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Confused And A Bit Scared


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#1 j9n

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Posted 18 February 2004 - 05:38 PM

Had my visit with my GI today after doing the celiac panel. He said it was inconclusive so endoscopy is scheduled on March 18th. I have just started having dizzy spells and what he called "flushing". I am also being tested for carcinoids. He said my symptoms seems severe enough that my test results should have been higher for celiac. Right now I am praying for celiac. I guess I am hoping someone else has had these symptoms as well without the dreaded "c word". I have been avoiding gluten for a couple of months, though not strictly so I am hoping that is what caused the lower levels of antibodies. I am going to eat normally until the test (hopefully without missing too much work)
Janine
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#2 seeking_wholeness

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Posted 19 February 2004 - 07:34 AM

Janine,

Antibody levels DO NOT correlate to severity of symptoms, or even severity of damage, so don't let your doctor's comment compound your worries! (And I'm sure Mariann can corroborate this, after all her struggles to get a diagnosis!) Being on a reduced-gluten diet does allow antibody levels to drop and may be responsible for your inconclusive test results. It's certainly a good idea to be checked for cancer as well, but I don't believe that cancer is the only thing that could be causing your symptoms. It could still be celiac disease (or gluten intolerance, if you or your doctor prefers that term for cases with "less severe" damage). I hope the biopsy conclusively proves that you DO have celiac disease, since it CAN'T conclusively prove that you DON'T (no matter what the doctors say)! Good luck!
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Sarah
gluten-free since November 1, 2003

#3 gf4life

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Posted 19 February 2004 - 08:52 AM

Sarah is right. Conventional mediacal tests for Celiac Disease cannot rule out celiac disease. They can only confirm it 100% or tell you that you might not have it, but they can't ever say that you don't have it with 100% certainty! Although most doctors will say that they believe the tests, don't be fooled. This is a quote from my Enterolab diagnosis. Their tests are much more sensitive for picking up gluten intolerance. They call it gluten sensitivity, but it is the same thing.

*  Many people assume that a lower positive antigliadin antibody value may not be as significant as a higher positive value and inquire how their antibody result compares to the range of potential measurable values. It seems they ask this question to determine how severely they are reacting to gluten and hence, whether or not they need to be fully strict and compliant with a gluten-free diet.  Actually, this is not the case.  People with low-positive antigliadin antibody values can suffer the same health consequences as those with values of 100, 200, or higher. An analogy would be trying to use the level of antibodies to penicillin in a person who has had an allergic reaction to penicillin to determine if it is safe to take penicillin again. This obviously is not done because those with demonstrated penicillin allergy can not take penicillin without the risk of suffering severe health consequences. Although gluten sensitivity is not a true allergy like penicillin allergy, the concept is the same.  Thus, any positive antibody value to a food substance indicates that the immune system considers it foreign-enough to make antibodies against it (as if it is an infection), and continued consumption can have adverse consequences on your health. If you already have any symptoms or syndromes associated with gluten or other food sensitivities, and especially if you have intestinal malabsorption, damage to the body is already occurring and a strict gluten-free diet is imperative. If you do not have malabsorption or such symptoms/syndromes, consider yourself fortunate and strictly follow a gluten-free diet to prevent them.


This is true for me. I tested negative on all the conventional tests, and low positives on the Enterolab tests. But a low positive is still a positive. I have suffered from symptoms for over 25 years and they have gotten quite severe over the last 10 years, and most currently the past two years have been the worst. There seems to be a subsection of gluten intolerant people that never seem to produce higher levels of antibodies in their blood, yet their symptoms are quite severe.

I hope you figure out what is wrong. Celiac Disease is the elusive diagnosis that many of us never get, yet if you are in fact gluten intolerant, the longer you stay on gluten the more long term health problems you will develop. You may have to make the decision yourself, or go for alternate testing with a private lab like Enterolab .

God bless,
Mariann :)
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#4 j9n

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Posted 19 February 2004 - 10:48 AM

Wow, thanks so much. I feel much better. I ate a sandwich last night and oh did I suffer! Bloated up so much I thought I would explode. I am really starting to see a pattern with the gluten ingestion and symptoms. I am going to see my GP for the dizzy spells, I wonder if it is caused by an ear infection which makes me nervous and intensifies my symptoms. I am trying to be positive and eat well. Four more weeks of this and I hope I can start healing.
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