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Has Anyone Had Their Tests Come Back This Way?


rgeelan

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rgeelan Apprentice

Ok I was just curious if anyone else had only the TTG come back positive and not the other tests? The TTG was what was positive in my son and that is why the doctors are pretty sure he at least is a carrier of celiac disease if he hasn't fully developed it. But I am just curious if anyone else has had this come back like this before?

Also I was wondering when they started to diagnose celiac disease? Cause in talking with my mother she said my father had problems that he was hospitalized for as a teenager and they diagnosed it as something else called Gaisbock's syndrome. "A condition in which the blood thickens because it contains too many red blood cells and too little clear fluid (plasma). It most often develops in middle-age men who smoke, have high blood pressure and take diuretics" This is a definition from the internet. Well his symptomsw were what i have read as common misdiagonses of celiac disease and he had a lot of digestive problems and bleeding ulcers and things like that... The problem is that he died 20 years ago and there isn't anyone alive in his family I could ask about this... I am just wondering if he could have had celiac disease and been misdiagnosed and that is where it came into our family.

I am sure I put this in the wrong area but I didn't know where else to put it since it is our son who has been diagnosed so far...


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tarnalberry Community Regular

It was identified over a hundred years ago, but it seems that the US is WAY behind the curve in accurately diagnosing people. They tested back then, but almost exclusively in failure-to-thrive infants, and even then patients were never told it was a life long thing. Only in the past 5-10 years, since the advent of blood tests, has there been an improvement in this.

One of the doctors I have, who is well known internationally in his specialty (so other doctors don't actually think he's some sort of quack), has noted that he's talked to other doctors about a dietary link to the condition-spectrum he specializes in. Many of them just shrug it off as him being a Californian, and thinking that many of our health problems can be - at least in part - attributed to diet. Uh.... Yeah... The two of us had a good chuckle at that little anecdote. :-)

rgeelan Apprentice

lol about the diet bit...

thanks for the info. I am curious if my father could have had it... he seemed to have a lot of the problems it causes... and i do to...

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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. 
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      @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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