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

Feeling Dismissed


Googles

Recommended Posts

Googles Community Regular

I'm not sure if dismissed is the right word. Sometimes when talking about Celiac with people (especially one person) they will bring up that the rate of Celiac (or it's diagnosis) has been increasing over the last 20-30 years. He will then say that it must have something to do with the environment (changes in wheat etc). I'm not challenging whether or not that is an accurate reason (beyond more knowledge about it) for the amount of diagnosis. However, when people say this it makes me feel like they are dismissing my illness. That because it is a change in the "environment" that is causing it, it is somewhat my fault for having it. That it isn't as legitimate of a diagnosis of illness as other people's illnesses. I know this isn't what they are trying to imply, but this is what it makes me feel. Does anyone else experience this or anything similar?


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

I think people are becoming more educated about celiac & doctors ( a few) are understanding the disease more & are more willing to do testing...

I also truly believe that wheat today is not the same wheat our great grandparents ate...as with almost the whole chain .....it has become altered in some form.. I seen today where soon we will be able to buy beef that is grown in a dish rather than from an animal.not for me, any of it..

Millions of people , not enough food so they alter the food to make more faster not better & healthier.....the worlds food chain is tainted for sure....

A few months back rice from overseas was to contain ground plastic & sent to the US for sale...

I don't think your friend was making light of your celiac but trying to figure out or thinking why many have this disease....

just my two cents......

mamaw

kwylee Apprentice

I agree with Mamaw. I would have wondered about your friend's comment about so many people having celiac these days, if it would have been delivered in the vein as, "I see, another one of those gluten avoiders I see in the news". But since it was followed up with a clear and understandable reason for the upswing in diagnoses, I just gathered from your post that the friend was just being logical and almost caring. Of course, I wasn't there and maybe there is much more to it. But no sense being stressed over a comment that meant nothing.

melikamaui Explorer

I had a similar situation happen awhile ago. I posted an article about celiac disease to my facebook page and a friend wrote back questioning why so many people seemed to have the "disease of the day" now. At first I took great offense to her comment, but after thinking about it I decided it's actually a legitimate question and went in search of the answer. Why are so many people being diagnosed now? Why, after nearly 40 years of suffering, did I finally get diagnosed? I came to the conclusion that it is simply because more doctors are aware of it. They used to think it was an extremely rare disease and would therefore not know to look for it. Thanks to the great strides celiac disease has made in Europe I believe that American doctors are finally recognizing that celiac disease is much more common than first thought. This is what I explained to my friend. She genuinely thanked me, and agreed that my theory makes sense. :)

Googles Community Regular

It isn't that I think he is wrong. I understand that he processes his thoughts out loud. And he wasn't trying to be dismissive. It is just the emotional reaction that I was having. I guess since so many people are "gluten light" and are like it is just the "diagnosis of the time" (I work in a field where there are diagnosis that go in cycles and so over diagnosis or misdiagnosis is a problem). I know that my emotional response to his comments are out of proportion to what he said and what he meant. But I still seem to be having an emotional reaction to his comments. I guess that is what I am more talking about. It is my emotional reaction to what he had to say, not what he had to say specifically. I grew up in an abusive family and my feelings and experiences were often discounted as me being over emotional or having unrealistic expectations (to not be abused). So I know I'm really sensitive to feeling like my experience is being discounted.

sharilee Rookie

I was recently diagnosed myself and I have encountered a lot of the same comments. I think most people mean well and are just trying to understand celiac but at the same time it does feel like they are downplaying what we have.

dani nero Community Regular

Seems to me your friend was trying to explain or discuss why "you" are feeling poorly and what is making "you" feel that way because he cares.

We always interpret people's intentions based on the way we are feeling. It's normal to feel that way and have these misinterpretations.. and it's a good thing that you are reminding yourself that your illness is responsible for these feelings and that they are not caused by reality :-)

When I'm feeling down because I got glutened I usually always have negative and dark feelings like no one is on my side and no one understands me when in fact it is the opposite. If I'm having a really bad reaction to gluten, I can isolate myself and stop contacting friends because I see myself as an ugly loser who has no place in this life.

Life would be brighter and easier to enjoy if you keep reminding yourself that your psychology is not so stable when you're off the gluten-free wagon lol :-)


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



Celiac.com Sponsor (A8-M):



kwylee Apprentice

Life would be brighter and easier to enjoy if you keep reminding yourself that your psychology is not so stable when you're off the gluten-free wagon lol :-)

This is so true. I don't have a similar background as you, Googles. I grew up in a pretty well balanced family (as families go, haha), so that wasn't it for me, but I lived with an undercurrent of "dread" for a number of years before I finally found the gluten connection. Now I always gauge my level of health by my feeling of well being, and have found that, although it's never as bad as before, I can sense that same feeling when I do come into contact with CC.

It's so much easier to see people for what they are (or aren't) if you yourself are feeling what I now call "giddy good".

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    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

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.