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

Reality Hits Once Again...


num1habsfan

Recommended Posts

num1habsfan Rising Star

Just out of nowhere I started to cry over having Celiac, just because earlier I looked in the fridge seeing 2 of my favourite foods that i cant touch ... this is the first time this has happened in a LONG time ... and i feel like an idiot :(

~lisa~


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



Celiac.com Sponsor (A8-M):



tammy Community Regular
Just out of nowhere I started to cry over having Celiac, just because earlier I looked in the fridge seeing 2 of my favourite foods that i cant touch ... this is the first time this has happened in a LONG time ... and i feel like an idiot :(

~lisa~

I see the forest through the trees on some days and others all I see is a lot of tall sticks with leaves...

I had to come to terms with the fact that I have more bad days than good. I also removed all "BAD" food from my house. Is this possible for you to do? If not, perhaps you could keep a supply of your absolute favorite, safe foods in the house... I just started to keep gluten-free brownies in the freezer for those special moments. Many people at work eat my favorite, unsafe foods often and I must see this. So in order to keep my head above water... I started to bring to work and keep at home my really favorite, safe foods. I love chocolate and I found a snack bar made with honey and sesame seeds that I love!!!

I hope it helps!!!!!!

jerseyangel Proficient

Aw Lisa--don't be too hard on yourself--it happens to all of us from time to time. It's natural to have feelings like that--experience them, and then let it go. :)

nettiebeads Apprentice
Just out of nowhere I started to cry over having Celiac, just because earlier I looked in the fridge seeing 2 of my favourite foods that i cant touch ... this is the first time this has happened in a LONG time ... and i feel like an idiot :(

~lisa~

Why should you feel like an idiot? You're a very normal human being that has a disease that is so not mainstream. It's frustrating at times. After nearly 10 years of this, I'll still look in the pantry and just want to give up - same ole same ole and I don't want to spend outrageous prices for something yummy or cook from scratch. At least this forum is a safe place to vent and find out you're not alone.

Annette

Lymetoo Contributor

I hear ya, Lisa! I"ve struggled for years with my health. I also have Lyme disease which is so misunderstood by the public. People have no clue how bad it is. Now I found out I'm celiac too and I've had it a LONG time, I'm sure.

I haven't cried yet, but I'm pretty down today as well. Crying is good for the soul and for your emotional well-being. Go for it! :)

Mango04 Enthusiast

Don't feel like an idiot. You can cry over food! Just go make yourself a yummy gluten-free pizza or cake or something :D

Lisa Mentor

Lisa:

I can truely relate. It will be a year in August in my attempt to be gluten free. I have not had the outcome that I wanted to achieve. It is a daunting task.

It has been a crazy year for me and now, life slows....It is now a point in re-evaluation for me.

I think every step of they way, you need to see where you are and make judgements as to where you are today and where you want to go tomorow.

Yeah, I get mad on the inside about what I have to do to eat. And, I get mad about the effort and the research, and the choice not to eat anything that I don't know is safe. I get mad that I can't go to a wondeful resaurant and order what sounds good. Can get really angry. And then what............

So I get pissed, or I can get over it. Those are the days long ago. They are over for me. So.. you adjust. You learn to be a better cook. Which I am. But I want those days, with a date night with my husband and a choice of a menue was not an issue or a hardship or an issue with the server.

sorry do be a downer tonight, just in that mood............what is the topic, by the way.??

Is this revelant to the post?????????? <_<


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



Celiac.com Sponsor (A8-M):



Ashley Enthusiast

I understand how having Celiac Disease seems unreal. Don't feel that way. You are certainly not an idiot. During the first three months, I would not go to any store. When a commerical came on showing my favorite, gluten-containing foods; the television was turned off. I have days too were it all crashes down and feel bad. In time, it will pass.

Wishing for better days for you :)

-Ash

Ursa Major Collaborator

Lisa, don't feel like an idiot! I get those moments, too. It really is hard sometimes, and it's good you can come here and vent, because we actually understand and won't say (like my daughter at times) things like, "What a baby you are, crying over food!" Well, since they can eat all the stuff I want, they don't have a clue what it's like!

So, I say, it's okay to sometimes cry over what you've lost, and then move on. It would only be a problem if you would be upset about it all the time.

num1habsfan Rising Star

Thank you guys for saying that I'm not dumb, and showing that I am not alone. I dont get it -- I have seen this food a zillion times before, and NEVER had a problem with it before ... so why it set me off now, I dont know.

Its not like I dont accept Celiac, maybe its just that everything else today is making me sad lol

~lisa~

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. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

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

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748

    kathleen apodaca
    Newest Member
    kathleen apodaca
    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

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.