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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.