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

A Little Confused


hungrygirl

Recommended Posts

hungrygirl Newbie

Hi everyone,

I hope you can give me some advice.

I was diagnosed with Celiac last year, kind of by mistake. I was sick from something else, and when the doctors were trying to find out what was going on, they discovered a slight reaction to gliadin.

I had the celiac panel done and an endoscopy..they were both my choice, as I was told to try gluten free and see if it made a difference.

Before this I had no issues with food whatsoever. I didn't get pain, I didn't have any trouble eating anything at all. I was

completely surprised.

My blood test showed positive, but only barely, the numbers were just over the cut off ranges.

My biopsy was negative and my doctor took multiple pieces.

I was later diagnosed with lyme disease and I think whatever problems I was having were due to that.

I've been gluten free but haven't noticed any difference that could tell me that I had had some problems from it before.

I've even been lazy about being careful and eaten things that I shouldn't and had no reaction at all.

My GI doctor recently told me that I may be latent celiac and I could try eating gluten and she would continue to

test me and see if anything shows up.

I've been told to stay away from so many foods, which I did, but now when I try them I have no problems at all.

Could it be that I may not have celiac, but could develop it?

I want to try and eat some but I'm scared after all I've read on line.

Being gluten free has made no difference to me as far as I can tell.

If I felt better I wouldn't be questioning it.

What do you all think?


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



Celiac.com Sponsor (A8-M):



Tallforagirl Rookie
Hi everyone,

I hope you can give me some advice.

I was diagnosed with Celiac last year, kind of by mistake. I was sick from something else, and when the doctors were trying to find out what was going on, they discovered a slight reaction to gliadin.

I had the celiac panel done and an endoscopy..they were both my choice, as I was told to try gluten free and see if it made a difference.

Before this I had no issues with food whatsoever. I didn't get pain, I didn't have any trouble eating anything at all. I was

completely surprised.

My blood test showed positive, but only barely, the numbers were just over the cut off ranges.

My biopsy was negative and my doctor took multiple pieces.

Which tests did you have exactly? The anti-endomysial antibody test (EMA) is very specific for celiac disease, almost 100 per cent. The tTG (tissue transglutaminase) is the next most specific but can be false-positive if other autoimmune disease is present. Anti-gliadin tests are much less specific and are falling out of favour for diagnosis of celiac disease.

If you had a positive EMA it could be that the biopsy was misread. You could ask for it to be re-examined by a specialist.

If you were diagnosed on the basis of a positive anti-gliadin test alone, and have no symptoms, it could be a false positive, but if you're going back on gluten you may want to retest in a couple of years just to be on safe side.

When I was first tested for celiac disease the blood tests were positive (don't have numbers) but biopsy negative. I stayed on gluten and I went on to develop "full blown" celiac disease with all tests positive, including an EMA.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,996
    • Most Online (within 30 mins)
      7,748

    Sasha Bondarev
    Newest Member
    Sasha Bondarev
    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
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
×
×
  • 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.