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

Hello All-New To This

kami42

By kami42
in Introduce Yourself / Share Stuff

Recommended Posts

kami42 Newbie
kami42
Posted

Hi Everyone! Just wanted to say hi and introduce myself. My name is Kelly, I am a 24 year old female. After years of multiple health issues and no diagnosis, I was compelled to research my every last symptom to see what was making me feel as if I was literally falling apart. My doctor kept telling me that all of my tests were normal and that she didn't understand why I had so many health problems for being a fit 24 year old female. I felt like a hypochondriac! I still had so many symptoms that I knew to go with my gut- I couldn't focus, headaches, no memory or mental focus "brain fog", anxiety, depression, bloating, always dizzy, fatigues as well as extreme eczema, a swollen inguinal lymph node (for years), irregular periods, constipation and hypertension to name a few. I have been on a gluten-free diet for a week now and already feel so much better. My skin looks brighter, my dark circles under my eyes have gone away, my eyes aren't red anymore, no more aching neck muscles, no more bloating, my lymph node is completely GONE. The one thing that helped me link the possibility of being gluten sensitive is my hidradenitis suppurativa. There's a link between the HS and gluten intolerance however after this week of going gluten-free the HS is almost GONE. I have not been diagnosed yet (my doctor retired) so I am going to look for a new doctor to help me determine if any damage was done during that time and to get an official diagnosis. As I read other's stories...I can relate so much...we are all in this together. It's true that I never realized how bloated and uncomfortable I was until I tried the gluten-free pizza at my favorite local pizza place. I was actually full without being swollen and so tired that I could pass out/throw up! I tried a piece of bread last night to test my theory and I feel miserable today- headache, red eyes, achey....etc :( I do know one thing- I will never eat gluten again! This is such a wonderful community from what I have read and experienced so far and I am so happy to not be in this alone. I am just looking for people to talk to and to help make my day to day life a little easier. I am always here to talk to if I can show any kind of support. I just want to talk to someone who understands!! Thanks for listening :)

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

Wow! Welcome and I want to tell you your perseverance paid off. You are not a hypochondriac. I was in the same medical boat and it sunk. I was stuck in this limbo of Fobromyalgia, depression and weakness for years until I refused to leave the computer until I figured it out. It took a long time...due to brain fog. But I found this place and I am now one year gluten free and feeling great. Unless of course I get any traces of gluten. I've learned to be very careful. I am so happy for you that you are going to get to feel better now! And you are right this is an amazing informative site and no, you are not alone. Welcome to the rest of your life! I'm much older than you are and I get really happy when someone your age figures this out and saves themseves from a long debilitating journey. I know you have already been through a lot...but you have a lot of life to live and it is going to be so wonderful to feel healthy and well for it too! Happy for you!

kami42 Newbie
kami42
Posted
  • Author

Thank you so much for your support. My dad and Aunt have alot of symptoms: anemia, graves disease, IBS, low calcium, arthritis, fybromyalgia, diabetes, pancreatic cancer. (to name a few). I know it is hereditary so I am suggesting that they go gluten-free or even get tested to see if that might be the case. I have also noticed my eyes get red when I first get glutened and then a headache/muscle soreness the next day and horrible bloating on day 2 (today). Do you ever experience anything like that? Is there anything known to help reduce the effects of being glutened? Probiotics maybe? I am so happy that I am not the only one who experienced the brain fog although I am sorry you had to go through that! It was the most horrible feeling ever along with the depression as you expreienced as well! I already feel so much better mentally despite eating that bread to test my theory but I do feel it physically as I said. That is amazing that you sat down on the computer and researched and researched...we have to be our own advocates. It seems we are alot alike :) I am so looking forward to this new journey and getting to know all the others that are fighting this battle!

frieze Community Regular
frieze
Posted

Thank you so much for your support. My dad and Aunt have alot of symptoms: anemia, graves disease, IBS, low calcium, arthritis, fybromyalgia, diabetes, pancreatic cancer. (to name a few). I know it is hereditary so I am suggesting that they go gluten-free or even get tested to see if that might be the case. I have also noticed my eyes get red when I first get glutened and then a headache/muscle soreness the next day and horrible bloating on day 2 (today). Do you ever experience anything like that? Is there anything known to help reduce the effects of being glutened? Probiotics maybe? I am so happy that I am not the only one who experienced the brain fog although I am sorry you had to go through that! It was the most horrible feeling ever along with the depression as you expreienced as well! I already feel so much better mentally despite eating that bread to test my theory but I do feel it physically as I said. That is amazing that you sat down on the computer and researched and researched...we have to be our own advocates. It seems we are alot alike :) I am so looking forward to this new journey and getting to know all the others that are fighting this battle!

Unfortunately, if you want traditional testing, you need to be eating gluten to get it done.

kami42 Newbie
kami42
Posted
  • Author

Hi! Thanks so much for your reply, Frieze! I agree. My dad and aunt are eating gluten but I am not. I had such a horrible reaction this last week that I do not ever want to eat it again..I should post a pic I looked pregnant because I was so swollen in my lower abdomen and it hurt. I don't mind not getting tested per se but it would be nice to have a diagnosis so people do not think I am being a drama queen. However, if I am going to have to go through that much pain again then forget it. I am still suffering from the last exposure. Is there anything you can take to lessen the severity of getting glutened?

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.