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

How To Get People To Understand...

LexiBrowni

Recommended Posts

LexiBrowni Newbie
LexiBrowni
Posted

Hi:) My name is Lexi, I'm 18 and I have been gluten free for 4 months now. I knew at first it would be really difficult to live this lifestyle successfully (due to the fact that gluten was a HUGE part of my diet and my entire family is fine and therefore it would still be in the house obviously), but it really hasn't gotten any easier.

I have actually done a great job of staying away from gluten. I think I've only cheated once or twice and then swore I never would do it again because the side effects suck. My symptoms seem to be getting worse though when I do get "contaminated." Does anyone know why that is? My family doesn't understand how gluten affects me and expects me to be fine within an hour... my symptoms can last weeks.

Also... the main point of this post is to ask those who have figured this whole thing out, how they got their family members and friends on board? My family constantly forgets that I can't eat a lot of things. My mom will cook my favorite meals and I just stare at them so unbelievably hungry, but knowing that I can't/shouldn't touch it. And then we'll go to some Italian restaurant... self explanatory. I can have a salad... maybe soup... or not eat. Also, my mom continues to encourage me to eat salads when we go out for my meal. I don't think she understands that salads really don't fill anybody up. I'll be hungry again in like 15 minutes! I AM CONSTANTLY HUNGRY. So how do I get them to understand what I'm going through and to be supportive in this change I am trying so hard to make? Please help! All advice will be appreciated:)

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Were you diagnosed with Celiac or Gluten intolerance? I ask because it sounds like your mom thinks your diet is a choice not a medical need.

LauraB0927 Apprentice
LauraB0927
Posted

Side effect symptoms seem to get worse the longer you are gluten free. I didnt have any stomach problems before I got diagnosed, and now if I eat something by accident, then I feel it much worse now - and I'm only three and a half months in!!

I agree with the above comment - it seems like your family thinks this may be a choice, unless you've had the tests done, if so, I apologize. If you didnt have the blood panels, maybe showing them elevated anti-body levels will "prove" that there IS something wrong. But remember, the tests wont be as accurate since you've been gluten free for four months. What if you picked a restaurant with a gluten free menu the next time you go out as a family? Maybe if your family sees that there are restaurants out there that have both gluten free and "regular" food, they may not give you as hard of a time.

Also, could it be that maybe your parents feel guilty? My mom felt super guilty that I was diagnosed and she's not even sure if she was the one who passed the Celiac to me. Maybe this is a form of denial for your mom? "If we eat at normal Italian restaurants, then everything is fine and we dont have to think about it." Maybe its far fetched, but its the first thing that popped into my mind. I'm so sorry that you dont feel validated. Please continue to come onto the forum for support, I have found it extremely helpful..

Ebonyjade93 Rookie
Ebonyjade93
Posted

Hey Lexi,

I'm 19 and self diagnosed and I find the diet hard sometimes even with my family's support so I feel for you!! You probably have already done this but if you havent Maybe sit down with your family and explain to them how sick you feel when you eat gluten.. Go food shopping with ur mum or dad and check out the gluten free section, at the start I used to cook my own dinners now we cook dinners that can also be gluten free, if they have like a pie or something though mum will get me some steak and veggies for dinner.

It will get easier!! You just have to get your family to see how important it is that you don't eat gluten, and u can't eat salads all the time!!! And good on you for not cheating, I don't either cause of how sick I get, it does suck!!!

I really hope things get better for you!!

Xx

archaeo in FL Apprentice
archaeo in FL
Posted

Lexi, I agree with Kareng that it will be helpful for us in replying if we know if you have Celiac, are gluten-intolerant, and whether you are self-diagnosed or have had blood tests and/or endoscopy?

If you are self-diagnosed, your parents may be in denial or may not want to deal with it, or simply may not be taking it seriously. It's hard for me to imagine that if they did take it seriously they wouldn't help provide food that you can eat.

If I were you, I would ask to accompany whoever does the grocery shopping for your family so you can make sure you have plenty of options, including snacks and some protein bars, or add items you know are safe to the list. When your family goes to a restaurant where you know or suspect you can't eat, I'd eat something before or after - don't settle on a crappy salad if that's all they have - seeing you sitting there with no food while they eat will send a pretty strong message. We've wound up a few places I couldn't eat anything since my diagnosis, but that's pretty much been because of very unique circumstances (going to family gatherings for funerals where I'm unfamiliar with the city and didn't really know the deceased but am there to support family, not the right time for my food needs to dictate where a large group goes!) - otherwise i'm getting pretty good at piping up and saying "I can't/don't think I can eat much/anything at that restaurant, how about _______ instead?" There are a few frozen meals that are gluten-free that are actually pretty decent, nutritionally too, by Amy's and a few other brands - it would be good to keep those on hand for when dinner isn't a good choice for you. It might also be good if you've got room to cook a big pot of soup or pan of enchiladas/lasagna/your favorite food and split it up into portion sizes and freeze for when you don't have anything easy on hand and whoever made dinner that night forgot about you.

Generally, though, I think it's important to have them really understand the issue. Ask them to sit down with you and your doctor to discuss the implications. If you have Celiac disease and continue to eat gluten, you are many times more likely to develop a host of problems, including many cancers, than the rest of the population. If you cut it out, your risk goes down. That means no cheating, either!

tarnalberry Community Regular
tarnalberry
Posted

FWIW, if you learn to pick your salad's carefully, you CAN fill up on them. Salads with cheese, meats, eggs, and beans are in particular going to be the most filling.

That said, four months is a short time compared to 18 years, or even thirty or forty years when you consider how long your parents haven't even considered that a food could make someone particularly ill. If it helps, get a note from your doctor explaining what happens. Or talk to them about how "that little bit of wheat sets off my immune system - like when you get a bad cold - and damages my intestines. only this lasts for weeks!" Eventually, though, you may have to realize that they won't ever get it. I wouldn't give up just yet, but realize it may take a lot of time and a lot of patience and educating on your part.

llama3 Apprentice
llama3
Posted

Writing a letter to my family explaining the situation seemed to help them to finally "get it." They are being much more understanding now. There's also being a broken record, and just giving them time to adjust to the idea.

I hope you're eating enough! If your mom won't cook meals that you can eat, you may need to negotiate a situation where you do at least some of your own cooking. On a side note, I have noticed that I have a much larger appetite since going gluten/dairy free. I used to have very little appetite at all, now I eat like a horse.

Good luck at getting them to understand. In the meantime, this is a great group of people to complain to.

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

Celiac.com Sponsor (A8-M):


justlisa Apprentice
justlisa
Posted

I do not know your symptoms/dx history but...is it safe to assume that your mom has been witness to your "sick"?

Professionally dx or self-dx...I think you're still going to find that folks' eyes just glaze right over when you try to get them to "understand"...let's face it, there are doctors who just don't "get it"...

However... I've been thinking on it and I have an idea...

Why don't you go through the forum and find some posts that tell some of the stories of the members here...how they were feeling, how hard (if at all) it was to be dx (diagnosed), what they did, how their lives have improved, etc, etc... Copy/paste them and print it out...then sit down and read them to your parents... Even if the symptoms aren't all the same, it could be a real eye opener for them... I've found some pretty amazing stories in here...they are made much more so by the fact that almost all of them were hard/long to be dx...if ever. Perhaps these very real and sometimes pretty darn scary personal stories would have some impact...??? I would, also, make sure they understood how, if treated lightly, you could have even worse issues develop (other autoimmune disorders, neurological, crippling joint pain, etc.

I think it's, also, a huge eye opener for them to hear about so many others going through the same thing... This "gluten thing" is very hard for most folks to get a handle on...

In fact...a stick thread with ONLY these types of stories (mini gluten bios) would probably be very helpful for others coming into this forum...just an idea...

Really? Newbie
Really?
Posted

Hello.... I am new to the forum. I was just diagnosed with Celiacs in June 2012 by Biopsy and Blood Panels. I too, am experiencing worsening illness with a gluten free diet. In fact, I never felt so sick in my life. And hungry. I was shocked with my Diagnosis as I didn't suspect anything of a gastric nature really. I have been ill for several years with many complaints, mostly overall feeling of NO ENERGY and not able to explain whats wrong but knowing something wasn't right if that makes sense. I then did develope in March stomach complaints and my doctor suspected a cyst. I had an ultrsound which detected a hemmoraghic cyst on my ovary. I was sent to an OBGYN. By that time, I had extreme bloating. She said the bloating was not the cyst and sent me to a GI. I had a EGD done and they found intestinal damage which led to Celiac finding. Anyway, I went gluten free of course. I have become so sick. I've lost 20 pounds. My throat has been sore for months, my tongue sore and goes from greenish coated to red and burning. My gum bleed on and off. My hands and feet tingle. I have severe headaches and my vision is going bad. I just recently started having chest pains. I went to the ER. They kept me over night and made me do a stress test which showed a healthy heart and no cardiac trouble. I have had extenstive blood workd done for auto-immune diseases and it came back fine. Friday the chest pain returned and has not gone away.

justlisa Apprentice
justlisa
Posted

Really?... I am so sad to hear about all this... you must be very scared and frustrated...

I am far too new to give you any sound advice... I believe you would benefit from speaking with some of the experienced folks here... Might I suggest that you start a new thread? It seems like you would get more response to your specific concerns...

Please hang in there... :)

LauraB0927 Apprentice
LauraB0927
Posted

Hello.... I am new to the forum. I was just diagnosed with Celiacs in June 2012 by Biopsy and Blood Panels. I too, am experiencing worsening illness with a gluten free diet. In fact, I never felt so sick in my life. And hungry. I was shocked with my Diagnosis as I didn't suspect anything of a gastric nature really. I have been ill for several years with many complaints, mostly overall feeling of NO ENERGY and not able to explain whats wrong but knowing something wasn't right if that makes sense. I then did develope in March stomach complaints and my doctor suspected a cyst. I had an ultrsound which detected a hemmoraghic cyst on my ovary. I was sent to an OBGYN. By that time, I had extreme bloating. She said the bloating was not the cyst and sent me to a GI. I had a EGD done and they found intestinal damage which led to Celiac finding. Anyway, I went gluten free of course. I have become so sick. I've lost 20 pounds. My throat has been sore for months, my tongue sore and goes from greenish coated to red and burning. My gum bleed on and off. My hands and feet tingle. I have severe headaches and my vision is going bad. I just recently started having chest pains. I went to the ER. They kept me over night and made me do a stress test which showed a healthy heart and no cardiac trouble. I have had extenstive blood workd done for auto-immune diseases and it came back fine. Friday the chest pain returned and has not gone away.

I'm so sorry to hear that you're feeling so sick. What are you eating? Do you know if you're deficient in any vitamins? There could be other food sensitivities that have popped up since your diagnosis and you will have to remove them and slowly add them back in to see if you're having a reaction. My diagnosis was a total shocker too and I too have felt worse since my diagnosis and going gluten free - I'm chalking it up to the fact that my body has to readjust to the new diet. Did you gain weight before going gluten free? I've begun seeing a nutritionist who is experienced with Celiac and its making the world of a difference. She has me on sort of a "recovery diet" where I drink home made broths and doing a lot of things to ease my GI tract while giving myself nutrients too. I'd suggest trying to find someone that could help you with this too. I also became more hungry since going gluten free. I think its our bodies telling us, "Wait, you're feeding us stuff we can actually use now?!?! Keep it coming!!!"

I am not an expert either and am almost as new at this as you are. There are tons of people who are so knowledgeable on this site and I urge you to keep posting, you will get a lot of great help and support! Please let us know how you're doing!!

Archived

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

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


  • Member Statistics

    • Total Members
      131,550
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.