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How Were You Diagnosed?


Guest BERNESES

How were you diagnosed?  

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

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Guest BERNESES

1. Bloodwork

2. Biopsy

3. Gene test

4. Positive response to diet only


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elonwy Enthusiast

1. Positive Bloodwork

2. Inconclusive Biopsy

3. No gene test

4. Positive dietary response

Guest BERNESES

Just curious. Thanks everyone, B

gf4life Enthusiast

The poll isn't working, so I'll just post:

1 Negative blookwork

2 Negative biopsy

3 Positive gene test

4 Positive dietary response

I also was positive on the Enterolab stool tests. I had been gluten free before the blood tests and biopsy and don't think they were accurate. Not to mention that I get severely ill for weeks following accidental gluten exposure!

CMCM Rising Star
1. Bloodwork

2. Biopsy

3. Gene test

4. Positive response to diet only

1. Very positive response to diet.

2. Stool test

3. Gene test

KaitiUSA Enthusiast

1.Positive Blood Work

2.Positive Gene Test(DQ2)

3.Positive Response to Diet

carriecraig Enthusiast

Positive bloodwork

Positive biopsy


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Canadian Karen Community Regular

Positive bloodwork followed by positive biopsy

Karen

dlp252 Apprentice

I didn't actually vote using the buttons, because I don't seem to fit the categories, lol.

I was actually "diagnosed" by Enterlab as Gluten Intolerant and Casein Intolerant. I have seen positive response to the diet and have one of the main genes predisposing one to Celiac (along with any number of stressful events in recent years to act as a trigger), so I have put the pieces together myself.

jenvan Collaborator

positive bloodwork, positive biopsy

2Boys4Me Enthusiast

My son was diagnosed by positive bloodwork and positive biopsy.

I cannot say that there has been a positive dietary response. He has gained 2 lbs in the last five months and seems a bit happier, but certainly still has crazy mood swings (occasionally brought on by having a big brother who likes to push his buttons). He had no "obvious" symptoms from consuming gluten. He was only tested for Celiac because of low iron levels, and the liquid iron wasn't really bringing his levels up. He is the only one in our immediate family with Celiac, and of our extended family only my Mom was tested, and she doesn't have it either.

codetalker Contributor

Biopsy and positive response to a gluten-free diet when I was a baby. Then at about age 4, the doctors thought I had outgrown it so they put me back on a regular diet. For the next 35 years, no one ever told me I had been DX'd with celiac disease.

In my 40's, I finally figured out what celiac disease was and started the diet on my own. Don't know if that counts as a second DX or not.

Guest BERNESES

Thanks for all your responses. Don't know why I can't figure out the new poll function. Best, B

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    • trents
      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
      TTG IgA reference range 0.0 to 14.9 KU/L
    • trents
      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
      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
      @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?
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