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Family that thinks “it’s all in your head.”


SoBannaz

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SoBannaz Rookie

Anyone else have family like this? I’ve been gluten free for a little over a decade now. I was diagnosed as a teenager through a gastroenterologist.  But I still get eye rolls and scoffs when I say I can’t eat certain things. I get compared to other family who have celiac they say “but so and so eats this and they have celiac.” Same with my nut allergies (which has been confirmed by an allergist)  my mother “had” nut allergies growing up and a plethora of other food allergies she tells me I need to eat what I’m allergic to and that it will go away. Even just interacting day to day. It is such a social thing to eat whether it be at work or at home. I feel like my coworkers think I’m being difficult when I don’t indulged.  I have people constantly trying to get me to eat things I know will make me sick. No matter how many times I explain it. Me doing what’s healthy for me seems to bother other people for some reason. 


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captaincrab55 Collaborator

Bonnaz,  IMO it sounds like you have many foolish family members and friends!  There may well be a chance that your mom may have celiac disease.  Keep reminding yourself that Celiac Disease isn't an Allergy that may go away with further exposure!  You may need to consider finding new friends that also have celiac disease.  There are groups that get together in many areas.  They often meet at restaurants that serve Gluten Free Meals.  Good Luck.

 

Scott Adams Grand Master

I totally get where you’re coming from! It can be so frustrating when people, especially family, don't fully understand or respect our food sensitivities. Sometimes, even after years of living gluten-free, the skepticism doesn’t seem to go away, and people think it’s “just a choice” or “not that serious.” With celiac disease and allergies, though, it’s not just a preference—it’s a medical need that can impact you for days if you’re exposed.

You’re definitely not alone in dealing with pressure to "just eat it" from people who might not grasp the consequences. Maybe it would help to reinforce that these dietary restrictions were confirmed by specialists—not just personal decisions—and that symptoms and sensitivities can vary widely from person to person, even within families. As for coworkers, it's understandable to feel like you're being judged, but setting boundaries consistently will hopefully show them that your health is non-negotiable.

Stick with what’s best for you, and know that there are many others who completely understand and have your back.

Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:

 

 

Pat Denman Rookie

"Do not follow after the crowd to do what is bad." Bible. The world is full of crazy people who have little love for their neighbor. Eat what is best for you and ignore their recommendations. 

  • 1 month later...
nanny marley Explorer

Oh yes same here I've been called a weirdo and health aniexty nut even at first my own daughter's were making fun of me but now they have seen the results there's too doing the gluten and lactose free has they both now older have realised they have problems too and threw me ranting on and changing it's helped them to stop suffering early so you keep doing what your doing a true friend will always understand you and help you I couldn't dream of making someone eat something they can't my granddaughter has a bit allergy imagine he saying it's just a nut build your immunity people can be so self centred wen it comes to compromise around food your not crazy your a human being with a different need hold your head up for all the ones in the same boat and you look after yourself regardless of wat anyone says or thinks  a good saying I like the rainbow has many different colours that's why it's so beautiful so shine your colour 🤗

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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