Family education

[sillyyak52]

I was diagnosed with celiac disease just over a year ago. I never had any gastrointestinal symptoms before I started eating gluten free, and the diagnosis did come somewhat as a shock. The symptoms that led to my diagnosis were fatigue, and an ongoing Iron and Vitamin D deficiency that worsened even when taking supplements. I visited my GP with these symptoms, which consequently led to a positive celiac blood test and eventually a positive biopsy. Since starting the gluten free diet, I no longer have any deficiencies or unexplained fatigue. When I am glutened now, I experience bloating, severe constipation (that often affects my sleep!) and an onset of fatigue. 

My family does not believe that I actually have celiac disease, and thinks that all these symptoms are a 'placebo' effect of being told the 'wrong' diagnosis. Ever since my diagnosis, they have constantly been telling me that I should seek a second opinion. I really don't see the point of getting a second opinion. I trust that the blood test and biopsy were accurate, and the improvement in my blood tests, fatigue and the symptoms I experience now when I now accidentally consume gluten are enough for me. On top of that, if I were to seek a second opinion now, I believe I would need to do a gluten challenge to get an accurate diagnosis, which I am definitely not willing to do just to please my family. 

Because they don't believe in my diagnosis, they think that I take the diet 'too seriously'. They are always comparing my celiac disease to my siblings' mild peanut allergy, and it is so exhausting trying to explain it when they just look at me like I am crazy. For example, since my siblings can eat products with 'may contain peanuts' with no issues, they tell me I am ridiculous for avoiding 'may contain gluten' products when possible.  I am also very careful about cross-contact in restaurants, which they will make similar comments about. I have been told are that "I need to stop being so fussy because I live in the real world". Recently, when I did not want to buy my birthday cake from a local bakery that confirmed their gluten free items are not coeliac-safe, my family told me "Well, who cares? They said it's gluten free. What more could you want? Do you need to take them to court to prove it's gluten free so you'll eat it?"

It is truly so upsetting that after a year they have made no effort to understand celiac disease, and why I am so strict or 'fussy'. I have thought about giving them information to read, but my mom never ever reads anything. Not even her own emails, and will often make me read things and summarise them for her. She is honestly the one who is most difficult and very obviously still sees my celiac disease as something that I choose to believe. 

How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?

[cristiana]

@sillyyak52

Welcome to the forum!

I'm just about to go away for a couple of days but read this and just had to reply.  I am so sorry for what you are going through... it is really tough.

Perhaps finding a short video online which explains the seriousness of celiac disease might help.  Just sit your family down and say, "Please just watch this one video with me."    There is one, here for example, on Coeliac UK, which I think is convincing - What is Coeliac Disease?

https://www.coeliac.org.uk/healthcare-professionals/resources/videos-for-newly-diagnosed-patients/?&&type=r&set=true#cookie-widget

I was watching a TV comedy programme we have in the UK over Christmas called Doc Martin.  If you get this programme where you live, there is a case on the final ever episode (Christmas 2022).  The seriousness of celiac disease is explained in that episode,.

Perhaps watching something rather than reading would help? 

But if you are after something short to read, I am not sure what country you live in but you might be able to find a coeliac charity that produces pamphlets, or perhaps your GP could let you have something?  Perhaps even better, would you be able to attend the GP surgery with your mother and get your GP to explain the seriousness of not complying with the diet?

Cristiana

[Debbie friend]

I understand the weight loss, as I’ve had Celiac for 5 years, and frequent flares. I’ve been researching supplements for those who aren’t absorbing, anyone have suggestions?

[trents]

You are not alone, sillyyak52!

Many on this forum have shared similar experiences. I expect you can relate to this:

All of us probably have experiences in life where we can't relate to what others are having to cope with and just can't understand why they just don't buck up. We haven't walked a mile in their shoes. Hopefully, in time our own experiences will bring more humility and grace will prevail. In the meantime, it's helpful not to let one slice of our life become the whole of it in so far as our relationship with family and friends.

Edited January 13 by trents

[captaincrab55]

Welcome sillyyak52,  I'm not sure of your age or if you live with your parents.  Is there a nurse in your family or friend of the family that may be able to explain your diagnoses?  You can get a second opinion by taking your lab results to another GI Doctor.  

Good Luck!

[Rogol72]

Hi @sillyyak52,

I empathize with you. I would suggest showing them pictures of "dermatitis herpetiformis" which is a complication of undiagnosed/untreated Coeliac Disease. You can find them on Google images. It's pretty alarming to see and it may be the wake up call they need to visually understand what gluten can really do to the body. In this case the skin ... The Coeliac rash that won't go away without a strict gluten free diet and Dapsone treatment (a toxic antibiotic).

I'd also look at @glutenhatesmyguts on youtube  ... a funny educational take on Coeliac Disease ... the clips titled as follows may help ... "Celiac Disease Explained | Why Gluten REALLY Hates My Guts!" and "Story time: I almost ..." This person is on Tiktok also and has a category "Coeliac & gluten-free Info ".

There's plenty of Coeliacs on Tiktok and IG posting frequently and advocating for themselves about the need to be strict and what happens when they get glutened. 

 

Celiac Canada also has good resources on YT, both long and short educational clips  ... @CCACeliac .

Do you know any Coeliacs in your area who could help you explain the need to be so strict? Some Coeliacs have mild symptoms while others have awful reactions to just a few crumbs. Or maybe the nurse could put you in contact with some other Coeliacs or a support group to help you with your family.

Hope this helps you. And keep advocating for yourself no matter what.

[trents]

Rogol72, your recommendation to the OP to "show them pictures of dermatitis herpetiformis" confuses me as the OP does not mention having dermatitis herpetiformis.

[Rogol72]

Hi @trents,

You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?". 

@sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/

I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.

[trents]

@Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.

[knitty kitty]

@sillyyak52,

Count another one in the same boat!  My family has always been in denial.  They said my tummy aches were a ploy to miss school.  My parents passed from health problems associated with uncontrolled Celiac Disease (Abdominal Aortic Aneurysm and Glioblastoma brain tumor).  My sister still has her head buried in the sand.  

I agree with @Rogol72, try the consequences of untreated celiac disease shock treatment.  Sometimes people are just scared of having to change their comfortable lifestyle.

[Rogol72]

@sillyyak52,

If it makes you feel any better, I have a sibling who thinks the dinner table (at fine dining restaurants, and less formal pub grub settings etc.) is a personal buffet table and dips into the food of whoever is sitting beside or opposite to them just to get a taste (no plate is safe!) ... never asks for permission ... and has no consideration of gluten cross contamination even though I've explained it diplomatically with articles, pictures of dermatitis herpetiformis (which I've had for years) like @knitty kitty and I both suggest you do. I avoid that sibling at restaurants now and sit at the opposite end of the table out of arms reach!
I've had similar treatment at a recent siblings 60th BBQ with family and friends (brought my own food and burger), where I was told (in a very rude manner) "tough luck, there's nowhere safe ... just cook your burger on the BBQ" which was cross contaminated ... I stood my ground and asked for a clean frying pan to cook my burger safely and separately. 

[trents]

Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology of these situations is that family and friends try to make you as the celiac feel that you have a mental problem rather than a medical one. The fact is, they are the ones with the mental problem (ignorance and arrogance). It helps to avoid the brow beatdown to reframe it in that sense. But at the same time you must avoid the temptation to develop bitterness toward them which will destroy relationships. Rise above that and keep this one issue in its place so that it doesn't commandeer the whole of the relationships involved. As I mentioned above, I'm sure we can all remember times when we misjudged others because we were ignorant of the facts. One thing that sometimes happens in the celiac social experience is when some of those who were skeptical and critical of a celiac friend or family member find out they themselves have celiac disease. Boy, how that can change their attitude! And keep in mind, some studies have shown that almost 50% of the first degree relatives of those with celiac disease will themselves develop celiac disease. So, @sillyyak52, you may have the last laugh!

[cristiana]

So true, @trents, I was a skeptic myself!