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

Denial Denial Denial- Long Rant

ItchyMeredith

By ItchyMeredith
in Coping with Celiac Disease

Recommended Posts

ItchyMeredith Contributor
ItchyMeredith
Posted

OH Denial

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hi, Meredith, I'm so glad you eventually did get concrete evidence! And shame on your idiot doctor for not giving you the info in the first place!

3 things keep me from wondering, cheating, even thinking about gluten (and my DH was never officially diagnosed!)

1) The rash I had was so unbearable, I would do almost anything to keep it from coming back.It felt like I was allergic to my own skin. Avoiding gluten is relatively easy--it's free, and I can eat perfectly healthy, tasty food whenever I want.

2) I know without a doubt that my immune system will attack some other part of my body if I eat more gluten. So far it has attacked my thyroid, my skin, my intestines (but somehow I didn't realize I was having any tummy problems until they went away :blink: ), and was just starting to attack my joints when I stopped eating gluten.

Umm, pain and debilitation, or gluten? Gee, that's a no-brainer! I dislike the former a whole lot more than I like the latter!

3) I can bake a gluten-free version of ANYTHING that I used to like in my gluteny days, and there are geniuses out there who have come up with such amazing recipes, I don't feel like I'm missing out on anything except maybe convenience--but that is made up for by the fact that everything I make is homemade, fresh-baked, and free of preservatives and chemicals.

You name it--cakes, cookies, breads, muffins, pizza crust, pies, everything--I can bake it.

And the best part is, even though it all tastes as good or better than the gluteny original, the CRAVING part of it is gone--I can eat 2 or 3 homemade chocolate chip cookies--and feel satisfied! (I used to eat the whole batch in nothing flat.)

The hardest part is getting through those first few weeks of being COMPLETELY gluten-free. FOr those weeks, Fritos and Guittard dark chocolate chips were my best friends! (And I still lost 20 pounds--yay! It's not the carbs, it's the gluten!!!)

Hang in there--it gets SO much better!

If you're dying for a certain dish, post it, and a dozen experienced celiacs will rush to your aid with tried and true recipes!!!

Rosebud710 Apprentice
Rosebud710
Posted

Hi Meredith!

It took me almost 3 years to accept that I needed to be gluten-free. I didn't have the major, immediate reactions so it was easy for me to eat gluten. It is a hard diet to follow and can be expensive ($7 for a loaf of gluten-free bread!!), but you need to know you are helping your body out in the long run. I'm getting better educated on the condition and am strictly adhering to my diet. It's tough, but it's becoming easier as I go along!

Good luck and keep reading these posts! This group is so helpful and informative!

Laura

Offthegrid Explorer
Offthegrid
Posted

I didn't accept it for a while. I was angry and every time I was accidentally glutened, I found myself going on a gluten binge because "I was sick already anyhow." A silly attitude, but it was very tough for me in the beginning.

I have found now that the longer I go gluten-free, the easier it is. I actually used to leave the room and sometimes cry if co-workers had bagels out in the break room. Now I don't even crave them at all and can easily sit through business lunches without raving jealousy or self-pity.

The hardest part in my mind is the social aspect. I still get sick virtually every time I eat at a restaurant, no matter how careful I am to explain it.

Hang in there and stick with it. Treat yourself with something really, really yummy if you have a craving. Want pizza - go get Amy's rice crust. Want a juicy burger? Make yourself one with lettuce as a wrapper. And if you want brownies, there are delicious, delicious mixes and recipes for them.

FootballFanatic Contributor
FootballFanatic
Posted

Just keep remembering it takes time.

The thing that made it hard for me personally, was when I told the people are me (my parents, boyfriend, family, best friends) they all just said, "well at least you know what it is"

And no one acted like it was a really huge deal in my life. It's one of the biggest things that could actually happen in my life! Sure, it's not CANCER or AIDS or LIFE THREATENING, but it is a lifelong condition that we have to make constant sacrifices for.

I still get in denial 4 months later. I don't know when it will finally go away, but no matter what anyone says - it's a big deal and it takes time.

PatBrown Newbie
PatBrown
Posted
Hi, Meredith, I'm so glad you eventually did get concrete evidence! And shame on your idiot doctor for not giving you the info in the first place!

3 things keep me from wondering, cheating, even thinking about gluten (and my DH was never officially diagnosed!)

1) The rash I had was so unbearable, I would do almost anything to keep it from coming back.It felt like I was allergic to my own skin. Avoiding gluten is relatively easy--it's free, and I can eat perfectly healthy, tasty food whenever I want.

2) I know without a doubt that my immune system will attack some other part of my body if I eat more gluten. So far it has attacked my thyroid, my skin, my intestines (but somehow I didn't realize I was having any tummy problems until they went away :blink: ), and was just starting to attack my joints when I stopped eating gluten.

Umm, pain and debilitation, or gluten? Gee, that's a no-brainer! I dislike the former a whole lot more than I like the latter!

3) I can bake a gluten-free version of ANYTHING that I used to like in my gluteny days, and there are geniuses out there who have come up with such amazing recipes, I don't feel like I'm missing out on anything except maybe convenience--but that is made up for by the fact that everything I make is homemade, fresh-baked, and free of preservatives and chemicals.

You name it--cakes, cookies, breads, muffins, pizza crust, pies, everything--I can bake it.

And the best part is, even though it all tastes as good or better than the gluteny original, the CRAVING part of it is gone--I can eat 2 or 3 homemade chocolate chip cookies--and feel satisfied! (I used to eat the whole batch in nothing flat.)

The hardest part is getting through those first few weeks of being COMPLETELY gluten-free. FOr those weeks, Fritos and Guittard dark chocolate chips were my best friends! (And I still lost 20 pounds--yay! It's not the carbs, it's the gluten!!!)

Hang in there--it gets SO much better!

If you're dying for a certain dish, post it, and a dozen experienced celiacs will rush to your aid with tried and true recipes!!!

I also started having celiac symptoms in the form of a rash after the birth of my first child. The rash went away and I didnt have lots of symptoms for 23 years. I just was always amenic or borderline anemic. Finally got diagnosed two and a half years ago.(I was also finally having bowel symptoms). If you continue to eat gluten you can have other autoimmune diseases. My DSs girlfriend is a nurse and just had a young man die due to celiacs. He was homeless and would eat anything anyone gave him to eat(sandwiches and burgers are the usual). He got liver disease due to the celiacs and died. You can also get intesenal cancer. If you get cravings for things with gluten in them you can find recipes. I finally found a great pizza dough recipe(Jules Sheperd). Good luck with your quest.

happygirl Collaborator
happygirl
Posted

Have you contacted a local support group to find a doctor that they recommend? While they may not be able to 100% guide you through it, you may feel more comfortable with a more experienced Celiac doctor.

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

Celiac.com Sponsor (A8-M):


EBsMom Apprentice
EBsMom
Posted

Hi Meredith -

This isn't an easy transition, huh? The thing that has helped me the most is educating myself. I've read every book about celiac disease/GI that I could find, and I've spent hours reading through the archives on this, and other, websites. I didn't have any severe symptoms before figuring out that I needed to give up gluten, so I kept having that creepy intrusive thought process also. Now that I know what *can* happen if I continue to eat gluten, I'm more able to fend off the annoying little thoughts in my head.

The other thing that has helped me is to think about my family. First, I have two kids. I want to be here for them (healthy) as long as possible, and I want to set a good example for them about dealing with adversity and challenge in life. Both of my kids are gluten-free (and cf/sf for my dd) so they look to me to set the tone in dealing with the diet. Secondly, I look at my mother....who has several autoimmune diseases and is not in great shape. I don't want to be in that condition when I'm older. If eliminating gluten is what it takes to keep me from going down that same road, then so be it.

Good luck to you.....hang in there....I do think it gets easier with time.

Rhonda

nutralady2001 Newbie
nutralady2001
Posted

Meredith for me the diagnosis (via biopsy) was a relief and explained 45 years of misery and I'm mad as hell that the docs didn't figure it out long ago or do ANY diagnostic testing just told me I had "IBS" when I was 21 going by symptoms (after having problems since I was 12) and "eczema" when I was 16 and now I've researched and have seen photos I know it's dermatitis herpetiformis

In fact the endoscopy/colonoscopy wasn't even to look for specifically for Celiac , I'd had very low iron and a bowel screening showed blood in both upper and lower GI tracts so was referred to a gastro ( I had never been referred to one) When I explained my "IBS" symtpoms he said it wasn't IBS at all and was leaning towards Inflammatory Bowel Disease

So as well as looking for "nasties" he did biopsies and bingo Celiac Disease

It will get easier I promise. I'm over the moon because a shopping centre a little way from me has a cafe that I've been in to before. I was walking past it the other day and they had a sign out the front saying you could order gluten free Christmas cake and when I went in they now have a gluten free menu!!!!

So I ordered a Christmas cake...they are all home made. I would say the shop has changed hands and the owner has Celiac, I'll ask next time I'm there

loco-ladi Contributor
loco-ladi
Posted

I can eat all the gluten I want, but it wont be right. I can make excuses for the medical profession and even blame them for not figuring out what was wrong before I did, but it doesn't change the diagnosis. I can stick to the diet, but it wont be easy.

This going gluten-free is a life changing choice, in more ways than one........

you will have to change your diet, thats no easy task.

The hardest part of it all......

You have to change your way of thinking!

You can no longer see a food item and say wow that looks good and buy it......

You can no longer walk by and smell that pizza and go buy it......

You can no longer try "just a bite" of that co-workers desert that smells so very good......

I wont lie to you this is no easy task but is it worth it? In my opinion YES! You will be healthy and be able to do almost anything you want..... except eat gluten.

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. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    2. 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.?
    3. 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...
    4. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    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

    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • 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? 
×
×
  • 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.