Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mom Thinks I Was Cursed By The Devil...lol! Rant


Bravie

Recommended Posts

ravenwoodglass Mentor

I agree that your Mom is most likely an undiagnosed celiac. She is showing a lot of symptoms of serious mental illness. You should get out of there for your own safety. I am going to suggest that you immediately contact your local womens shelter. Catholic Charities is also an organization that may be able to help and you don't need to be Catholic to get help. The Salvation Army may even be able to link you to help. They can get you to a safe place for the couple of months until you can get into someplace with you boyfriend. Once you are safe then you can look into getting her some help.


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



Celiac.com Sponsor (A8-M):



  • Replies 52
  • Created
  • Last Reply
JNBunnie1 Community Regular
I agree that your Mom is most likely an undiagnosed celiac. She is showing a lot of symptoms of serious mental illness. You should get out of there for your own safety. I am going to suggest that you immediately contact your local womens shelter. Catholic Charities is also an organization that may be able to help and you don't need to be Catholic to get help. The Salvation Army may even be able to link you to help. They can get you to a safe place for the couple of months until you can get into someplace with you boyfriend. Once you are safe then you can look into getting her some help.

I think the best thing for you is to get out of that house, I agree with raven. I'm just curious, is there some reason you can't move in with the BF right away?This is obviously completely unhealthy behavior, and you shouldn't have to be dealing with something so stressful. It may be that the ongoing stress of being attacked at every turn is what's keeping your body tired and down. I get horrid physical symptoms in times of great stress, It's kind of irritating, but that may be what's happening.

And as for the PC outcry on the message, I understand that some people's feelings are easily hurt, but that's completely off-topic, and noone was trying to hurt anyone's feelings.

silk Contributor
My mom thinks that me and my male twin ( he was stricken with chron's and I believe he may have celiac disease too) are cursed by the devil, because we are the only two in our family that we know of with auto immune disease...We tried explaining to her that these things obviously run in our family (Diabetes is pretty high on my father's side of the family, I honestly think it might be linked to celiac). But no. She is sticking to the fact that "we were cursed by the devil because of our 'wrong doings'" (Wrong doings meaning, we make mistakes like forget to turn off the bathroom light and accidently fall asleep on the couch. So basically 'we are being cursed' because we're not perfect, or atleast thats how she sees it) :rolleyes:

Seriously!??? She thinks you're evil because you forget to turn off lights or accidentally fall asleep on the couch! :o I am so sorry for you. If you are evil for that then..well. I am almost 50 and frequently fall asleep on the couch or move there in the middle of the night. I have been a night-time roamer most of my adult life and rarely ever wake up in the same spot that I went to sleep in. I must be absolutely possessed! How do we perform and exsorcism? Pillow fight? And you get grief because you're not perfect? Let me guess? She is! I swear your Mom and mine are related. Always knew I was snatched at birth!

The thing that bugs me the most though is the fact that she expects me to clean up the kitched space when I finish cooking, which I do each and every night. However, after she makes dinner, she leaves all kinds of gluteny stains and messes everywhere, my brother usually has to clean them up since my skin reacts to touching gluten. I mean, its just not fair! And its hazardous to my health! I've told her time and time again that I cannot get contaminated by crumbs and food etc, containing gluten. She thinks its all in my head and that i'm a retard <_<

Personally, I would prefer cleaning a kitchen space over having my mother do it if she is that careless with your health. And CARE-Less is the operative word here. My family cam for dinner this past weekend, including my older brother, who is bi-polar. My husband, children and granchildren are all on board with the CC issues and are very good about taking care not to 'poison' me. Because my brother knows about my illness but has not had too much exposure to the issues since we found out about it, before serving the food I announced to 'everyone' (not wanting to single him or my sister-in-law out) about being careful not to switch spoons from dish to dish so that I would not get toxic waste with my dinner. I thought my brother was going to stroke out. Said " Jesus C! One little bit is not going to kill you!) My husband and kids came un-glued! I thought my husband might do physical damage. So my brother and I retired to the living room where I proceeded to explain things to him. Nicely. Patiently. I understand that he has problems too. But the whole "It's all in your head thing....That just blows me away. Have you ever taken her into the bathroom with you after you've been ill? How does she react to your brother's Crohn's?

Idk if it is her old age or not, but ever since I was diagnosed about a year ago, she's been picking on me alot. I mean, she's been picking fights with me for the past 6 months, EVERY NIGHT! Like saying all this crap about wishing she had perfect kids, and that maybe if me and my twin brother were better, god might not have allowed us to get sick...And to me, I get the impression that she wishes she had 'better kids'. I can't even start up a normal conversation with her without it turning in to an argument, because she'd end up calling me a name or something :angry: It's driving me nuts.

Maybe it is because of my brother's illness that I see similar behavior in your Mom but is it possible that she is bi-polar or has another type of mental illness? Has she been tested for Celiac? It seems that anxiety, depression and mental illness are pretty common events with ' our kind' Or could it be that she might inwardly be feeling guilty because she produced such imperfect freaks of nature? Just kidding. But seriously....her behavior does not seem rational.

I've agreed to move in with my boyfriend in 2 months, but she has been trying to keep me from going. My health is failing living here and she doesn't understand that. And since my boyfriend also follows a strict gluten free diet ( He doesnt have Celiac disease, but he has very severe type 2 diabetes. He doesn't eat processed food. He's well aware of my cross contamination issues, so whenever he's over here, he keeps an eye out on me xD) My mom does not like him because she does not want me to date guys (even though i'll be 21 in 5 weeks!)

What I have learned with my mother and with other family members is that I can not choose them. But I can choose how I deal with them. As Dr. Phil would say, 'what we have here is a toxic relationship'. I have not had contact with my mother for over 4 years and honestly don't plan on ever having contact with her again. My life is happy, healthy and sane without her in it. ( I liken her to a "Harry Potter" Dementor because she sucks the happiness out of everyone and everything she touches. Not just my opinion. My brother does not have contact with her either. I'm not telling you to break off contact with your mom if that is not right for you. But you can at least distance yourself until you can handle your illness and how she treats you.

Just, how do I cope with things until I get out of here? I've tried everything I can to convince her that Celiac disease is the real deal. Has anyone else had to deal with something similar or worst than this before?

Do you work outside the home? Got to school? Have friends that you can hang out with on a frequent basis to avoid being home? Does she work outside the home? If you are already planning on moving in with your boyfriend and things are so bad now, why in 2 months and not now? I wish you luck and will be interested to see how it goes for you. Wish we could all give you a big hug. You can come live in my kitchen. I'm absolutely anal about crumbs! :lol:

Wonka Apprentice
I hope things get better for you, You are not cursed. You are blessed to have found the cause of your ailments so young!!! I hope your mom gets more stable, but if not, it is not your fault.

Itchy girl,

I so relate...beside I am an itchy girl too!!!We are red headed scottish.

My grandmother is mentally ill and my whole family thinks she is crazy. All along I have known that what was "wrong" with me she had too. It scared me to death. I do not want to end up like her. I will never cheat. she had rashes on her hands up to her elbows. I have them on my hands. she also had digestive issues. She is very ill now from melanoma.

Like your brother, in the past I self medicated with rec. substances until I got scared of them too :P After being totally sober for years( I can't drink any alcohol at all) I still would go into altered states. I would just randomnly get stoned. That was always fun in public :lol: I looked like such an airhead.

Another ex-self medicator here too.

JNBunnie1 Community Regular
Another ex-self medicator here too.

Yeah, never really works, or not for long anyway, does it? I just made myself more stupid.

Fiddle-Faddle Community Regular
Pack your things as soon as possible and get healthy. ((HUGS))

I agree, and think you might want to take your brother with you, too! From your description, our mother sounds borderline dangerous.

Bravie Apprentice
I think the best thing for you is to get out of that house, I agree with raven. I'm just curious, is there some reason you can't move in with the BF right away?This is obviously completely unhealthy behavior, and you shouldn't have to be dealing with something so stressful. It may be that the ongoing stress of being attacked at every turn is what's keeping your body tired and down. I get horrid physical symptoms in times of great stress, It's kind of irritating, but that may be what's happening.

And as for the PC outcry on the message, I understand that some people's feelings are easily hurt, but that's completely off-topic, and noone was trying to hurt anyone's feelings.

The reason I havent moved out yet is because my mom goes crazy every time I bring it up...I try to keep her in the best mood possible, and I know that the day that I do walk out of here, it's gonna be scary...I've put it off for 2 months because i'm not looking forward to all the drama :blink: (And I mean, its gonna be bad...Real bad)

I have an older sister who is not sick, my mom said she isnt sick because she lived 'the right way' lol My brother has to deal with my mom every day too. We both worked at the same job for 2 years before we came down sick. Well, my brother was sick with chron's for 5 years, but he is sick even after he takes meds. I had to quit my job last year cuz of my symptoms. I feel pretty stable and well enough to work again, and I'm currently looking for a job, which is very hard in these parts :lol:

I still cant get rid of a couple symptoms, mostly because i've been stressed out every day for the past year. I hang out at my boyfriend's house every day, but my mom doesn't like me going over there because she thinks we're doing naughty things :huh: Which we most definitely are not :)


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
The reason I havent moved out yet is because my mom goes crazy every time I bring it up...I try to keep her in the best mood possible, and I know that the day that I do walk out of here, it's gonna be scary...I've put it off for 2 months because i'm not looking forward to all the drama :blink: (And I mean, its gonna be bad...Real bad)

I have an older sister who is not sick, my mom said she isnt sick because she lived 'the right way' lol My brother has to deal with my mom every day too. We both worked at the same job for 2 years before we came down sick. Well, my brother was sick with chron's for 5 years, but he is sick even after he takes meds. I had to quit my job last year cuz of my symptoms. I feel pretty stable and well enough to work again, and I'm currently looking for a job, which is very hard in these parts :lol:

I still cant get rid of a couple symptoms, mostly because i've been stressed out every day for the past year. I hang out at my boyfriend's house every day, but my mom doesn't like me going over there because she thinks we're doing naughty things :huh: Which we most definitely are not :)

Does your Mom belong to an organized religion where you could talk to her pastor or priest? Could they perhaps help you with this issue? Do you have any older relatives that she likes and respects? Could you get some assistance from or perhaps stay with them? Also does she have a doctor that you could contact and talk to? Are they aware of how ill she is? You can't get access to any of her records or anything but the HIPPA laws don't prevent you from contacting her doctors and talking to them about her irrational behavior. She may have something in her past that is contributing to her fears and feelings. In other words she may feel that her illness is a result of behaviors she did and be projecting this onto you. She is obviously very ill and suffering but don't let the situation become dangerous. When moveout time comes you may need to enlist friends and do it on the sly in one swoop on a day when she is out of the house.

JNBunnie1 Community Regular
Does your Mom belong to an organized religion where you could talk to her pastor or priest? Could they perhaps help you with this issue? Do you have any older relatives that she likes and respects? Could you get some assistance from or perhaps stay with them? Also does she have a doctor that you could contact and talk to? Are they aware of how ill she is? You can't get access to any of her records or anything but the HIPPA laws don't prevent you from contacting her doctors and talking to them about her irrational behavior. She may have something in her past that is contributing to her fears and feelings. In other words she may feel that her illness is a result of behaviors she did and be projecting this onto you. She is obviously very ill and suffering but don't let the situation become dangerous. When moveout time comes you may need to enlist friends and do it on the sly in one swoop on a day when she is out of the house.

All of this is very good advice. (how did you get so smart, raven?) There's also the fact that all of this anticipation is also very stressful, and delaying your moving out will only mean you have to deal with her for longer. She won't behave any better two months from now or a year from now.

By the way, that 'naughty' stuff with your boyfriend? Might be a REALLY good stress reliever about now.............

larry mac Enthusiast
....lBy the way, that 'naughty' stuff with your boyfriend? Might be a REALLY good stress reliever about now.............

JNB1,

You better hope her Mom doesn't read about you're advise :o . I keep getting visions of Sissy Spacek's Mother in "Carrie".

best regards, lm

Wonka Apprentice
Yeah, never really works, or not for long anyway, does it? I just made myself more stupid.

I don't beat myself up about it though. Every experience we have, the good and the bad, help form who we are and I'm rather fond of who I am now. I have more empathy. Having to look so deep into who I was helped me to see others as more than the surface that they present.

You do need to get away from your mother for your own sanity. But what you are experiencing with her is her illness not the person she could be. I agree with ravenwoodglass. Let her doctors know about her irrational behaviour.

  • 2 weeks later...
goldshadow Rookie
My mom thinks that me and my male twin ( he was stricken with chron's and I believe he may have celiac disease too) are cursed by the devil, because we are the only two in our family that we know of with auto immune disease...We tried explaining to her that these things obviously run in our family (Diabetes is pretty high on my father's side of the family, I honestly think it might be linked to celiac). But no. She is sticking to the fact that "we were cursed by the devil because of our 'wrong doings'" (Wrong doings meaning, we make mistakes like forget to turn off the bathroom light and accidently fall asleep on the couch. So basically 'we are being cursed' because we're not perfect, or atleast thats how she sees it) :rolleyes:

The thing that bugs me the most though is the fact that she expects me to clean up the kitched space when I finish cooking, which I do each and every night. However, after she makes dinner, she leaves all kinds of gluteny stains and messes everywhere, my brother usually has to clean them up since my skin reacts to touching gluten. I mean, its just not fair! And its hazardous to my health! I've told her time and time again that I cannot get contaminated by crumbs and food etc, containing gluten. She thinks its all in my head and that i'm a retard <_<

Idk if it is her old age or not, but ever since I was diagnosed about a year ago, she's been picking on me alot. I mean, she's been picking fights with me for the past 6 months, EVERY NIGHT! Like saying all this crap about wishing she had perfect kids, and that maybe if me and my twin brother were better, god might not have allowed us to get sick...And to me, I get the impression that she wishes she had 'better kids'. I can't even start up a normal conversation with her without it turning in to an argument, because she'd end up calling me a name or something :angry: It's driving me nuts.

I've agreed to move in with my boyfriend in 2 months, but she has been trying to keep me from going. My health is failing living here and she doesn't understand that. And since my boyfriend also follows a strict gluten free diet ( He doesnt have Celiac disease, but he has very severe type 2 diabetes. He doesn't eat processed food. He's well aware of my cross contamination issues, so whenever he's over here, he keeps an eye out on me xD) My mom does not like him because she does not want me to date guys (even though i'll be 21 in 5 weeks!)

Just, how do I cope with things until I get out of here? I've tried everything I can to convince her that Celiac disease is the real deal. Has anyone else had to deal with something similar or worst than this before?

your mom should be lucky to have twins. and you guys will be fine
debmidge Rising Star

Bravie: Is your Mom a member of an organized religion or is she "on her own" with this "curse" stuff? If she's a member of a church, then is that church teaching this "cursing" stuff? If so, then this would explain that she's been brainwashed a bit, if not, then maybe she is mentally ill. Even if her church is teaching it, perhaps you can mitigate it by reminding her that even God gave Lazarus (Jesus' best friend) a medical condition which he died from, but Jesus loved him so much, he raised him from the dead and that it was all for the Glory of God? Would that placate her? Maybe if she knew that it's all in God's plan she'd calm down a bit.....

kbtoyssni Contributor
The reason I havent moved out yet is because my mom goes crazy every time I bring it up...I try to keep her in the best mood possible, and I know that the day that I do walk out of here, it's gonna be scary...I've put it off for 2 months because i'm not looking forward to all the drama :blink: (And I mean, its gonna be bad...Real bad)

The drama's going to be there, no matter when you move out. You can deal with it now and be safe or deal with it later. There's nothing you can do in two months to convince her this is a good idea. Honestly, your mother sounds like she's suffering from some sort of mental illness and is emotionally manipulating you. You have to cut your ties. There's always a lot of guilt going against what your mother wants, but you have to do it for you. If you don't start thinking of you and what's best for you, you will live your whole life with an unhealthy emotional tie to her. I still can't find that name of that book, but it talked about roles each family member takes and how hard it is when someone steps out of their role to finally say enough is enough. I would recommended hitting up the local library and checking out some dysfunctional family books. I think they will really help you figure out how to do what's best for you.

Wonka Apprentice

I was talking about this with a friend of mine. She had the same experience when she was young. Her mother still resents her and thinks of her as a fallen woman. She has been with the same man since she was 18, she is now 53. She says get out. It will never be easier. Her mom refuses to believe in her celiac disease and refuses to be tested herself. She has all the symptoms and now the mental deterioration. Sound familiar.

JNBunnie1 Community Regular
The drama's going to be there, no matter when you move out. You can deal with it now and be safe or deal with it later. There's nothing you can do in two months to convince her this is a good idea. Honestly, your mother sounds like she's suffering from some sort of mental illness and is emotionally manipulating you. You have to cut your ties. There's always a lot of guilt going against what your mother wants, but you have to do it for you. If you don't start thinking of you and what's best for you, you will live your whole life with an unhealthy emotional tie to her. I still can't find that name of that book, but it talked about roles each family member takes and how hard it is when someone steps out of their role to finally say enough is enough. I would recommended hitting up the local library and checking out some dysfunctional family books. I think they will really help you figure out how to do what's best for you.

Sounds like a book I read called Toxic Parents. It can help you understand how your parents function better and how to protect yourself better.

kbtoyssni Contributor
Sounds like a book I read called Toxic Parents. It can help you understand how your parents function better and how to protect yourself better.

Yep, that's it! Thanks - I've been trying to remember the name for days.

WriterCat Newbie

Bravie: You are going to be so much healthier when you get out of there.

Know this: God doesn't give hard lives to people who can't handle them, so you're stronger than even you probably know! It's too bad your mom sees illness as a "Godless weakness". The way she's treating you, she's more like the devil than a woman of God, so I wouldn't listen to a word she says. She's obviously a very hateful person to treat you with such disrespect and disregard for your health (by leaving gluteny items sitting around knowing you can't touch them). Grit your teeth just a little longer, then get away from her. I know she's your mom, but she is not healthy for you, especially now when you need to be careful of your health.

I speak from experience, by the way.....I had to leave my mom, too. My issues are a little different with my mom, but the result is the same: she was unhealthy for me and was driving me to nervous breakdowns on a regular basis. I had to completely break away from her...and it's been so much better for me since! I just wanted you to know that, because I know first-hand how damaging your mom's behavior is.

celiacmegan Newbie

My mom is awesome about my celiac because she has it too, but her mom is a complete nightmare. Thank goodness she doesn't live with my mom because I would never go home. Over Christmas break my grandma was there and she insisted on baking gluten-filled things every other day, even though she knows the smell makes me sick. She completely freaked out at me for not helping her frost gluteny sugar cookies even though barely touching gluten makes my hands itch like crazy. For the last week of break I was sick constantly. I begged my mom to be more strict with my gram, but she didn't have the heart.

One night we decided it would be a good idea to put out a list of kitchen rules that would make cross contamination easier to avoid. Oh how wrong were we. Gram went into meltdown mode. She was being bratty and then she started crying and saying how we had too many rules how could she touch anything blah blah blah. I told her I was just trying to stay healthy and she screamed at me "You know we're all suffering here too" (talking about the gluten-eaters in the household). Unfortunately my dad wasn't home because he would have flipped, but I lost it. I was already sick that night from being glutened by her all week and she blames me for her unhappiness? We are all convinced that she has celiac disease, but she's almost 86, so if she does have it, it's not like she'd change her diet. She's made it this far.

I told my mom when she comes back we can't deal with this p%$#@# footing around Gram business anymore. My intestines deserve love, and that women thinks that celiac disease is a joke. All of my grandparents do, actually. I am also a redheaded scott, and I know my red headed great grandma died really early and had debilitating arthritis, I wonder if the arthritis was from the celiac disease she probably gave me....

babysteps Contributor
The reason I havent moved out yet is because my mom goes crazy every time I bring it up...I try to keep her in the best mood possible, and I know that the day that I do walk out of here, it's gonna be scary...I've put it off for 2 months because i'm not looking forward to all the drama :blink: (And I mean, its gonna be bad...Real bad)

You may want to check out advice from women's shelters on leaving an abusive relationship - in a way that creates the least chance for violence.

And you might want to coordinate with your brother. Unless he is less a lightning rod for your mothers' emotional and/or physical violence, he may want to make his own plans and you may both want to leave at the same time? Again, try surfing web or contacting a local crisis line for specific advice.

Hang in there! I believe now my mother was celiac & OCD (hoarding, mostly, but her rage did spring up from time to time - she died 4 years ago). Once I left home (20+ yrs ago), I was fine - and as long as we were together not at my mom's house (or in her car, go figure) she was fine and sweet with me, too. Can't promise that will happen for you, but getting out definitely seems like a (big) step in the right direction.

Mountaineer Josh Apprentice

The devil????? Isn't this 2008? Lol. I'm sorry to hear about your situation but it's pretty comical. For some reason, I have a feeling that talking SCIENCE with your mother may not help. You should make this fun and tell her you joined a cult. Lol....

GhostLady Newbie

Bravie,

I am sorry to hear about what you are going through. I hope you are able to move out soon. I agree with those who suggested moving out right away but I know that is much easier said than done. I too have experience dealing with a mother who doesn't take me seriously about issues including my health. If you ever need someone to talk or vent to, feel free to PM me. I wish you the best of luck.

Dandelion (and those who also commented on this),

While I do understand why seeing the "r" word used would upset you, I really don't think Bravie used it in that way. She was simply quoting something her mother has called her. I knew that as soon as I read her post. I have worked with children and adults with developmental disabilities for many years and have considered some of them my closest friends. I too do not like it when someone uses that word. My kids would never use it but I see the look on their faces when one of their friends says it around me. They know a lecture is coming soon. LOL

I am not trying to start a big discussion about this or anything but I just wanted to make sure that Bravie knows that she didn't say anything wrong and that most of us knew she didn't mean anything by it. She created this topic to ask for help with dealing with her mother and it is easier for us to advise her if we have as much info as possible about the situation, including the type of things her mother says to her.

GhostLady Newbie
The devil????? Isn't this 2008? Lol. I'm sorry to hear about your situation but it's pretty comical. For some reason, I have a feeling that talking SCIENCE with your mother may not help. You should make this fun and tell her you joined a cult. Lol....

I'm sure you didn't mean anything by this and that you were just joking in some way but how can you say that her situation is "comical"? I don't find anything comical about any of it. Her mother is obviously mentally and/or physically ill and that is in no way "comical". Mental illness is horrible for the person who has it and is just as bad if not worse for their family and friends. I know it may seem odd to those who don't have or know anyone with severe mental illness that someone could possibly think that an illness is caused by the devil but sometimes mental illness causes irrational thoughts so anything is possible. There are still ppl who think the devil is responsible for anything that goes wrong, yes, even in 2008.

bon appetit Newbie

I'm sorry your Mom is being such a goof to you. It really is her issue, and moving out may be your only option right now. Just remember that she is only human and subject to all the same flaws and misgivings that plague us all. There is hope that she will come around eventually! Ultimately you have to do what's best for you but don't forget that for all her ranting she does love you, she just doesn't know how to deal with you.

Bravie Apprentice

Thanks for all the responses guys. I was really busy for the past few weeks, trying to get all of my things packed etc. The bad news is I may have to stay here a little longer than i'd like to because of some personal issues, which is really upsetting. My mom has been really immature about my situation these days and it's just driving me nuts. <_< She keeps asking me if I want to eat foods that she prepared (like oatmeal cookies, pizza, and everything with gluten in it) knowing that I will have a really bad reaction to them.

She came in and started making cookies with flour while I was trying to make my dinner lastnight, she didn't care if I got contaminated or not. I am not a happy camper. :angry:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748

    Newest Member

    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

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