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

Newly Diagnosed

Bastet

Recommended Posts

Bastet Newbie
Bastet
Posted

I am so glad I found this forum! I have been reading for about a week or so and finally joined.

I was diagnosed with Celiac disease on May 12. I am a little confused.

I have always had a "bad" stomach. Years ago I was diagnosed with gastritis found during an edoscopy. I learned to avoid things that gave me a stomach ache and got along pretty well. The weird thing is that my "go to" foods during attacks were plain pasta and white bread. I never noticed any symptoms from eating those things.

Fast forward to the end of January 2009.... I had a horrible stomach attack. The pain was intense, but got better after vomiting. The odd thing was that I threw up food that I had eaten the day before. I was actually crying and moaning from the pain at my Doc's office. He sent me to the emergency room. They found nothing wrong and sent me home after some morphine. I figured it was a fluke and went on with my life.

A month later...another attack with the pain and vomiting plus diarrhea. I did not bother with the emergency room this time. I just went to my regular Doc the next day. He referred me to a GI Doc. He set me up to have an EGD and colonoscopy right away. I am a cancer survivor. I was sure the tests would show radiation damage or something. Nope! Everything was good except my small intestine. The biopsy showed Celiac disease.

I have been on the Gluten free diet ever since (after one last binge at Applebee's on May 12). Anyway, I don't feel much different on the gluten-free diet. My husband says my anxiety has gotten much better. Who knew that my horrible anxiety could be caused by something like gluten?

Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted
Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

Symptoms vary, but endoscopic biopsy is the gold standard of Celiac Diagnosis. If you have eaten gluten your whole life it stands to reason that it will take time for your body to heal. I'm just over a few months gluten-free after nearly 44 years of gluten. I see some improvement, but not much yet...the bloating has improved. About 3 weeks to a month in I became very frustrated but read many posts that indicated the younger the person at diagnosis the quicker the recovery...I'm still hopeful for more improvement as the weeks go on.

Here is a great youtube of a video produced at UCSD's Celiac Center. It is long (over an hour) but helpful.

Open Original Shared Link

Welcome!

FMcGee Explorer
FMcGee
Posted

I've only been gluten-free four days longer than you (I also had the blood test and endoscopy come back positive) and don't feel miraculously better overnight, either. A lot of people do, according to what they've posted on the internet, but I don't. I, too, have felt my anxiety decrease, and the bloating has gone down a little bit, but I'm waiting for that energy bounce-back and for my stomach to quit being annoying. Yesterday I resolved to be patient; this is easier said than done. Keep in touch, and here's hoping we both get that recovery we keep hearing about soon!

ang1e0251 Contributor
ang1e0251
Posted

Remember each person's symptoms are unique. Don't expect there to be a certain set of symptoms that everyone should have identically. That's why so many of us go years without dx, our dr's think each person with celiac disease should look and act the same. Some have no symptoms but still are having their insides waste away.

You do have some symptoms and those are your indicators. You may retain those same ones over time or become more sensitive and have other feelings. This disease just isn't cut and dry.

As far as the energy boost, you could try the sublingual B12. It really boosted my energy and brain power too.

Bastet Newbie
Bastet
Posted
  • Author

Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Tra cy Newbie
Tra cy
Posted
Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Well said...bloating and brain fog!!! 4 weeks gluten-free and 3 episodes. I am assuming I am still learning to watch ingredients carefully.

It is not worth taking chances because I loose a whole day.

Tra cy

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.