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

Do I Have The Symptoms For Celiac

PamS

Recommended Posts

PamS Newbie
PamS
Posted

Hello,

I am new to your forum and I have been reading as much as I can to try and understand the symptoms that I have. Im hoping a little more help from the forum can lead me to think I might have Celiac. I will try to explain my situation without rambling to much.

My life changed for the worse right after I found out I was pregnant. That was almost 19 years ago. I have 2 children my son who is 18 and my daughter who is 15. No sooner did I find out that I was pregnant I had morning sickness all day and all night long for 6 and half months of my pregnacy. I could not eat, and I lived on liquid gravel 24/7 just to try to stop that constant sick feeling. I threw up so much that only bile was coming up most of the time and I even burned the back of my throat with so much acid coming up. Right after I started to feel better I was diagnose with gestational diabetes.(However during my second pregancy I was just as sick, I did not have the gestational diabetes). My delivery was horrible as I should of had a C section. (I am 5 foot 2 and I weigh 100lbs when I got pregnant). Both kids were well over 8lbs and healthy. Few weeks after having my son, thats when everything started to happen. I was doubled over in pain because my colon was spasming (so they said) I had diarrhea all the time. I went and saw a specialist who did a colonoscpy, put me on a high fat diet and did a bowel test. They came back with IBS. So I went with that. I would not eat if we went out on day trips. I would not go anywhere if there wasn't a bathroom. I would get all nervous and anxious if I did not see a washroom near by. I lived on imodium. Imodium was my friend who gave me piece of mind. Now that I have lived with this for so long, things have changed some what. For the past 10years or so, my worst time is in the morning now. It starts right after I eat my breakfast. Sometime it can be diarrhea, or just soft loose bowel movments. I usually go 3x in the morning. Cramps, and no way I can hold it. If I need to make plans to go somewhere early in the morning, you will have to give me at least 3hrs to allow my stomach to empty. Sometime the cramps are bad that my stomach feels tired afterwards. Like you've over done exercise. But mostly it just feels heavy. If I have lingering cramps afterwards, I will take imodium. For some reason imodium makes my stomach feel like it has no issues at all. I however try not to use it to much anymore. Sometimes I have cramps and they feel like menstrual cramps. It really sucks cause I can't work outside of my home town and I will not make any plans in the morning, because we won't get there on time. I am tired all the time. and when I eat, my stomach bloats, I can look pregnant again. I was schedule for a physical, so I thought I would mention all that has been going on because I am 42yrs old and I want to enjoy my life and beable to do things in the morning with my friends and family. I fast before my blood test as it was my physical and she decided to test for Celiac disease. That test came back negative, but I my B12 was low so now I am taking supplement for that. She also put me on a probiotic to see if that will make a differnce(been on it for 2wk and I haven't notice a differnce). I don't like to drink dairy products, the only dairy product I will have is cream in my coffee, or cheese on my pizza or burger. I just bought a home celiac test kit to try and see what results that will bring me. They told me it would be 99% accurate. I am not schedule to see my doctor again until next month to go over the test results etc. Im not sure what to think. I want it to be something, so I can try and live a happier life.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

You could do a gluten free diet and then challenge by eating gluten. That completely did it for me. I was sick as a dog on any tiny amount of gluten so I didn't challenge it for long. It is sometimes very clear after you eliminate it. All of your symptoms are consistent with Celiac. I had the same long terribly ill pregnancies too for what it is worth. My kids were 9 lbs. and 8 lbs. I did have C-sections but remianed terribly ill for the first year of their lives and moderately ill for the rest of the years. I'm 48...gluten free one year and living my life for the first time ever. If you can't get a diagnosis...just do the diet and take back your life.

PamS Newbie
PamS
Posted
  • Author

You could do a gluten free diet and then challenge by eating gluten. That completely did it for me. I was sick as a dog on any tiny amount of gluten so I didn't challenge it for long. It is sometimes very clear after you eliminate it. All of your symptoms are consistent with Celiac. I had the same long terribly ill pregnancies too for what it is worth. My kids were 9 lbs. and 8 lbs. I did have C-sections but remianed terribly ill for the first year of their lives and moderately ill for the rest of the years. I'm 48...gluten free one year and living my life for the first time ever. If you can't get a diagnosis...just do the diet and take back your life.

Thanks for your reply. That's what I am planning on doing after I see the Doctor again. I need to do something, because I am so unhappy on missing out on so many things. Even a business trip was so hard on me, that I said I would not go again. I am an identical twin and she has no health issues at all, but my Aunt on my mom side was just diagnose with Celiac..

kendon0015 Rookie
kendon0015
Posted

Have you had a stool test? I just had one after 9 months of misery (needed to know where every bathroom was) and found out that I have a C diff infection. Seems that your problems started when in the hospital as many of those infections start. A blood test is not enough, please get checked for bacterial and/or parasitic infections...and don't wait any longer.

AVR1962 Collaborator
AVR1962
Posted

You could go off gluten as an experiment to see if it makes a difference. This is what I did, and in 3 weeks I knew. I then went off dairy and found it too was giving me issues. So definatley no harm done by going off and just seeing what happens.

If you decide to test, or doc wants you to test, you will have to be on gluten....docs vary on time, mine said 2 months. Testing is not real accurate so it boils down to doing what is best for you.

PamS Newbie
PamS
Posted
  • Author

You could go off gluten as an experiment to see if it makes a difference. This is what I did, and in 3 weeks I knew. I then went off dairy and found it too was giving me issues. So definatley no harm done by going off and just seeing what happens.

If you decide to test, or doc wants you to test, you will have to be on gluten....docs vary on time, mine said 2 months. Testing is not real accurate so it boils down to doing what is best for you.

Thanks everyone!. I really enjoy reading everything about this site. It helps to know that your not alone in all this, though it really seems like I am.

I will be waiting first before I stop all gluten until I see the Doctor again. I did the celiac home test and it came back negative too. My Doctor has done a stool test as well. We will see what that comes back with. Im tired of it all. Im tired of being tired and being judged all the time because people don't understand.

Thanks to everyone for listening :)

PamS Newbie
PamS
Posted
  • Author

You could go off gluten as an experiment to see if it makes a difference. This is what I did, and in 3 weeks I knew. I then went off dairy and found it too was giving me issues. So definatley no harm done by going off and just seeing what happens.

If you decide to test, or doc wants you to test, you will have to be on gluten....docs vary on time, mine said 2 months. Testing is not real accurate so it boils down to doing what is best for you.

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

Celiac.com Sponsor (A8-M):


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.