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

Is It Worth Getting Tested For The Official Diagnosis

lynne1978

Recommended Posts

lynne1978 Rookie
lynne1978
Posted

Please help...

I have always had digestional problems, since I can remember, and I have always felt 'ill'. I used to get so upset and think that noone should feel that ill constantly unless was something drastically wrong with them.

I have had blood tests done for everything imaginable, and the tests for coeliacs always come back negative. I have tried wheat free a few times and felt so much better it was unreal, and then started to eat it again, gradually feling worse and worse every time with severe stomach cramps and bed ridden for at least a day.

My symptoms:

Stomach cramping 30 mins after eating bread/cake/etc

hard swollen very distended painful stomach

itchy skin (no rash, but so itchy) on knees, behind ears, back of thighs

excema on face and in hair/ behind ears

extreme headaches

foggy brain

no concentration

I went completely gluten free a few weeks ago, feeling on top of the world, started gradually eating normally again, and went to the doctor with hard swollen stomach, (who tested me for pregnancy... ) and he referred me to a specialist. They took bloods and I am going to have a gastroscopy and possibly biopsy and have been told to eat at least 2-3 slices of bread a day in order to test. I have been eating for 5 days now, had to leave work today as so ill, and spent the afternoon in bed.

Is it worth getting the tests done for an absolute diagnosis, can the doctor diagnose on just the challenge tests? what are the chances of a positive biopsy if i stop eating it now? Anyone else feel like this, and if they have chosen to not get the tests, what do you tell people if you do not have the official verdict? (family wont beleive things unless told properly by a doctor..)

I'd really appreciate other peoples opinions on this and any advice/suggestions for coping with this!!!

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

Celiac.com Sponsor (A8-M):


brendygirl Community Regular
brendygirl
Posted

Keep it up, you can do it!

Think of it this way, which might you regret: getting tested or not getting tested?

I doubt you would regret getting tested.

It's rough, though. I know.

My doctor took me off gluten for months then had me eat some for a week and did the blood test, which was "inconclusive". I had elevated levels of that igA or whatever it is but not enough for a firm diagnosis. I said, what else would cause the levels to be elevated? He said nothing else.

Grrr...

ALSO: Now I can pre-tax the cost differential between gluten free foods and regular foods by enrolling in a 125 plan at work. So, I NEED my doctor (a new one) to write a letter saying I require gluten free food.

An "official" dx can help with that for you, if you can do it, too. Food is expensive!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,998
    • Most Online (within 30 mins)
      7,748
    Wendy Jo
    Newest Member
    Wendy Jo
    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
      Chances of being coeliac

      By trents · Posted

      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      TTG IgA reference range 0.0 to 14.9 KU/L
    • trents
      Chances of being coeliac

      By trents · Posted

      What was the reference range for that test? Each lab uses different reference ranges so a raw score like that makes it difficult to comment on. But it looks like a rather large number.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      I have had the tTG-IgA blood test my result are >250.0  I am waiting for the appointment with the gastroenterologist for endoscopy and biopsies.    what are the chances it’s not coeliacs.  waiting and not knowing is so hard. Especially the eating of gluten knowing it may be causing you more harm and coping with the symptoms. 
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      @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?
×
×
  • 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.