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

Frustrated

fylgja

Recommended Posts

fylgja Newbie
fylgja
Posted

I am celiac. I tested positive multiple times on my blood tests and had one biopsy. I always got migraines, and skin problems, along with my stomach symptoms. My son started having migraines and vomiting last summer, but has had chronic constipation since he was a baby (and he's always been small for his age). He also suffers from gastritis and reflux, like me. He was blood tested positive, but negative biopsy. I took him off gluten anyway and all his symptoms disappear. The problem is getting other people to believe he can't eat gluten. They act like it's a phase I'm going through because I used to be a vegetarian. Once I couldn't eat gluten I started eating meat. I also have PCOS so I can't eat many carbs. I just want people to take us seriously! I even have cousins and their kids that were diagnosed with celiac. My sister can't eat gluten or she gets all over body pains. So I know we can't eat it, but it's not a big deal. There are so many foods without gluten, why does my mother have to give him fudge brownie icecream? Sorry for the vent, but I know you all are the only ones that understand.

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

Celiac.com Sponsor (A8-M):


Cypressmyst Explorer
Cypressmyst
Posted

I've often thought of dishing out a glutenous item in front of those who don't get it and before giving it to them taking out a quart of motor oil and dumping a bit in it and mixing it around and then handing it to them.

They of course wouldn't eat it, its poison.

Just like gluten.

I wonder if such a shock tactic would get through. I have a mega annoyance for people who don't even care to educate themselves on the matter.

Maybe you could do that with the next bowl of fudge ice cream you mom feeds him. Put the oil in it in front of her and then ask her if she would feed it to him now.

:lol:

salexander421 Enthusiast
salexander421
Posted

LOL :lol:

beebs Enthusiast
beebs
Posted

My friend is celiac and her best friend never really believed in it. Kind of thought it was a bit in her head. Anyhow recently she glutened my celiac friend on accident. My friend got so ill, needless to say her best friend takes her very seriously now. It is very frustrating indeed. My mother is celiac and was soooo ill before being diagnosed - just wasted away in front of us all and we were all convinced she was dying of cancer. Anyhow she was diagnosed and went of gluten and a few years later she is looking so much better and has put on weight and her brother still doesn't believe in Celiac or any autoimmune disease. Thinks its all in her head :rolleyes:

kareng Grand Master
kareng
Posted

I am celiac. I tested positive multiple times on my blood tests and had one biopsy. I always got migraines, and skin problems, along with my stomach symptoms. My son started having migraines and vomiting last summer, but has had chronic constipation since he was a baby (and he's always been small for his age). He also suffers from gastritis and reflux, like me. He was blood tested positive, but negative biopsy. I took him off gluten anyway and all his symptoms disappear. The problem is getting other people to believe he can't eat gluten. They act like it's a phase I'm going through because I used to be a vegetarian. Once I couldn't eat gluten I started eating meat. I also have PCOS so I can't eat many carbs. I just want people to take us seriously! I even have cousins and their kids that were diagnosed with celiac. My sister can't eat gluten or she gets all over body pains. So I know we can't eat it, but it's not a big deal. There are so many foods without gluten, why does my mother have to give him fudge brownie icecream? Sorry for the vent, but I know you all are the only ones that understand.

I'm hoping your mother will not be in a position to feed him gluten again. Obviously, you can't leave him alone with her. For some grandmas, that might be enough to get her to behave.

Cypressmyst Explorer
Cypressmyst
Posted

My friend is celiac and her best friend never really believed in it. Kind of thought it was a bit in her head. Anyhow recently she glutened my celiac friend on accident. My friend got so ill, needless to say her best friend takes her very seriously now. It is very frustrating indeed. My mother is celiac and was soooo ill before being diagnosed - just wasted away in front of us all and we were all convinced she was dying of cancer. Anyhow she was diagnosed and went of gluten and a few years later she is looking so much better and has put on weight and her brother still doesn't believe in Celiac or any autoimmune disease. Thinks its all in her head :rolleyes:

Seriously? What is wrong with people? I think the gluten has gone to their brains (In all seriousness) and made them crazy. :yes:

salexander421 Enthusiast
salexander421
Posted

I always send food with my girls and instruct their grandparents that they can only eat what I brought them. Me and my inlaws have a great relationship but I think they're afraid that if they feed them something they're not supposed to that we won't let them keep them anymore, which really they're pretty much right :P My parents understand it a little more so I don't really worry as much with them but I do still pack their food. Now that we recently had our oldest gene tested and she came back positive for DQ2 our families have been taking it a little more seriously. I think they're all realizing they could have it too.

Seriously, I would kindly tell your mother that you love her and want her to be involved with your son's life but if you can't trust her to not feed him stuff he can't have then she'll only be able to have supervised visits. It's our job as parents to protect our children and sometimes that involves protecting them from even close family members. I hope everyone starts understanding, I know that's hard :(

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

Celiac.com Sponsor (A8-M):


fylgja Newbie
fylgja
Posted
  • Author

Yeah, well, I've talked to her. She understands, I think. I guess she never had to watch him sit on the toilet while puking into a bucket in his lap after eating something bad. The motor oil idea is funny. I know I can't protect him forever, but he's only 6! So, since he has known how to read since he was 2, I told him he is reading all the labels himself before eating. He's cool with that, and really is distrustful now of eating anything anyone but me gives him.

sassiskull Rookie
sassiskull
Posted

people don't get it. Its sad. Even those that do actually try still mess up. I personally love my "non doctor" family members that "inform" me that CC is not a problem and I should chill out and use their glutenated collander to drain my daughters pasta. Umm No thanks. I just take mental notes of those that argue with me on how to feed my girl and remind myself they are never to cook for her. My nephew has a severe peanut allergy so my SIL & I have our inside gossip on these family members, we always joke that its like me sending my daughter to her house with a jar of peanut butter and her sending my nephew with a loaf of white bread. Not that that would be funny but its peoples ignorance that is so annoying!

fylgja Newbie
fylgja
Posted
  • Author

My sister and I do the same outside gossip thing. So far her kids don't show symptoms of celiac, but she has it and sees how my mom treats us different from time to time too. If mom bakes a cake she will say my sister CAN'T have it and I WON'T eat it. I don't get why she does this, especially seeing I have been through all the biopsys and blood tests (which she was with me when I got my first results). You would think that of all people she would understand. My mom is also the type that loves drama, and probably has something mentally wrong. I don't say that to be mean to her, I love her, but I'm in my 30's now and have suspected she has a screw lose since I was about 12. You all are so right: If he stays with anyone at all I will always pack ALL of his food. Ugh. There's so many gluten free options now, there's no excuse.

frieze Community Regular
frieze
Posted

My sister and I do the same outside gossip thing. So far her kids don't show symptoms of celiac, but she has it and sees how my mom treats us different from time to time too. If mom bakes a cake she will say my sister CAN'T have it and I WON'T eat it. I don't get why she does this, especially seeing I have been through all the biopsys and blood tests (which she was with me when I got my first results). You would think that of all people she would understand. My mom is also the type that loves drama, and probably has something mentally wrong. I don't say that to be mean to her, I love her, but I'm in my 30's now and have suspected she has a screw lose since I was about 12. You all are so right: If he stays with anyone at all I will always pack ALL of his food. Ugh. There's so many gluten free options now, there's no excuse.

?untreated celiac?

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    2. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    3. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    4. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety

      This article, and the comments below it, may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748
    Taraceliacmama
    Newest Member
    Taraceliacmama
    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

    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.