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. hjayne19
      - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

      Hi all, Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was...
    2. yellowstone
      - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive...
    3. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily...
    4. Wheatwacked
      - Wheatwacked replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have...
    5. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      Thanks for your input.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,069
    • Most Online (within 30 mins)
      7,748
    danichristine
    Newest Member
    danichristine
    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

    • hjayne19
      Celiac Screening

      By hjayne19 · Posted

      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning?

      By yellowstone · Posted

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
    • Wheatwacked
      Celiac disease symptoms

      By Wheatwacked · Posted

      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have you been supplementing Iron? How are your liver enzymes? Low levels of ferritin indicate iron deficiency, while  59% transferrin saturation indicates high iron levels.  Possibly indicating Fatty Liver Disease.  Choline is crucial for liver health, and deficiency is a known trigger for Non-Alcoholic Fatty Liver.  Some experts say that less than 10% eat the the Food and Nutrition Board established Adequate Intake that are based on the prevention of liver damage. Severe constipation and hemorrhoids may be linked to a bile or choline deficiency.  "Ninety-five percent of phospholipids (PLs) in bile is secreted as phosphatidylcholine or lecithin."  Fatty acid composition of phospholipids in bile in man   Deficiency of these bile salts causes the bile to get thick. Some people with Celiac Disease are misdiagnosed with Gall Bladder bile issues.  Removal of the gallbladder provides only temporary relief. Whether or not celiac disease or NCGS are your issues you need to look at your vitamin D blood level.   
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      Thanks for your input. 
×
×
  • 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.