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

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

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

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

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

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

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

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.

  • 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. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    3. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,257
    • Most Online (within 30 mins)
      7,748

    Gabs
    Newest Member
    Gabs
    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

    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
×
×
  • 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.