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 replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    2. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    4. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    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
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
×
×
  • 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.