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

In-laws


LynnR

Recommended Posts

LynnR Explorer

My in-laws do not understand & do not want understand what having celiac disease is like. They brush it off like it is nothing.

Both my husband & I have sat down with them trying to explain everything to them. But it is like they don't care.

I used to invite them over for dinner every once in a while but I stopped when I got so sick. I can't remember the last time we were invited over there. Maybe about 5 years ago or so.

Everyone complained that we don't get together for the holidays. So last Christmas, even though I felt terrible I invited everyone over for Christmas dinner. We both felt this would help the family get back together again. Easter came & went and no one invited us anywhere. My sister-in-law asked what we were doing for Easter & I told her that I didn't know. So she mentioned to me that they would probably end up going over to her mom's (my mother-in-laws).

Again this Thanksgiving we put something together & we are all going out for dinner. I was asked a couple weeks ago from my sister-in-law about what we are having for Christmas this year. I told her that I am not doing it this year b/c I am feeling really terrible. No response whatsoever.

I guess I just had to vent. Why are people so unwilling to understand?


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



Celiac.com Sponsor (A8-M):



dbuhl79 Contributor

LynnR,

Unfortunately, its seems that they're willing to merely focus on themselves and not beyond. I know that may seem harsh, but, they don't understand nor make an effort to, becaues its not happening to them. Sorry you have to struggle with a group that's so understanding. If it comforts you any, I'm heading to the "in-laws" for Thanksgiving dinner, in fact his aunt's home. I know I will limit what I eat to probably the vegetables, and spend an entire day being fretted over for not having eaten enough. I imagine people would trade for the "overly" caring individuals, but at times it gets very wearing too.

I hope you start to feel better soon, and at some point have a break through with the in-laws. Just know you're not alone!

tarnalberry Community Regular

I'm sorry you're having that difficulty. I guess they don't really need to understand, just accept. But if they can't even do that... then really, what are they doing?

wclemens Newbie

Hi,

It does seem unfair that sometimes others don't or won't take the time or interest to become involved in what is going on in our lives, especially when it is a life or death situation, such as Celiac is. I often think that if they had to walk one day in our shoes, checking each and every label before letting any kind of food pass their lips, or constantly being aware of what is in each and every morsel we eat, then suffering tremendously when we make a mistake (mine reacts as asthma, so I am left gasping for air, or I break out in a rash, or I have up and down mood swings, all of which are uncomfortable and anxiety-provoking) they would understand better, but of course I wouldn't wish this kind of suffering and pain on anyone.

Here is the good part though. I have had this so long (since the age of 8) that I am now stronger and tougher than most people I know, and also more sensitive and caring about what other people are going through, since I have experienced pain myself. I think that even our closest family members don't really realize what it is like to never be able to eat certain foods again, for as long as we live. I have intolerances to all grains, all milk and dairy products, egg whites, and yeast, so I am basically left eating meats, fruits, vegetables, nuts, and seeds.

I am finally, after a lot of years, getting to the point that what someone else says or thinks doesn't make that much difference anymore. Most people don't have a clue as to the discipline it takes to stick with the Celiac diet, much less one that restricts your diet even further. I used to get offended and almost cry at family gatherings and functions. Now I just take along my own food and quietly proceed on with my diet, knowing that most of my family members most likely have the same intolerances I do, but they're not willing to find out or admit that they do. I will be here when they get tired of gaining weight, having sinus problems, thyroid cancer, liver disease, migraine headaches and diabetes. What more can I do? I bought Enterolab test kits for 6 members of my family for Christmas last year, but only 3 have sent the tests off, and the one who learned she has Celiac hasn't changed her diet at all, even though she has already had thyroid cancer.

I love my family dearly. I hope that they, and your in-laws and others, come to their senses and appreciate us more. That would be a true blessing. In the meantime, just seeing how healthy, energetic, and upbeat we are, though we have a serious condition, will have to be enough I suppose. All we can do is try to teach through example and hope that they will come along. Welda

tammy Community Regular

I know that this website provides a great opportunity to vent, cry, learn, teach, chat and share. I do think that there are choices for you, it is just getting through the disheartened fact that people, sometimes family, won't, don't or can't share in your experience.

I make most of Thanksgiving dinner partly for the fact that I can control most of how the meal is made. This year my mother will make the stuffing and bring pumpkin pie. I will cook everything else. Although it only takes care of one holiday, it will suffice for now.

If you aren't feeling well enough to cook a large meal then don't but perhaps you could consider cooking a small meal or ordering take-out for everyone and then you eat whatever you have in the house for yourself.

I hope that you feel well and stay well very soon!

Rikki Tikki Explorer

Dear Lynn R.

I am so sorry that you are feeling the way you are. I have found that a lot of people don't understand what this disease does to us. It seems a lot of people assume that it is just a wheat allergy and not a big deal. It sometimes feels like people think that we just need to get over it. People don't understand that this rules our whole life, every decision we make is controlled by this disease. We can't go out and eat, stop by a friends or family members and have something as simple as a piece of cake, cookie or pie. Heck, we can't even eat a piece of bread! We will never make those we care about understand what this disease does to us. I don't know that we will ever educate everyone about this. It is still not understood by most of the medical community. It is kind of strange, since I was diagnosed with it the disease went from one in every 250 people to one in every 133.

I think the only thing we can control is how we feel about it. There are times it will really get us down, when we will feel like nobody can possibly understand, maybe even feel as if nobody cares. What you can take to the bank is that each and every one of us does understand how you feel! Things are looking up though, look at the new regulations that are going to help us see what is in the food we buy.

But most of all Lynn, know that we are here for you, anytime you want to talk, vent, cry or laugh.

Archived

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

  • 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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

    2. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Have I got coeliac disease

    3. - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

    4. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

    5. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748

    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
    • Jmartes71
      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
    • JudyLou
      Oops! @Staticgypsy, I’ll get the book! Thank you! 
    • JudyLou
      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
×
×
  • 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.