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

Issues With Helping Others Understand That celiac disease Isn't A Psychosomatic Disease...

Rachel W.

Recommended Posts

Rachel W. Newbie
Rachel W.
Posted

Hi, I'm Rachel and I'm new to the forum so I apologize if this topic is similar to others posted.

First a bit of background...I started noticing symptoms in early 2008

I was bloated beyond all imagination, and my stomach was distended to the point that people thought I was pregnant. I had to put lotion on my face four to five times a day just to keep it from flaking. I had rashes, and did I mention painful bloating? Early February of this year my celiac symptoms reached a debilitating point. For three weeks straight I had diarrhea (sorry if TMI) every time I ate, more than once a day usually. I'd heard of celiac disease but was under the impression it was a "quack disease." Those words came back to haunt me lol. I started spending my sleepless nights trying to figure out what in the world was wrong with me, and I found myself on a celiac forum reading about the symptoms of the disease. I had every single symptom but one.

At first I was skeptical, so I stopped eating gluten for a week. Then I started eating it again, and within 12 hours I was living in the bathroom again.

5 weeks ago I gave up gluten for good, and considering my love of Italian food its been surprisingly easy.

Now to the point...

My husband (while loving the gluten free induced weight loss) is skeptical of my problem, chalking it up to a psychosomatic problem. I understand this because ever since becoming gluten-free I've been extremely afraid to eat, and when I do eat I'm afraid it's going to make me sick. I realize I'm probably causing him to not believe me, and my hellish three weeks are laughable to what most people experience before going gluten-free, but I don't know what to do. I understand how he feels, but he does not understand how I feel.

This evening I made supper and didn't realize one of the ingredients contained wheat flour...I was sick within the hour. I also didn't mean for that to rhyme lol

Does anyone else know what I'm talking about? I just want him to realize I'm not making this up. I don't want to be living on the toilet everyday...that's my worst nightmare at this point.

Any advice would be great

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Hi and welcome. I don't have much time so this will be short. Bring him here and get him to read as much as you can. Also visit the NIH website, they have a Celiac Disease Awareness Campaign going on. You should also consider getting at least blood testing done ASAP and continue on gluten until you do so. I am glad you have had such a great response. You have come to a great place for knowledge and support.

mysecretcurse Contributor
mysecretcurse
Posted

Hi Rachel! :)

First of all.. grrrr. :angry: It REALLY rubs me the wrong way when I see these post about people husbands or wives not supporting them, not believing them or other things like that (I even remember a post about a womans husband constantly trying to talk her into eating gluten or something like that- WTF!). Your husband should respect and trust you enough to NOT QUESTION your ability to understand whats going on in your own body. I think thats pretty messed up. Im single now but my ex is still one of my best friends, I was with him during the time I figured out I was celiac and he was very supportive of me and helped me in every way I could and Id never accept anything less, so if I were you Id be pretty angry about this. (not trying to upset you, Im just saying, it upset ME reading this.. because I don't think you should have to "help" him understand it's not psychosematic.. he should just believe you!)

I don't get why people would think this is a "quack" disease.. just curious, why did you ever think that???

This is as much a disease as any other disease.. I don't get where that mentality comes from.

Just the other day I was explaining to someone what happens when I was glutened, and all wide eyed, he goes "REALLY? Wow.. I always thought "gluten" was one of those made up new age BS things"... WTF

Tell your hubby to do some research. Tell him he's lucky you aren't divorcing him too. ;) Id be pissed!

Rachel W. Newbie
Rachel W.
Posted
  • Author
Hi and welcome. I don't have much time so this will be short. Bring him here and get him to read as much as you can. Also visit the NIH website, they have a Celiac Disease Awareness Campaign going on. You should also consider getting at least blood testing done ASAP and continue on gluten until you do so. I am glad you have had such a great response. You have come to a great place for knowledge and support.

Thanks so much! I didn't know about the awareness campaign. Yes I was planning on getting blood work done, but the fact that I'll have to eat gluten again makes me nervous, so I'm trying to muster up the courage as ridiculous as that sounds.

Thanks again for your comment :)

Rachel W. Newbie
Rachel W.
Posted
  • Author
Hi Rachel! :)

First of all.. grrrr. :angry: It REALLY rubs me the wrong way when I see these post about people husbands or wives not supporting them, not believing them or other things like that (I even remember a post about a womans husband constantly trying to talk her into eating gluten or something like that- WTF!). Your husband should respect and trust you enough to NOT QUESTION your ability to understand whats going on in your own body. I think thats pretty messed up. Im single now but my ex is still one of my best friends, I was with him during the time I figured out I was celiac and he was very supportive of me and helped me in every way I could and Id never accept anything less, so if I were you Id be pretty angry about this. (not trying to upset you, Im just saying, it upset ME reading this.. because I don't think you should have to "help" him understand it's not psychosematic.. he should just believe you!)

I don't get why people would think this is a "quack" disease.. just curious, why did you ever think that???

This is as much a disease as any other disease.. I don't get where that mentality comes from.

Just the other day I was explaining to someone what happens when I was glutened, and all wide eyed, he goes "REALLY? Wow.. I always thought "gluten" was one of those made up new age BS things"... WTF

Tell your hubby to do some research. Tell him he's lucky you aren't divorcing him too. ;) Id be pissed!

I'm wondering, what does glutened mean? I've seen it all over the forums and I have an idea, but before I use it in the wrong context I thought I'd ask :)

As for the husband...well I wrote this post right after eating the supper I mentioned. So I was sick/weak and extremely frustrated because he chalked it up to my fear of eating hidden traces of gluten. Once I explained to him that there was in fact wheat flour in the soup I made, he realized he'd been an ass. So at least that has been resolved.

I thought celiac disease was a quack disease because frankly I was uninformed. The first time I read about it was on a forum trying to argue its lack of legitimate evidence supporting it as a real physical problem. So you might say I got a bad first impression, and obviously no longer view celiacs as I once did.

Thanks so much for your comment and advice :)

GFinDC Veteran
GFinDC
Posted

I think people tend to dismiss things they don't understand or aren't familiar with. It turns out the world really isn't flat though! I really didn't believe it was possible to be affected by such tiny amounts of gluten at the beginning myself, and I have the disease! So I can understand other people needing some time to adapt their way of thinking.

Oh yeah, glutened means you accidently ate something with gluten in it.

Tallforagirl Rookie
Tallforagirl
Posted
As for the husband...well I wrote this post right after eating the supper I mentioned. So I was sick/weak and extremely frustrated because he chalked it up to my fear of eating hidden traces of gluten. Once I explained to him that there was in fact wheat flour in the soup I made, he realized he'd been an ass. So at least that has been resolved.

You and your husband will both need time to get used to your new lifestyle. My BF took a while to get used to the idea when I was first diagnosed, because like you I was afraid of eating anything when I didn't know exactly the ingredients. I had no symptoms to speak of, so he couldn't get his head around the idea that one day I was happily eating platefuls of gluten, then the next I was worrying about the smallest crumb.

I agree with Ravenwood glass, it's worth getting the testing done. If nothing else you'll be able to show your husband a piece of paper to prove you have celiac disease!

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748
    4Nic8ion
    Newest Member
    4Nic8ion
    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
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.