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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • 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.
×
×
  • 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.