Ok…I’m back. My little blogging semi-vacation is over. Two blog posts in two weeks is totally lame.
I’ve got TONS of emails to get through and I’ll be posting them here in the next few weeks. I figure, if one person has a specific question, there are many out there with the same question. So I’ll do what I can to help. And the more you can chime in, the more we can all help. Thanks in advance.
We’ll kick things off with a mom who just…doesn’t…get it.
She’s got a 16 year old daughter with celiac and let’s just say she doesn’t take it as seriously as she should. Thanks Jimmy Fallon.
Anyway, here’s the frustrating email from the daughter.
Now normally I’m not one to complain, but this is really ticking me off. This isn’t a rant, it’s more of a request for advice.
I’m a 16 year old celiac, diagnosed about 2 years ago. This hasn’t been the easiest of change for me and my mom has been one to keep supporting me throughout it. But I really don’t think she understands the consequences of the disease very well. I’ve noticed a couple of products she uses that clearly state “may contain wheat” in my food. I mean, I would cook myself and I tell her, mom you can’t use these products, but she takes me on a guilt trip and says that “I don’t trust the food she makes for me.” Well, of course I wouldn’t trust it if the products she’s adding have gluten in them.
I’m a celiac that gets no symptoms whatsoever, making this very difficult to explain to her, because she says to me that “Even a little won’t make a difference.” I tell her it does and it still affects me but she won’t budge.
After two years, Im still going to the hospital on a regular basis for a blood test, and with no shock, the doctors finding the harming stuff in my blood, and sending me home again to try harder to keep gluten out of my diet.
How do I explain to my mom that the way she cooks my food is not right?
Your response is appreciated. Thank you.
It’s simple. You explain to her that celiac is a disease. A real disease where gluten attacks your body and causes major damage to your small intestine, leading to a host of other health issues, including cancer.
And how much gluten does it take to set off this autoimmune reaction? One small crumb. One lousy crumb.
So if a product says it “may contain wheat” and your mom gives it to you, she is poisoning you, plain and simple. Ask her plainly: “Why do you want to poison me?” I would love to hear her response.
And Mom…I say this to you: You’ll never win Mother of the Year with this behavior. Listen to your daughter. She is wise beyond her years. I’m not sure where you EVER heard that a little gluten won’t hurt, but it’s wrong. Why would you ever err on the side of endangering your daughter? What benefit do you get from it? Your daughter has celiac disease and she cannot have any gluten. Ever. Got it? Good.
And lastly, my final words of advice to the daughter: Until your Mom “gets” it, don’t eat what she is serving unless you can verify all of the ingredients and how it was prepared. Forget the guilt trip she lays on you. Put it back on her. A parent’s job is to keep their children safe. She is failing you. Tough words to hear, I know and I apologize for my direct approach. Hang tough and please keep me posted.
Anybody out there care to pipe in with some words of wisdom?
Ask her doctor to write her mother a letter. Then call CPS on herself. This is medical neglect. If the State comes sniffing around, mother might behave.
Also, this is child abuse, enough, that the daughter ought to look into emancipation: you have to be seventeen and substantially finished with high school, but it can be worth it where parents are abusive. This kind of behavior tends to follow over into things like paying for college. It’s better for daughter to be considered an independent and be able to get on with her life.
I have heard this kind of story from folks more often than I’d like. Friends whose parents and grandparents refuse to acknowledge the disease. I’m an evidence based decision maker, so as a parent if my child’s health is at stake, I’m going to research all I can. But that’s what I do, I know HOW to research. It might be useful to recommend checking out the University of Chicago Celiac Disease Center website and some of their beginner flyers etc. The mom obviously doesn’t have all the information she needs and may not know how to obtain it.
Guilting the mother could backfire and cause more conflict and less understanding. People are less open to new ideas when they feel attacked. More information and fewer head games is my recommendation.
Here are some good links from UCCDC:
http://www.cureceliacdisease.org/faqs
Their Living with Celiac guide is pretty snazzy.
http://www.cureceliacdisease.org/living-with-celiac
I am not trying to be rude but this person’s minor daughter has had Celiac Disease for TWO years. If she does not have “all of the information” by now it’s disgraceful. Her daughter is a child who was diagnosed at 14. It’s her job to figure to get all of the info right away and absolutely the most simple and piece of all: no gluten whatsoever! How could a parent not figure out everything there is to know about their child’s autoimmune disease two years into it? She absolutely deserves to be guilted because what she is doing is child abuse. She is poisoning her daughter and hurting her chances of having a healthy, long life. If this were a couple weeks in, or even a month, I would take your approach, but not now. What she is doing is disgraceful and dangerous and could eventually Lead to life-threatening complications, it’s not the time for niceties.
To the young lady this is happening to, I’m so sorry. Keep being an advocate for yourself and I wish you all the best.
I don’t wanna be sick, I suffered anemia, a lot of it, before diagnosis. Thank you so much for your support, means a lot! 🙂 Going to try to explaint to my mom again soon!
You are right to be strict about your diet and concerned about you mother’s food. It’s very responsible of you! The earlier in life you treat this, the better your chance of long term health. Keep at it!
I understand her frustration. My mom doesn’t get it either and I’m 23 also diagnosed 2 years ago. Once I moved out and started cooking for myself is when I got serious about it. People don’t understand unless they see you sprint to the bathroom while you’re drinking a milkshake, and all of a sudden crunch on a foreign object. People don’t get it until you’re crying brushing your teeth until your gums bleed trying to get every crumb out of your mouth and still being sick for two days. Keep on being stubborn, you know it’s for your own good.
As a mother of a child with Celiac, among other autoimmune diseases (eosinophilic colitis, lymphocystic colitis, and crohns), I don’t understand this mother. This crap enrages me. I read every single label. If the label is unclear, I contact the company. I completely understand that this poison to my child. On the rare occasions my daughter has accidentally been glutened, I am DEVASTATED! I feel like the worse mother there is because I wasn’t careful enough!! It is the parents responsibility to make sure our children are well cared for to the best or our ability. To lay a guilt trip on a child just for asking for NON POISONED food is appalling. As a parent, don’t you think you should research and learn every detail about your child’s illness??? You can’t get that information from the television or mainstream media. Use a little common sense and LISTEN TO YOUR CHILD!!
And no, I am not sorry if this comes across as mean. Shame on you for hurting your child physically and emotionally.
I am happy to say, my daughter is in remission from her other illnesses. Her last tests showed no active signs of her illnesses, and NO GLUTEN IN HER SYSTEM. Because that is what a caring and responsible parent does!
It is a difficult balance to walk. You wanted to keep them engaged and working for your interests, so you have to put your diplomat hat on. I have found that most people shut down and stop listening and if they discern a critical tone or they feel like you are judging their efforts. It helps sometimes to start with, “here’s what you’re doing right, and I so appreciate that…and here are some changes we need to make to keep me safe”.
One of the most difficult aspects of this disease is depending on the attention and compassion of others.
She will need to hear it from the doctor. Make an appointment and when the doctor once again tells you the numbers aren’t good, speak up and tell him that mom is cooking for you with ingredients that have “just a little gluten” in them.
She has actually, I was there myself with her when they explained it. I guess it just got into my head more than hers. I’m sure its just because I have no real symptoms is what confuses her. Maybe its because I don’t really get sick so she doesen’t know how careful she has to be? But then again being celiac you have to be 100% careful regardless. But yes I’m going to take Dude’s advice on this! Thank you so much for your kind comment I appreciate it 🙂
Mom needs some serious counseling from daughter’s doctors and possibly some mental health counseling. This breaks my heart. Stay strong girl! It’s YOUR health. Celiac affects so many different body systems. A little gluten hurts a lot.
I agree with the suggestion to bring your doctor into the discussion. Inform him/her that your mother is blatantly disregarding your medical needs, and is guilt tripping you when you stand up for yourself. The kindest thing I can think is that perhaps given pop culture’s fad dieters and unfunny celebs, your mom may not yet believe the truth. However, since she has lived with a Celiac daughter for two years and is still behaving this way, I have to suggest that she has some sort of underlying issue. She could be in denial of your condition. Or she could have mental problems of her own which have nothing to do with you, but are externalized as abuse. For whatever reason, her behavior is indeed abusive. Stay strong.
“Why do you want to poison me?” Thank you Gluten Dude, I am using that in the future for all interactions with well meaning friends and family.
I am 45 and was just diagnosed officially 2 years ago after a lifetime of health issues. I believe you may not have symptoms at 16 but when a celiac ages if you don’t completely cut out gluten the problems will start appearing.
Ask your Mom to google other diseases they are now starting to link with celiac.These are all real. As real as your celiac is now. And trust me…they can happen if you are not on top of managing your celiac.
It’s a really tough time in one’s life when you come to realize that your parents are not perfect but human instead. I know it’s easy for all of us responding to get mad at your Mom, but instead if you want her to be compassionate, handle her compassionately…..”Mom, I know you love me and you are trying to keep me healthy but celiac is a real bi&*$ of a disease and I need to be extremely diligent. I need you to be too.” Then maybe you can set aside some time each week to share in which you educate yourselves together about celiac.
Keep making your health your priority. I so admire your strength and determination in taking care of yourself. Know that you are not alone in this struggle. Almost all celiacs have well-meaning people in their lives that just don’t get it.
“I’m a celiac that gets no symptoms whatsoever, making this very difficult to explain to her, because she says to me that ‘Even a little won’t make a difference.’ I tell her it does and it still affects me but she won’t budge.”
Mom is not grasping and does not understand that Celiac Disease is a cumulative progressive disease which gets worse and worse over time by continually ingesting gluten, even in very small amounts, because the damage and inflammation and auto immune reactions are not allowed to heal completely, if at all. Just like a little antifreeze in someone’s daily coffee will most likely not kill a person right away but, after ingesting small amounts often enough, will most surely kill a person over time because our bodies cannot process antifreeze. Mom must realize by continually regularly feeding her 16 year old daughter diagnosed with Celiac Disease small amounts of gluten, even by cross contamination, that she is truly poisoning her 16 yr old daughter…she might as well be using antifreeze.
Well said Dude: “A parent’s job is to keep their children safe. She is failing you.” The sooner Mom realizes this the better. It’s possible the doctor may also not understand how very important it is to not consume even small amounts of gluten over time…some doctors don’t. I did not immediately realize all of the opportunities for cross contamination and the damage being done to me (and received very little help at all from my caring and very competent Doctors) because it takes time to figure all of this out in today’s gluten antagonistic society.
Thankfully, we only have to be diligent, not crazy, about not consuming any gluten because we can live very happy and healthy lives by simply paying attention to what healthy foods we can and do eat. The insidiousness of gluten in our bodies tricks most people into believing a little won’t hurt over time and thankfully a little gluten rarely will not set us back too far – it sets us back but at least not immediate cancer if we accidentally slip up.
Since our symptoms were so varied and relatively minor for many years, my Mom and I never realized we had Celiac Disease until I was dealing with 3 different types of cancer and my Mom was enduring Stage 4 Lymphoma for the third time. Each of us are now cancer free solely by not ingesting any gluten even after the chemo failed to heal my Mom and I could not take any of the medications prescribed to me. Again, and I’m shouting this time because it’s so very important, MY MOM AND I ARE CANCER FREE NOW AFTER SEVERAL YEARS FROM 4 DIFFERENT TYPES OF CANCER ONLY BECAUSE WE DO NOT INGEST EVEN MINUSCULE AMOUNTS OF GLUTEN!
Sweet 16 – please keep being very diligent about what you eat and keep working on your Mom so that she eventually fully understands all she needs to know to keep you healthy & happy all your life. Learning is a process. Your Mom must take your very serious disease very seriously even though she doesn’t see you getting sick. Please let this group know if you keep having trouble with Mom because you are not alone and you have adults who have already lived through the most serious consequences of Celiac Disease and we understand and are happy to help you!
Thank you so much ! Your advice really warms my heart !
My son, aged 14, has recently been diagnosed as having coeliac disease and is just the opposite to the teenager writing here. He too is symptom free and he says that even if I insist on gluten free at home, he will not observe it outside of the home. I have tried to emphasise the damage he could be doing to his health, but his attitude is ‘if I become unwell, I might have to reconsider’ 🙁 If he has a healthy balanced diet with added vitamin supplements, is he likely to absorb more nutrients? My thinking is ‘if he has more than he needs, will he absorb more than if he wasn’t having supplements?
The problem is that we call it a gluten-free “diet.” All people know about health and diet is “cutting down.” Cutting down on calories or sodium. It should be called a “total microscopic elimination of gluten.” Everyone is brainwashed that wheat is the very god and savior. Wrong! Sriram = satan. Tell your mom to have a little Ebola virus – a little can’t hurt. I am one of the sensitive celiacs and I feel every glutening, no matter how small, although when it gets to be microscopic, gastric symptoms get milder. A little wheat in the food has resulted in extreme abdominal pain for more than a month, regressive autism, 44% traumatic brain injury, the accumulation of another autoimmune disease with every glutening, end of career, etc. I have gluten ataxia, which most celiacs and many more non-celiacs eventually get. If I am downwind of a restaurant and smell pancakes or fried chicken or cookies from a bakery or pizza, if I get more than two inhalations, I get ataxia symptoms for (started at two months) four months now. I can’t eat certain brands of eggs, because I get upper GI pain. I can’t be in a house where wheat bread was toasted or pasta was boiled. Someone like you who does not get symptoms is likely to just get cancer someday, if continued to be subjected to what you are being subjected to. I hope you can get in a gluten-free environment and don’t get any more autoimmune diseases. My MS symptoms started in senior year of high school.
I have gluten ataxia. It was allowed to get to the point that I literally could NOT flex my feet or legs. A neurologist was the one who believed that I was honestly sick drew blood and immediately sent me to hospital. That was because I had NO reaction to when he dragged his pen across the bottom of my foot which is impossible to FAKE. (isn’t is sad that I have to use that phrase in association with Celaic).
Anyway, not all the nerve damage heals!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have to say that again — really really loudly
NOT. ALL. THE. NERVE DAMAGE. HEALS………EVER
Nerves are delicate things. They grow back in neuromas and thru muscles and any path possible because life literally can NOT exist without sensory input. But they really hurt – VERY VERY BAD – when they grow back WRONG.
It is nearly criminal that doctors are allowed to claim that “a tiny bit won’t hurt” when considering all the serious damage that victims must live with for life.
BUt that is MY RANT.
You are young. You have time on your side. Your body can still heal. Whatever you do, don’t allow anyone to guilt OR pressure you into eating poison.
I’m trying. Thank you so much for your advice it helps a lot!
Celiac can kill. At 16, you are still a minor.
I don’t know your living situation. But really unless you can afford to purchase all your own foods, you are kinda stuck. I hope you are planning on going to college, getting a great job, and moving out ASAP.
You could drag your mother to your doctor’s office and ask them to explain.
You could find articles on the internet and have mom read them.
You could tell your doctors that you are being forced to eat wheat because of your mother.
You could likely have her arrested for endangering your life.
At the very least, you MUST tell your doctors what you mother is doing. While you allow them to believe that you are not following the diet on purpose, you are developing a reputation for failing to follow doctors’ orders. This is a reputation that could follow you and do more harm. You should not have to suffer for your mother’s ignorant behaviors.
My mom never got it. She made out like she got it. Then she’d “accidentally” put a single noodle in everything that we ever ate as a family. I was over 50 at the time. I stopped ever eating anything that she even stirred one single time. I can’t say that mom wanted to kill me. I can say that she reveled in talking about the severe trials of having a “child” with this horrible disease. I believe she wanted me to have symptoms so she could “prove” it to every around. She was a narcissist.
Celiac will destroy your life. Once those iron stores fall low enough, you will be obviously ill. It also damages the fertility of women. You need to be storing nutrients and fats NOW.
Not understanding how a mother (or anyone for that matter) can purposely harm another person, I don’t know what might actually help. You may have to separate from mother to save your life. It is hard to tell based on a simply email.
Darn correction software. Seitan = satan.
Dr. O’Bryan said in the Children’s & Teen Health Summit, released in February 2015, that in a study of children, diagnosis of celiac at the age range of:
20 33%
In other words, the longer you keep getting a crumb a month, your risk for getting other autoimmune diseases goes up accordingly.
Has your mother been tested for celiac? All celiac expert gastroenterologists agree that all first degree relatives must be tested. Or is that how you got diagnosed? Frankly, as Sarah Ballantine said, “the only compassionate thing to do for a celiac child is for the whole household to go gluten-free.” That includes the pets!
I am very proud of this young person to realize how important this is. I would say that the appointment with the Doctor is the first step. The second step is to say, Mom, I must only cook for myself. The third is to tell her you have to call authorities. I don’t understand after 2 years why she’s doing this. Do you have other problems with her? Do you have a why????
There’s no problem with my mom, she’s not abusive. She is just not as careful as she is supposed to be. I think its because I get no symptoms is what makes her think that “a little won’t hurt.” It may also be because we come from an indian culture where wheat is a primary source is many of our foods? She takes much care of my food but she doesn’t enough and that’s what scares me. I’m of course going to try to take Dude’s advice. Just a sharing of a little memory, I do remember that one time we were out shopping and looking for different spices, and I saw this specific spice, and was about to pick it up, but it said may contain wheat on the back so I put it back. I didn’t buy it after and then I heard my mom say she uses the same one. I asked her why because of course I was shocked and my heart sank because I knew I’d been working hard to be gluten free for a few months now because I’d be getting another blood test soon. She said she couldn’t find the same spice that was needed to make indian foods that were Gluten Free, and that we’ll see how the blood test comes out next time. That hurt me, it did. I know she takes care of me but yeah, I managed to find the same spice that was indeed gluten free! I’ve been looking through the spices she uses just to double check everything, and it’s working out good. Just a matter of explaining to her how careful she must be. Thanks for all you’re advice it was much help 🙂 After two years I’m still alone in this, haven’t met a single celiac in my life, but this community is really all I’ve got! Thank you all so much 🙂
//… it said may contain wheat …/
That’s the curse we all live with. My wife and I (I’m the celiac, she’s careful) love Indian food, and tonight she was doing a Chettinad dish from a new cookbook. It called for asofoetida powder, but we haven’t been able to find any that’s definitely wheat free. So she left it out. But it’s a close call– use the stuff that may (not guaranteed, just possibly) have some wheat starch in it, and get an authentic flavor, or skip it and hope for the best. (The dish was good, anyhow.) And I don’t react strongly, either, so a little of the (possibly poisonous) powder probably wouldn’t have caused me any noticeable problems. But it could have caused some damage. Definitely a judgement call, with insufficient information to actually make a good judgement. So we play it safe. Just in case. Maybe. (Arrrghhh!) But all that said, celiac beats lots of other lifelong diseases, so it’s hard to justify complaining too much.
I hope you have good luck in getting your mom to play it safer. The good news is that, with only an occasional problem, celiac won’t kill you in the few years before you’re on your own. And maybe with time and more information, she’ll come around and you won’t have to suffer too much.
You are very sweet. I have to disagree with you about being abusive. Feeding anyone food that is known to cause bodily damage is abusive. It is no different from someone striking another human being.
Damage is damage.
Just because you don’t notice symptoms right now means nothing. I grew up thinking that everyone hurt everywhere all the time. I was 40 years old at time of diagnosis. For TWO years after, I was constantly amazed to realize that the pain, nausea, dizziness, and exhaustion I lived with all my life were not NORMAL for everyone. I wonder how you will feel when you have a 100% gluten free diet???
I’m a celiac who reacts to any tiny bit of gluten, including cross-contamination, so different than you, but I have been there when it comes to spices. My family is Indian too, and for the first couple of months we had no idea about the level of cross-contamination and “may contain wheat” in so many Indian spices, especially those in bulk from the Indian stores. Those were making me so sick and we had no idea why until I caught the label on the hing powder. Now we never get any spices or other products from those companies. If they can be found from a different, safe, dedicated GF source, we’ll use them. If not, then we don’t. The flavour of a dish may be different, but so be it. Gluten is poison to me, and my mother simply put her foot down and said she will not do anything and keep anything that is so dangerous to her child. We’ve taken to making all our own fresh chutney and other sauces/seasonings. From the whole veg/fruit – it is that important.
And yes, a lot of Indian food is wheat based, but a lot of it is not. Dahl, rice, all the different veg…. those can be easily GF if one uses spices and legumes/rice from a clean dedicated GF facility. How would your mother react do you think to replacing with GF sources? If she (and the rest of your family) can see that they can still eat their familiar foods but have you be safe, it might help?
Wow! My heart goes out to you Sweet 16!
My mom did not “get it” the first time I went home after diagnosis either. Her response was, “but you can have a little bit of gluten.” My response was, “Can you be a little bit pregnant?” She has started to understand in the 2 years since but at 80 yrs dementia and cognitive decline is beginning to show. I basically watch her like a hawk when I go home and/or cook for myself—or I do not eat.
Luckily my visits are short. You do not have that luxury. As unfair as it is, YOU have to take action and involve all your supports—-family, friends, other celiacs, etc.
Medical issues are very real and she may need the full scary chalk board talk with pictures, facts and figures from the doctor, dietitian AND local celiac support groups. I know you are tired, sick and overwhelmed being a teenager forced to take action to stand up to a caregiver, but it has to be done. NOW! Your medical issues will only compound–trust me on this one!
Is there a school counselor, trusted friend, or family member, who can just be your witness at your side while you do this so you are not alone physically? YOU NEED TO TAKE ACTION NOW!
We are all here for you any time.
Warm gluten free hugs,
Donna V.
Thanks so much! I’m too young to die early haha! But I’m pulling through, staying positive through it all as any celiac should. I’ve never met anyone that understood the disease properly. That’s why I love Dude’s blog, it’s been helping me though a lot. I’m going to do everything I can to make sure I can make it right this time! Hopefully my mother doesen’t take me on another guilt trip 😛 Love her lots. Thank you for your kind comment means a lot to me 🙂
Joy, The Daughter,
YOU can do this! Ask your Doc for a dietitian referral, to help explain the diet and cross contamination, etc. They may even have some Indian food recipes or spice substitutes or suggestions as well as local store suggestions. Or even try Google, or Amazon for spices.
Healing is important and the sooner you start the less damage and not as hard to repair. I was diagnosed much later than you and have a number of auto immune issues which all stem from celiac late diagnosis.
Your mother may pack your bags for the guilt trip but it is your choice to accept the ticket! Hard to acknowledge and do but YOU do have the power……I too have many one-way tickets not accepted.
Chin up, eyes open for any hidden gluten.
More Gluten Free Hugs,
Donna V
You are amazing, and doing so well to protect yourself and your health. You know that even a tiny bit is poison. And you have the mental fortitude to make it through this time – lots of good thoughts to you. You will make it!
One thing that’s really helped the people closest to me understand is taking them to expos and meetings of the Gluten Intolerance Group. That way, they can hear from others, not just me, about the danger that the tiniest amounts of gluten can pose for those with celiac disease and NCGS. The meetings I’ve taken them to have featured doctors and other experts who have presented lots of good information. If there’s an expo or support group in your area, consider attending with your mom. The Gluten & Allergen Free Expo and Gluten Intolerance Group websites would be great places to start.
Some family just don’t want to understand. I could not even walk due to Celiac being undiagnosed. Yet, family still didn’t give a hoot until I got sick in front of them.
For the daughter, with the Mom problem, the book “Gluten Freedom” which came out in April 2015 I find to be very good, maybe the best, for understanding celiac disease.
As a practicing dietitian I have to say this does not surprise me in the least. It usually just comes down to laziness. Many of the parents I work with have tons of excuses. They do not have time to cook, they do not want to have to change their diet because their child has to. It doesn’t matter if their child is celiac or has high triglycerides or is diabetic. One mother told me that she did not have money for healthy food and that is why her 14 year old daughter had type 2 diabetes and obesity. The CHILD flat out said “but how can you afford to buy cigarettes, beer and Mountain Dew?” Sad.
Why do people have kids if they are not going to care for them??
I had a doctor tell me she was shocked at the fact that I eliminated soy from my daughter’s diet when we found out she was allergic. I asked, “well, wasn’t that what I was supposed to do?” She said that, sadly, not all parents do especially when there is no outward appearance of an allergy such as hives or anaphylactic shock. I was bewildered. My son can’t have gluten…no gluten. No soy means no soy. Right?!
THANK YOU ALL FOR YOUR WONDERFUL COMMENTS! I can’t explain how grateful I am to have contact to such a great community that can help me at any time! Going to use the pieces of advice hopefully I will be able to make her understand! I think one of the big issues of being the only teenage celiac in a family is that no one realizes what it’s like to be in your position. Our culture generally has foods that needs wheat to be made. Shoutout to the moms out there that do everything they can for their children with celiac! My mom’s getting there she just needs a bit of a talk. It’s hard to make her understand because I know she thinks she’s doing whats best for me but I will not give up! Thank you for all your motivation, really! 🙂
That’s key – you won’t give up. As I said above, I get coming from an Indian family where wheat is a common ingredient. Do you think that showing her alternate Indian dishes that don’t use wheat (say, using millet, jowar (sorghum), rice, etc.) would help? It sounds like you and she generally do have a good relationship, but something is holding her back in this case. Could it be fear that her familiar food will not be possible anymore? If she is used to eating, say, roti or other wheat based items all the time, is that the source of her resistance? Can you show her that there are alternate sources for spices, legumes, rice, etc. that won’t make you sick? If you can get, say, cumin or lentils from a clear source, then it is no obstacle to just use that instead of the one from the cross-contaminated company.
I know I’m lucky that my mother was willing to immediately cut out anything that had even the possibility of coming into contact with gluten, even though we all changed how we ate at first. Then we realized that we could keep more than we thought, it was a matter of changing ingredient sources. And what we couldn’t – well, it just meant different and new dishes to explore. A small shift in the bigger picture, considering the adverse consequences in store if I kept having gluten in my system. I really hope your mother gets there too.
One of two things could be going on here:
Mum could be trying her best, but doesn’t understand how cross contamination and “may contain” are important.
Or
Mum doesn’t want to get it. Because reading labels is hard. Because she likes the taste of brand A, and doesn’t want to change to brand B. Because brand B is more expensive. Because coeliac disease doesn’t foot
And I pressed the button before I finished…
Doesn’t fit in with her view of the way you should be.
It’s hard to live with someone who is narcissistic, and yes, they can be manipulative, and sabotage you. And I bet when she speaks to health professionals about you, she is the model of reasonable.
My Dad is apt to call me stupid if I ask questions in a restaurant; believes that if I don’t start eating gluten soon, I’ll never be able to eat gluten (well, no, but since it makes me ill, I can accept that); and is endlessly nagging me.
I don’t have to eat anything he cooks for me (in his world, only women cook) but he still tries to sabotage my career (a whole other story) my marriage (again, a whole other story) and my life in general.
Joy – I’m a mom of a celiac girl and I’m so proud of you for seeking help. You are going to be one fantastic cook because you are taking the initiative to learn what you need to about your own food prep and also making it tasty for anyone, gluten or no. If you have a facebook account search for a celiac group in your area (or even not in your area) for support. The one I am on is called Gluten Free Central Texas and it’s wonderful for asking advice and finding local items – and generally sharing our recipes and concerns. I’m sure there are support groups on the web as well but it’s nice to find one local to you. If you don’t find one then please join ours so you will always have someone to ask questions to. People can help you find spices you need, or change up a recipe to make it safe. Perhaps you can replace everything your mom needs with a gluten free item, or show her where to buy it. There are substitutes for almost everything. There are probably blogs about gluten free Indian cuisine as well. Please don’t think you are alone – there are so many who would love to help you on your health journey!
im sorry it’s like this, but from my experience please if someone expresses doubts about celiac being real, watch ALL your food. when i moved in with my now-husband three years ago his 17 yo son didn’t think celiacs was a “real” thing. After a month or so of explosive diarrhea i developed a bleeding hemorrhoid. it would have gone away with little treatment but i could not find where the gluten was coming from and it got worse and worse. after over a year of my hemoglobin being around 4, yes 4.0 i went from being very agile and fit, to being bedridden, most of my hair fell out, my skin was covered in rashes and constant cold sores, and i was loosing my mind trying to find the gluten. I finally put it together when the now 18yo bragged about “testing” his dads cat allergy and “proving” it was fake. i was dying literally and he watched and kept contaminating my food. i made sure to restrict my food to prepackaged or i would buy and eat immediately so he wouldn’t have time to mess with anything, it worked! i got well enough to have an extremely painful surgery, and am slowly becoming not bedridden. my husband refuses to believe he did it on purpose, even though i did find proof once i knew what i was dealing with. so now as soon as i can i have to start over at another job and try to move out while keeping a eagle eye on my food. i was diagnosed in 1990ish and am 39, going to be divorced soon, and am nowhere near as healthy as i was. please my fellow celiacs stand your ground, a little hurts us alot-it is a “real thing” and it can kill us in alot of ways. and starting over with nothing isn’t easy in the best of times. please protect yourselves and dont be polite!
Holy crap! I’d press charges. I know…easier said than done. Sorry you had to go through this.