and tired. I also have candida issues so I feel like garbage most of the time. Does anyone have any advice on how to manage life with food allergies and intolerances when you live with someone who does not take this seriously and is practically a gluten addict? I have my own pots and pans and some of my own food storage containers. My daughters know that they can't put anything into the containers that mom can't have but I still end up getting sick from cross contamination. I could easily be a food Nazi given my own kitchen but I don't know what to do short of moving out and I can't afford that.

0

Share this post


Link to post
Share on other sites

your aunt and my grandma are very similar! My grandma brought candy for my kids. My youngest is gluten intolerant and she wanted to give her a kit kat bar. I said no because they have gluten in them. She said, "no its cookie" and I said, "yes but cookies are made of wheat flour and that has gluten in it" and she said, "Oh, how about a twix bar instead?'' I said "no, that has cookie too." Then she offered her a meatball, made with bread. I said no. It just went on and on from there =). She understands more now. But she still tries to give her stuff she can't have.

0

Share this post


Link to post
Share on other sites

I have also had that sort of conversation....I remember my dad getting into it with me and saying something like "the label says MAY contain gluten, not that the product DOES contain gluten" and he was suggesting that I should give it a go! lol. I finally said, "Dad, I'll pass. I'm happy with my lettuce wraps right now"

In the end I appreciate that he just doesn't get it. I mean, there is some sort of huge block for him. He is a smart guy, but this 'gluten free thing' just doesn't jive with him for whatever reason. No big deal. I simply REFUSE to engage in any conversation with him on it. If I am at his house, I bring my own food, cutlery, dishware, microwavable container, etc and if he asks "would you like this or that...do you think it contains gluten" i don't even bother trying to educate him. I just say "no thanks, Dad. I'm good"

At the end of the day, he is not going to ever appreciate the nature of celiac disease and that is okay. I know he loves me and now that I've given up trying to educate him, there's no more of those idiotic stress-filled conversations. phew.

KDawg

Hello K-Dawg...I am new. I stumbled upon this site in a panic state with my gluten intolerant daughter having a severe reaction at 430 am this morning. Her father brushes off the diagnosis of her being gluten sensitive although she IS hashimoto's, hypothyroid (she is on cytomel and synthroid since 05) AND pcos and was being treated for parasites and hey she is still young!! lol (that was more of a sarcastic laugh).

I am wondering do you live with your father? Does he at least acknowledge there is a dietary issue causing you discomfort? My husband doesn't really care. In fact he just recently purchased three diff brands of gluteny cookies, muffins, bagels, breads, cereals, croutons, bread sticks, pretzels and crackers. I have since gathered them up in a BIG basket and stored them in his work room. Fine. He can have them....just not in the kitchen.

I find myself rising earlier than my daughter to clean kitchen counters, cabinets, handles, light switches, floors, etc for the kitchen is usually contaminated. I have gone gluten free along with her. It just makes sense. I don't know if her father is suffering from some other issue for this behavior of his borders on cruelty toward his own daughter.

My focus is her safety and her health right now - not his over consumption of gluten/wheat products which arent doing him any GOOD.

Is there contamination issues with you and your family? Thank you.

0

Share this post


Link to post
Share on other sites

I am wondering do you live with your father? Does he at least acknowledge there is a dietary issue causing you discomfort? My husband doesn't really care. In fact he just recently purchased three diff brands of gluteny cookies, muffins, bagels, breads, cereals, croutons, bread sticks, pretzels and crackers. I have since gathered them up in a BIG basket and stored them in his work room. Fine. He can have them....just not in the kitchen.

I find myself rising earlier than my daughter to clean kitchen counters, cabinets, handles, light switches, floors, etc for the kitchen is usually contaminated. I have gone gluten free along with her. It just makes sense. I don't know if her father is suffering from some other issue for this behavior of his borders on cruelty toward his own daughter.

My focus is her safety and her health right now - not his over consumption of gluten/wheat products which arent doing him any GOOD.

Is there contamination issues with you and your family? Thank you.

Oh BeeFree, I just saw this. I had to go gluten free 100% a year ago after positive results, and my daughter a month ago after *her* positive results. At first my husband didn't take me seriously but he's getting better educated and keeping junk out of the kitchen now that it's my daughter too. However, for the past year, especially before my daughter's tests, he bought a multipack of whole wheat pasta! from Costco, giant boxes of Triscuits and most recently a giant box of wheat thins. Are there no gluten free snacks? The most annoying was Costco sized Shredded Wheat. Talk about crumbs. I got really pissed I must say and forbid him from making bread in the breadmaker with flour or cooking pasta in my pots. He has a dedicated wheat pan, but has decided it's mostly too much work and eats gluten free at home. He *has* to have his bags of supermarket bagels in the car for the ride to work though. I think he's kinda addicted to wheat because it's either wheat snacks or beer. Grr...

I think you need to take charge of your kitchen! Give them a pan or two and cook gluten free for them. Let them have a gluten snack in their backpack or work bag if they must. Forbid flour or crumbs at the table. They can eat it when they're at work/school if it's so darn important! Try showing them studies about antibodies not going down from cross contamination and how continued exposure increases risk of lymphomas and other cancers. Hang in there!

0

Share this post


Link to post
Share on other sites

There is a great test that you can do from home. Never need to see a doctor!!! no I don't work there but I had all my tests done with them and tested positive for gluten sensitivity after testing negative with blood tests.

EnteroLab www.enterolab.com

they send everything you need to your home and then send you the results in 3 - 4 weeks. They can also do DNA testing for sensitivities.

I'm having my children tested too since it is inherited.

0

Share this post


Link to post
Share on other sites

That's funny.

I told my brother that I am alergic to gluten and he said that I should try eating organic.

OMG reading these posts made me laugh and cringe at the same time. I'm new to this so 'that gluten thing again' seems to be a topic of conversation with just about everyone I eat with. Last week eating dinner with a friend: "All your having is a salad?", my response "Yes, I like salad". But they have so many good things here at this 'SANDWICH' restaurant" I try to explain for the 100th time that I can't eat the bread to no avail so I outright asked the manager if they had gluten free bread for their lovely sandwiches and she said oh no we don't. End of conversation or so I thought. I get my salad and friend says to me 'you forgot your croutons, I'll get them for you"... heavy sigh and want to escape through the bathroom window!

Another friend via email that I love dearly and we laughed about this later when I called her on it.. I said I tried the gluten free frozen waffles and the texture of them was a little strange once I put the syrup on them they seemed to melt on my plate. Lovely friend replies "You should try the whole wheat one's in the health food section at the store they are really good"... I stop, I reread this again and then I ask her if she's gone mad.... she says why zo I explain to her again that wheat has gluten... she feels dumb and says omg I must have been tired when I wrote that, I know that.. Note to self never eat at her house in case she's tired when she's cooking... LOL (I told her that too)

Trying to keep my sense of humor in tact above all else as I venture into the gluten free world that to others seems to be a dark and evil place! :P It's not so dark and evil so far, it's a wee bit texture challenged but I'll get used to it (I hope)

0

Share this post


Link to post
Share on other sites

That's funny.

I told my brother that I am alergic to gluten and he said that I should try eating organic.

It's surprising how often people think that's the answer, isn't it? My favorite was an acquaintance who thought all my troubles with gluten would be solved if I went on a macrobiotic diet...the one where grains are the main source of nutrition. Then proceeded to give me all these whole wheat and barley recipes. :rolleyes:

0

Share this post


Link to post
Share on other sites

It's surprising how often people think that's the answer, isn't it? My favorite was an acquaintance who thought all my troubles with gluten would be solved if I went on a macrobiotic diet...the one where grains are the main source of nutrition. Then proceeded to give me all these whole wheat and barley recipes. :rolleyes:

OY!!!!!!!!! My friend thinks I can solve a wheat allergy if I fix what she thinks is a leaky gut........I'm sorry, but a leaky gut DOES not cause a major histamine response. She thinks if I follow this fix and take pro-biotics, I will be fixed, and able to eat wheat again...I can't convince her otherwise. It's so frusterating...

0

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
      930,471
  • Member Statistics

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

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • 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: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
  • Upcoming Events