Jump to content

  • 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):

Unsupportive Family B/c No Diagnoses

BrittLoves2Run

Recommended Posts

BrittLoves2Run Apprentice
BrittLoves2Run
Posted

For those of you out there that have not yet been diagnosed, or know you have it but can

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Well, I've had great support from my husband. My son is coming around (he's 9) especially since he's starting to realize this could include him, too.

My parents are supportive but refuse testing. That said, my mother fiddles with gluten-free.

I did tell one cousin and one aunt about my dx after they were scheduled for gallbladder surgery. One didn't even reply to my email, the other replied and said shed keep it in mind (her sister has Crohn's).

I haven't really "come out" more than that. I'm pretty removed from my extended family now, though. That does make a difference. My FIL lives near us and he's supportive but clueless. My uncle is supportive but lives in another state.

I don't walk around saying "I may be Celiac" or "I may have a problem with gluten". I just state it outright. If you figure out gluten is a problem, you can, too.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

Well, I've had great support from my husband. My son is coming around (he's 9) especially since he's starting to realize this could include him, too.

My parents are supportive but refuse testing. That said, my mother fiddles with gluten-free.

I did tell one cousin and one aunt about my dx after they were scheduled for gallbladder surgery. One didn't even reply to my email, the other replied and said shed keep it in mind (her sister has Crohn's).

I haven't really "come out" more than that. I'm pretty removed from my extended family now, though. That does make a difference. My FIL lives near us and he's supportive but clueless. My uncle is supportive but lives in another state.

I don't walk around saying "I may be Celiac" or "I may have a problem with gluten". I just state it outright. If you figure out gluten is a problem, you can, too.

It's good to hear that you have a husband who supports you. I think the most frustrating thing to me is that I think my mom could have Celiac too. She has a lot of the symptoms and her response was "well if gluten free works for you, i'll give it a shot" but she is always playing down how I always feel like crap and making it out like i'm crazy, and frankly, i'm starting to feel that way. My boyfriend is pretty good. He even goes to the appointments with me when he can. Other than that, the rest of my family might not get it at all except my step dad who is a newly diagnosed with diabetes. He had to change what he was eating and his lifestyle. My work people just seem irritated that I keep having doctor appointment after appointment. I just want to know I have it, then I feel like I don't need to defend myself to others.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

For those of you out there that have not yet been diagnosed, or know you have it but can

butterfl8 Rookie
butterfl8
Posted

I was dx'ed 2.5 years ago. My sister was dx'ed after that, and my mom's testing was messed up so they don't think she has it. She knew better however, and went gluten free. That said, I am the most sensitive person in my family. It took (what felt like) forever for my family to accept that. Things they could eat, like various resturants or from shared cookware, hit me everytime. They just didn't want to see/accept/believe that we weren't all identical. Now they do realize that I have to be more strict, and they don't bother me about it.

So for you, why does your family need to know that you weren't dx'ed? Just tell them you were so that they take it seriously. I have only been asked once if I was dx'ed, by a new GP. She didn't ask for any proof, either. I think when you feel and ARE better after eating gluten-free, those who care will notice. And if they are sceptical before, maybe the results will change their minds. But it still make take a couple of years--both for you to feel better, and for them to realize the change. Hang in there!

-Daisy

grayangel Newbie
grayangel
Posted

Definitely know that you are not alone. I didn't feel the need to have the testing. I had already been through years of being poked and prodded and told that there was nothing wrong with me, that it was just "nerves." After eliminating gluten, I had no doubts whatsoever, and I certainly wasn't going to feel miserable again just so I could have confirmation on a piece of paper from doctors who told me I was fine all along.

My fiance has been wonderful, but beyond that, I can almost always feel the eyes roll when I talk about my "diet" with my parents and my extended family, so I basically stopped talking about it. I'm sure that my mom and my sister are both celiac or intolerant. My mom refuses to change and my sister won't try it because she doesn't think she'll have the support of her fiance. We can only lead the horses to water, but we'll drive ourselves crazy trying to make them drink!

When I find myself feeling more isolated (I even skipped out on holidays this year because I didn't want to deal with it, especially the inquiries about putting my kindergartener on the diet, which has eliminated her asthma btw!) I read this forum, and I take comfort in knowing the person who knows me best, who lives with me every day and has seen the suffering I have endured, is 100% supportive -- and I can't really ask for more than that.

But yes, it does get old, and it does hurt, but we're lucky to have a place to go where so many others understand exactly what we're going through. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...