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

Will My Friends And Family Believe Me...

Deanna Marie

Recommended Posts

Deanna Marie Newbie
Deanna Marie
Posted

Hi Guys, I'm Deanna from the UK and have a question for you :)

I am 100% sure that I have a problem with wheat, but I am nervous that my Celiac blood test will come back negative, although I know from experience that I will need to avoid gluten, I am worried about how I explain to my family that I can't eat wheat etc when they ask me 'are you a Celiac?' and I have to say 'no, I'm not'.

Has anybody had a negative blood test and had difficulties with family thinking that 'it's all in your mind, there's nothing wrong with you...just eat food, you're attention seeking, making a mountain out of a molehill' etc?

I am pretty sure that I'm am just having the blood test so that I can hand my family a doctors note with the proof on it arghhhh!

Many thanks for contributing to this wonderful site btw, you've been a great help to me already and I can see you help many others too.

Deanna

P.S. Much to my dismay the blood test results for Anemia will take only 1 week, the results for Celiac...8 Weeks! Shocking!

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

Celiac.com Sponsor (A8-M):


luvs2eat Collaborator
luvs2eat
Posted

I don't know why it matters that the "test" proves you have celiac? If eating gluten free makes you feel better, then what's the problem? I guess it wouldn't matter if it was never an issue... meaning you can simply bring your own food to anywhere away from home and don't eat out a lot or do your own research if you do. I've never had a problem w/ people not believing me or saying anything about it at all cause I've never made any of it an issue. It's not that different from a peanut allergy or even a food dislike. If you get a negative blood test, you simply CHOOSE to eat gluten free cause it's good for YOU. It doesn't matter if people believe you or not... as long as you take care of yourself and do what you need to.

Deanna Marie Newbie
Deanna Marie
Posted
  • Author

That's very true, thankyou, I'm not sure what planet I've been on recently, I feel that I'm actually not sure why I need to prove anything, it may be, and don't laugh, but my mother is very, well, she know's everything and everybody else knows nothing, and I think maybe I am still feel a little scared of her wrath even though I'm nearly 40 :)

I choose to eat gluten free because it's good for me - I may write that on a little post-it note and stick it on my fridge!

Thankyou again.x

I don't know why it matters that the "test" proves you have celiac? If eating gluten free makes you feel better, then what's the problem? I guess it wouldn't matter if it was never an issue... meaning you can simply bring your own food to anywhere away from home and don't eat out a lot or do your own research if you do. I've never had a problem w/ people not believing me or saying anything about it at all cause I've never made any of it an issue. It's not that different from a peanut allergy or even a food dislike. If you get a negative blood test, you simply CHOOSE to eat gluten free cause it's good for YOU. It doesn't matter if people believe you or not... as long as you take care of yourself and do what you need to.

txplowgirl Enthusiast
txplowgirl
Posted

Hi Deanna

I totally undertand where you're coming from. I have never tested because the way my luck is I probably would be negative. BUT, I have told my family members that I have had a positive test because I knew they wouldn't believe me about gluten being the reason for most of everyones health problems.

I have several members with different types of cancers, plus rheumatoid arthritis, thyroid disease and lupus, etc. The list just goes on and on. I have sucessfully talked so far 2 cousins and an aunt into trying the gluten free diet. One cousin has had lupus and seizures for over 25 years. She's been gluten free for over 8 months now and she has been so far seizure free for 2 months. This is a lady who has had seizures every 2 days since she was 10. She's 54 now. Even her lupus is starting to get better.

She has told everyone they can kiss her rear end because they just don't want to believe that it's the food we eat that is causing this.

Right now, i'm trying to talk my brother into going gluten free because he has a lot of health problems that can be resolved if he would just do it. It is hard to convince some people. Like the old saying, "You can lead a horse to water, but you can't make him drink."

I wish you luck.

Deanna Marie Newbie
Deanna Marie
Posted
  • Author

Thankyou for your reply, I know that my mother, brothers and sister and their children all show signs of food intolerance, with three of them already milk intolerent, I suppose in my heart I hope for a postive test result, so that I can say quite plainly say to all of them, please, go and get tested for Celieac as it is a genetic problem.

But I now realise that, the test result isn't the most important thing in the world, it's my experience that really counts. it is wonderful to hear that you have been able to help other family members too, you must have been a little nervous about it to start with.

Now I think back, my Mom and Brother only learnt they were intolerent to milk after I drew their attention to it based on my own experiences...it's almost as if our family believes that all food is good for us and can't be the cause of any illness...I suspect your family had similar beliefs, you have done well to help them...I have to build my confidence first...it does make me giggle to imagine a 54 year old lady saying they can 'kiss my butt'!

I hope that when the results come through, I will not lose heart, either way... I've already put the post-it note on my fridge with a big smiley face :)

Hi Deanna

I totally undertand where you're coming from. I have never tested because the way my luck is I probably would be negative. BUT, I have told my family members that I have had a positive test because I knew they wouldn't believe me about gluten being the reason for most of everyones health problems.

I have several members with different types of cancers, plus rheumatoid arthritis, thyroid disease and lupus, etc. The list just goes on and on. I have sucessfully talked so far 2 cousins and an aunt into trying the gluten free diet. One cousin has had lupus and seizures for over 25 years. She's been gluten free for over 8 months now and she has been so far seizure free for 2 months. This is a lady who has had seizures every 2 days since she was 10. She's 54 now. Even her lupus is starting to get better.

She has told everyone they can kiss her rear end because they just don't want to believe that it's the food we eat that is causing this.

Right now, i'm trying to talk my brother into going gluten free because he has a lot of health problems that can be resolved if he would just do it. It is hard to convince some people. Like the old saying, "You can lead a horse to water, but you can't make him drink."

I wish you luck.

Jill0711 Rookie
Jill0711
Posted

Wow! Eight weeks?!? That is a really long time to wait on results. I thought 1 week to wait on biopsies a long time. I hope that the time passes quickly for you and you get the results you are seeking. In the whole scheme of things, just remember that you are in charge of your own body and your own health. Don't ever apologize for doing what you need to do to take care of yourself even without a positive test. For the record, my test was negative, but my biopsy was positive. It is possible to have a negative test and even a negative EDG and still have Celiac.

Keela Newbie
Keela
Posted

I tested negative for wheat allergies and celiac... When my family asked why I don't eat it I explain what happens to me in graphic detail... Very graphic. They only ask once :)

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

Celiac.com Sponsor (A8-M):


Cypressmyst Explorer
Cypressmyst
Posted

You can just tell them you have Celiac or begin educating them on Gluten Sensitivity/Intolerance. It has to start somewhere and it isn't going to come from the pill pushers (Docs and T.V). This is a grassroots effort. ;)

My family has been skeptical and fascinated all at once. :rolleyes: It is very bizarre.

However I have had several friends go gluten free since I told them about it and the results speak for themselves. B)

  • 4 weeks later...
Deanna Marie Newbie
Deanna Marie
Posted
  • Author

Thank you all, I'm glad to say that I'm feeling less anxious and able to think a little more clearly now that I've stopped eating wheat now. The only person who has dismissed my food intolerance is the CBT counselor I am seeing, who is quite certain that my symptoms are caused by depression and not food, needless to say, I haven't bothered continuing the discussion with her because it was quite clear after one session that she would not be swayed from her belief. Talk about inappropriate bias from a proffesional. I am quite sure that at large number of people with anxiety and depression could be helped by looking at what they eat!

My apologies for putting my post in the wrong section, I initially intended to ask friends and family how they initially reacted to discovering their loved-one had coeliac, but in my hazy, foggy, anxious state of mind didn't quite know what I was doing at the time :unsure:

kind regards

Deanna

nmthommy Rookie
nmthommy
Posted

I tested negative for celiac and gluten sensitivity with the blood test. I then had a stool panel done and it shows that I'm highly gluten sensitive. Less than 10 units is normal. My result is 151 units.

I also say I have celiac because it's treated the same way. I highly recommend the stool panel test with EnteroLab. www.enterolab.com

I also did their other tests one being a DNA test that shows I inherited it from my parents and my children have at least one gene. I'm getting them tested soon.

Juliebove Rising Star
Juliebove
Posted

My daughter is not celiac but she has IgG allergies to wheat and some other foods. The typical skin prick at the allergist did not show an IgE allergy. But wheat is still a problem for her.

My mom is not a celiac nor does she show any kind of allergy to wheat. But she still can not eat it. She has Rhuematoid Arthritis and for that reason must avoid wheat and nightshades. If she does not, her joints swell and she has a lot of pain.

I have IgG food allergies, OAS (oral allergy syndrome), GERD and gastroparesis (slowed digestion). For these reasons there are certain foods I simply can not eat. I also can't tolerate garlic except in very small proportions. Gives me horrid stomach pains. Oh yes, and then there is the diabetes. Have to watch the carbs.

I can think of one person I know (who shall remain nameless) who does not believe that any of us have a problem with these foods. And we do not think very highly of him for that and other reasons.

If you have a problem with wheat and tell your friends this, but find that they do not believe you, then they are not really your friends.

mcc0523 Newbie
mcc0523
Posted

Thank you all, I'm glad to say that I'm feeling less anxious and able to think a little more clearly now that I've stopped eating wheat now. The only person who has dismissed my food intolerance is the CBT counselor I am seeing, who is quite certain that my symptoms are caused by depression and not food, needless to say, I haven't bothered continuing the discussion with her because it was quite clear after one session that she would not be swayed from her belief. Talk about inappropriate bias from a proffesional. I am quite sure that at large number of people with anxiety and depression could be helped by looking at what they eat!

My apologies for putting my post in the wrong section, I initially intended to ask friends and family how they initially reacted to discovering their loved-one had coeliac, but in my hazy, foggy, anxious state of mind didn't quite know what I was doing at the time :unsure:

kind regards

Deanna

I would think about getting a new therapist. Yes, they "only" deal with emotional problems, but the good ones will recognize that physical illnesses can have things like depression and anxiety as symptoms, sometimes the only symptoms. In fact, it was a psychologist friend who first told me to consider vitamin deficiencies, perhaps caused by celiac or something else that causes malabsorption, and that he didn't believe that I ONLY had problems with depression/anxiety.

Something like that (that she doesn't believe that food intolerances can lead to symptoms, even after you told her that it does do that to YOU) is a major no-no for me in a therapist and a sign that they should be fired, if at all possible.

  • 3 weeks later...
brittanymaine Newbie
brittanymaine
Posted

Your family should only want the best for you, I don't see why they wouldn't believe you. If they don't believe you have an allergy to gluten, you should explain to them what could happen to you if you continue to eat gluten

WW340 Rookie
WW340
Posted

I am not sure why people that have celiac disease or gluten intolerance feel the need to produce proof to friends and family.

I was "classically" diagnosed, however, I have never shown any family member or friend my results. It never occured to me that maybe someone would not believe that I had it.

How many people with various food allergies are expected to present proof of such allergy?

Lactose intolerance is most frequently diagnosed by elimination, yet, I don't see people really concerned about whether or not someone will believe they are lactose intolerant.

You were sick. You have been tested by elimination. You feel better on the diet, and your symptoms are improved or resolved on the diet. Case closed!

If you treat this very matter-of-factly, they will get it. There may be some initial confusion about what the disease is and what it entails, but you can help them understand that by providing information about the disease.

I really think some folks misinterpret lack of knowledge about the disease with not believing you have it. I know lots of people find it pretty unbelievable that there are people in this world that cannot eat wheat. I simply educate those people.

Takala Enthusiast
Takala
Posted

Some people's relative's are more..... difficult than others. :P

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • 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.