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

Thanks For Being Here

Marie1976

Recommended Posts

Marie1976 Enthusiast
Marie1976
Posted

Hi all

Just wanted to say thanks for being here! I have gotten so much support from this forum. Everyone who has responded to my posts, and also just reading everybody's posts lets me know I'm not alone in all this CRAZINESS!

I was happy in some ways to be diagnosed with celiac because at least now I know what's wrong with me. And it's not a fatal disease. All I have to do is not eat gluten (ha ha -- did I think that was going to be so easy? I didn't realize I was going to lose all tolerance for it after quitting it, and not be able to be in the same f-ing room with it!)

I thought a diagnosis was the answer to my problems because I'll just stop eating gluten and yay I'll feel better. Not the case. My main symptom has gotten better but now I've gotten all new symptoms and to make matters more confusing, I don't know if my problems ARE even celiac symptoms or something else. (Right now I'm suffering from depression, fatigue, extreme irritability. Whether I'm being glutened is anybody's guess.)

Anyway. The doctors act like a diagnosis is the end of your problems. They're not real helpful. "You have celiac disease. Don't eat gluten." And then they send you on your way. I guess they assume we will all go home and google it and end up here, where we get answers from real people who have been through this stuff.

Whenever I have questions or feel like NOBODY UNDERSTANDS ME, I can come here and find someone on this forum who has gone through this and it makes me feel better.

Thank you. :)

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

Celiac.com Sponsor (A8-M):


dani nero Community Regular
dani nero
Posted

I thought The same thing only to find out becoming gluten free was only the beginning.

As you stated however,at least we know what the problem is and how to fix it and ita not fatal. we can also go to dieticians for help but the experience that exists here is all we need: )the members are like human celiac encyclopedias and not only do they communicate but also feel compassion.

NickMcKinnis Rookie
NickMcKinnis
Posted

Hi all

Just wanted to say thanks for being here! I have gotten so much support from this forum. Everyone who has responded to my posts, and also just reading everybody's posts lets me know I'm not alone in all this CRAZINESS!

I was happy in some ways to be diagnosed with celiac because at least now I know what's wrong with me. And it's not a fatal disease. All I have to do is not eat gluten (ha ha -- did I think that was going to be so easy? I didn't realize I was going to lose all tolerance for it after quitting it, and not be able to be in the same f-ing room with it!)

I thought a diagnosis was the answer to my problems because I'll just stop eating gluten and yay I'll feel better. Not the case. My main symptom has gotten better but now I've gotten all new symptoms and to make matters more confusing, I don't know if my problems ARE even celiac symptoms or something else. (Right now I'm suffering from depression, fatigue, extreme irritability. Whether I'm being glutened is anybody's guess.)

Anyway. The doctors act like a diagnosis is the end of your problems. They're not real helpful. "You have celiac disease. Don't eat gluten." And then they send you on your way. I guess they assume we will all go home and google it and end up here, where we get answers from real people who have been through this stuff.

Whenever I have questions or feel like NOBODY UNDERSTANDS ME, I can come here and find someone on this forum who has gone through this and it makes me feel better.

Thank you. :)

Concerning what you said about doctors, my experience was exactly the same."Good news! you have celiac disease now you can just avoid gluten, here is a list of ingredients you can't have... here's the bill" Unfortunately, I didn't really start googling until later

Sorry to hear about your depression/irratability/fatigue. I have been gluten free for just over two years now and I seem to get glutened just enough to keep those particular symptoms around. I hope you get the relief you are looking for.

1desperateladysaved Proficient
1desperateladysaved
Posted

I understand about the MD just sending one on their way. I wish it were so easy. I too am experiencing new reachtions and wondering what on earth? I too look at the forum and discover I feel the same things as everyone else.

Adalaide Mentor
Adalaide
Posted

Oh gosh, doctors... my doctor (who I love) actually told me he probably knows less about celiac than me and sent me home and told me to find info on the internet. He didn't hope I did, he TOLD me to! Now I bring him resources so he can give information to his other celiac patients.

You're right, everyone here is awesome. They convinced me I wasn't crazy and that diagnosis isn't the end of the world, it's the beginning of living again. If we have to figure out so much on our own at least we all have each other to get us through.

Googles Community Regular
Googles
Posted

"You have celiac disease. Don't eat gluten." And then they send you on your way.

This is exactly what my Dr. said when I was diagnosed. And it was over the phone no less. Then she was like, we'll send you to a nutritionist. Who was only able to give me list of foods (an outdated list) and said there was nothing else she could do for me. I left that appointment and cried before I had to go back to work. (When there really wasn't a break as I worked at the same hospital that my Dr. was at.) This site saved my sanity when I felt like there was no way I was going to understand what this all meant.

Lisa Mentor
Lisa
Posted

Keep a food journal. You might be able to find what's bothering you. Limit your dairy and get a full metabolic panel done to check for vitamin and mineral deficiencies.

And healing takes time. :)

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

Celiac.com Sponsor (A8-M):


beachbirdie Contributor
beachbirdie
Posted

I thought a diagnosis was the answer to my problems because I'll just stop eating gluten and yay I'll feel better. Not the case. My main symptom has gotten better but now I've gotten all new symptoms and to make matters more confusing, I don't know if my problems ARE even celiac symptoms or something else. (Right now I'm suffering from depression, fatigue, extreme irritability. Whether I'm being glutened is anybody's guess.)

Anyway. The doctors act like a diagnosis is the end of your problems. They're not real helpful. "You have celiac disease. Don't eat gluten." And then they send you on your way. I guess they assume we will all go home and google it and end up here, where we get answers from real people who have been through this stuff.

Some people have found it can take weeks to months before feeling better on the diet. I just started gluten-free in mid-May, and for 3 weeks I was depressed, angry, irritable, moody, achy and very fatigued. Not so much now! Some people DO experience very real withdrawal symptoms, which makes sense since gluten acts in similar fashion to opioid drugs in many people!

Hang in there, it will get better! And as you've found, there are wonderfully supportive people hanging around here!

jnh380 Rookie
jnh380
Posted

Hi all

Just wanted to say thanks for being here! I have gotten so much support from this forum. Everyone who has responded to my posts, and also just reading everybody's posts lets me know I'm not alone in all this CRAZINESS!

I was happy in some ways to be diagnosed with celiac because at least now I know what's wrong with me. And it's not a fatal disease. All I have to do is not eat gluten (ha ha -- did I think that was going to be so easy? I didn't realize I was going to lose all tolerance for it after quitting it, and not be able to be in the same f-ing room with it!)

I thought a diagnosis was the answer to my problems because I'll just stop eating gluten and yay I'll feel better. Not the case. My main symptom has gotten better but now I've gotten all new symptoms and to make matters more confusing, I don't know if my problems ARE even celiac symptoms or something else. (Right now I'm suffering from depression, fatigue, extreme irritability. Whether I'm being glutened is anybody's guess.)

Anyway. The doctors act like a diagnosis is the end of your problems. They're not real helpful. "You have celiac disease. Don't eat gluten." And then they send you on your way. I guess they assume we will all go home and google it and end up here, where we get answers from real people who have been through this stuff.

Whenever I have questions or feel like NOBODY UNDERSTANDS ME, I can come here and find someone on this forum who has gone through this and it makes me feel better.

Thank you. :)

Hi Marie,

Just wanted to say that your post echoes my own experience very closely. I am now exactly 3 months into it and have been struggling with a lot of ups and downs. I now know exaclty what a glutening reaction is, but most times cannot pinpoint what it was I ate. I know I should be hypervigilant and only eat things I know are ok, but it is really easy to get a false sense of security when something says its gluten free. Lately I have been having problems with the cross contamination. Grilles, pans, toaster, etc.

At the three months I have felt soo much better it convinces me I am celiac for sure, but then the next day I will have a really bad reaction to something and I gets me anxious, depressed, and doubting all over again. It is such a roller coaster sometimes. But I can see that I have made improvements in three months, and I am excited about the improvements I will see in the next 3 months. It is a long process and I know there will be more ups and downs along the way.

The hardest part is going through it without much information. Nobaody knows how you specifically will react to the diet changes and how fast you recover. This guessing game can lead to a lot of self doubt and insecurity. Just have faith that you are going in the right direction and someday soon you will see small improvements turn into big improvements and maybe you will eventually forget how bad you once felt. I feel like I am halfway there.

DianaMReid Newbie
DianaMReid
Posted

I have just been gluten free for a little more than a month, finding out I had celiac disease was a shock. I am glad I found this forum and know that there are folks having the same issues and feelings that I am experiencing. I also have become very depressed and just tired when I get home from work. I keep thinking my energy level will improve but it has not with being gluten-free, like everyone says it will. Again,I am thankful that this medium exists and I am sure will be adding posts and questions now.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

give it time. it took 9-12 months for me to feel, like, normal on a regular basis

except now i'm sick from some kind of contamination a few days ago, yaaaaaaaay (not)

luckily each new exposure doesn't set you back for years since the reaction is proportional to the exposure

cheers and feel well ok

Lisa Mentor
Lisa
Posted

Great comments!

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. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
    3. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was...
    4. Amy Barnett
      - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

      What is the best liquid multivitamin for celiac disease?
    5. Scott Adams
      0

      Quick Gluten-Free Shrimp Stir-Fry With Crisp Vegetables

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      Curious question

      By Jmartes71 · Posted

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      Question

      By Amy Barnett · Posted

      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      Alarming

      By Jmartes71 · Posted

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.