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Confused And A Bit Scared
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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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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 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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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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    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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