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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 Contributor

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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    • Jmartes71
      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
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      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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