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

New Member

pixiegirl

By pixiegirl
in Coping with Celiac Disease

Recommended Posts

pixiegirl Enthusiast
pixiegirl
Posted

I just wanted to say hi. I'm sure you all have stories to tell in getting diagnosed and here is mine. I've had stomach problems and diarrhea for 8 years. I've seen my doctor a few times for them and first it was a lactose intolerance (which I'm not sure I have) and then he finally decided I have ibs. Two weeks ago he ran some blood tests for celiac and they came back "normal" and he said I don't have it. However..... when he mentioned that we were testing for celiac disease I went on the internet and read about it and immediately went gluten-free.

By the time the tests came back all my symptoms were gone, no diarrhea, no noisy stomach, and I'm eating milk products with no symptoms (which is why I don't think I'm lactose intolerant). When I told my doctor this he said, go back on gluten products it has nothing to do with it. Well, two days ago I mistakenly ate a little bit of gluten and my belly was all upset again (along with other symptoms).

I'm going to get some further testing at that Entrolab in Tx. and see what they can tell me but for now this is where I stand, my Dr. won't even give me a referral to another doctor (i'm in an HMO and can't see anyone with his referral) as he said based on this one blood test, that I'm fine and that its in my head. (wrong end!)

Its frustrating but I know that the gluten is not working for me.

I'm a single mom on Cape Cod (not a lot of doctors) and I just thought I'd say hi and that I look forward to learning a lot more about this.

Susan

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted
:D welcome susan------your story sounds so much like so many others of us--i too was told IBS, spastic colin and the best one--too much stress and to keep the stress away :blink: only an idiot would say something that stupid-----anyways--i went almost 20 years before finding out about celiacs and i do not need a doctor to tell me that gluten is my problem and a gluten free diet can not hurt you, especially when we know the gluten does--once again, welcome :D and feel free to email me at my aol addy if you want---deb ;)
stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hello Susan,

my tests were negativ, because i did the same thing you did. I made research and found out about celiac disease and started to cut out the gluten in my food. When the doctor wanted to make some blood tests i told him, that i'm worried, that the blood tests wont show anything, because i already started the glutenfree diet. He replied, no, that should be ok. Well, of course the blood tests were negativ then. But i feel perfect when i eat glutenfree. And he said, well, that's pretty strange, but when i feel better with glutenfree food i should just go on eating that and come back in about 3 month. And he said, if i'm feeling better after eating glutenfree food, that's as good as a diagnosis in his eyes. And that was it. I feel so much better since i'm on a glutenfree diet, that i never want go back to eat gluten again. I cut the gluten out since July this year. But i would like to make this test in Texas too.

I think, you don't need positiv tests to know, that you feel better on a glutenfree diet.

That is just my opinion here. Lots of greetings, Stef

Guest barbara3675
Guest barbara3675
Posted

Hey there pixiegirl......a similar story here, negative blood test, so I did the complete test with Enterolab including gene testing. Came back gluten and casein intolerant and I had been eating gluten-free already. They are wonderful. The test in non-invasive and the results came back in less than two weeks although they ask you to be patient for 3-4 weeks. I was very pleased with Enterolab. They send you the results via email. My granddaughter who is now 6 has had celiac disease for 5 years and we always wondered where she got it from as it is highly heriditery...now we know. I am feeling much better too, although I wanted going gluten-free to cure my fibromyalgia and it hasn't done that yet. Darn. Best wishes, do the Enterolab thing for sure. Barbara

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

I'll start by welcoming you to the forum!! There is a great bunch of people here who are really supportive, knowledgeable, and helpful......

My story is a bit different from yours, my bloodwork and biopsy showed without a doubt that I had celiac, but from all the posts I have read here, it is not uncommon at all that the bloodwork came back negative. I would also recommend to you that you to the Enterlab testing, I have heard nothing but wonderful things about them....

Good Luck and Welcome!

Karen

flagbabyds Collaborator
flagbabyds
Posted

Welcome@!!!

This is a great message board and it is really hard for me to do my HW when I am posting on this board. LOL wow if you have any questions you can e-mail me, i have been living with celiac disease for 13 years, all my life

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. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease...
    2. Jordan Carlson
      - Jordan Carlson posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fruits & Veggies

      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine...
    3. wellthatsfun
      - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free...
    4. Tanisha L
      - Tanisha L commented on Scott Adams's article in Kids and Celiac Disease
      1

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

      I am a 47yr old African American woman and did not receive a celiac diagnosis until 2yrs ago. This late diagnosis proved to be challenging to me because it was a culture shock to me. I have a cultural background of Hispanic and West Indian and a lot of our foods are heavy flour based. I was told be my dietician that unfortunately African American families...
    5. knitty kitty
      - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

      That test is saying that your daughter is not making normal amounts of any IGA antibodies. She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses. She is deficient in total IGA, so the test for antigliadin antibodies is not valid. The test was a failure. The test only works if all different kinds of antibodies...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,997
    • Most Online (within 30 mins)
      7,748
    IwannabHealthy
    Newest Member
    IwannabHealthy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Help understand results

      By trents · Posted

      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Fruits & Veggies

      By Jordan Carlson · Posted

      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      heaps of hope!

      By wellthatsfun · Posted

      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
×
×
  • 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.