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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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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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