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Am I Just Grabbing At Strings?
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My husband told me last night that he thinks I'm grabbing on this celiacs because I want an answer but he doesn't think I have it and am grasping at straws. No he is not a jerk really (most of the time anyway:). He even was the one who brought up the idea of celiacs again after seeing show about it and thinking I do have all the symptoms. My brother has it, and I've been tested twice, both times my blood work was negative, I need to find it and can post, because I don't know if my overall numbers were low but I think the positive is greater than 20 and mine was 2.

I also had a endo/colon and my dr took 1 sample and it came back fine. So I had two tests that were negative.

I did the enterolabs and those came back positive but our dr says they are not something he believies. I do have one of the celiacs genes though.

So I guess I need a reality check..if my blood work was so negative, my intestines look good should I get off thinking I have celiacs? What else could cause all the symptoms I have (anemia (severe), gastrointestinal problems, hair loss, joint pain, numb/tingly arms, etc...)? I am having a pill cam endoscopy later this week because my doctor thinks my anemia is caused by a bleed that he couldn't find during the endo/colon, maybe that will shed more light on the matter. I know the other things they are thinking for the anemia is a bone marrow issue :/

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One sample from an endoscopy isnt enough. Depending on your total IGA number you may never test positive but that doesnt mean you dont have it. Do a strict gluten free diet for two months and keep track of your symptoms. If you need a test, try gluten again after 2 months and you will know right away if your right.

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If you have a first degree relative (such as your brother or parent) with celiac, that means your risk for developing it is MUCH higher.

If you have the genes for celiac, that means you're also much more likely to have it.

If you have the symptoms, and the first degree relative with it, and the genes, and the doctor is still saying you don't have it, well, after he/she is done picking your insurance and wasting your time and health, then go on a gluten free diet. Don't cheat. Do it right. If you feel better, then gluten IS your problem.

There is such a thing as non- celiac gluten sensitivity, where the tests don't show positive, but the person does have a gluten problem which responds positively to diet change. The leading celiac/gluten intolerant medical researchers on this think that up to 7% of the population could fall into this category.

Tests can be negative for various reasons.

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There is such a thing as non- celiac gluten sensitivity, where the tests don't show positive, but the person does have a gluten problem which responds positively to diet change. The leading celiac/gluten intolerant medical researchers on this think that up to 7% of the population could fall into this category.

Tests can be negative for various reasons.

From what I can read though it seems like non celiac gluten sensitivity wouldn't cause anemia. Is that true or could it still cause anemia?

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I hope you will get better. I hope you will get support. I am sorry you have to go through this. I think it is more than a string you are grabbing at, but even if it isn't you need to improve your health. What else can one do when you aren't up to par? I hope you will get accurate results with future tests will be helpful. Let us know how the cam endoscopy comes out. Also, if you do try the gluten free diet let us know how the symptoms are helped or not helped.

Diana

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My husband told me last night that he thinks I'm grabbing on this celiacs because I want an answer but he doesn't think I have it and am grasping at straws. No he is not a jerk really (most of the time anyway:). He even was the one who brought up the idea of celiacs again after seeing show about it and thinking I do have all the symptoms. My brother has it, and I've been tested twice, both times my blood work was negative, I need to find it and can post, because I don't know if my overall numbers were low but I think the positive is greater than 20 and mine was 2.

I also had a endo/colon and my dr took 1 sample and it came back fine. So I had two tests that were negative.

I did the enterolabs and those came back positive but our dr says they are not something he believies. I do have one of the celiacs genes though.

So I guess I need a reality check..if my blood work was so negative, my intestines look good should I get off thinking I have celiacs? What else could cause all the symptoms I have (anemia (severe), gastrointestinal problems, hair loss, joint pain, numb/tingly arms, etc...)? I am having a pill cam endoscopy later this week because my doctor thinks my anemia is caused by a bleed that he couldn't find during the endo/colon, maybe that will shed more light on the matter. I know the other things they are thinking for the anemia is a bone marrow issue :/

Reading that a relative has Celiac, there's a great chance you have a Gluten Allergy. With a Gluten Allergy, you can have all the same symptoms as Celiacs except for the damaged Villa (which is, in part, how they diagnose Celiacs).

I have a Gluten Allergy & here's a link to the tests I had done ... http://www.questdiagnostics.com/testcenter/testMenuSearch.action?keyword=Wheat+IgG&totalResultCount=0&currentResultsetStart=0&results=&submitValue=Search

Here's another link from another Lab with 2 very good videos @ the bottom of the page... http://www.greatplainslaboratory.com/home/eng/food_allergy_igg.asp

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Hi Mars,

There is also something called non-celiac wheat sensitivity. The article linked explains a study that was done to document it's existence. If you have that condition, you won't get a positive on celiac disease tests. The immune system response is called an innate response, but the normal celiac tests do not detect that. But you can have similar symptoms as a person with celiac. This is new research that does confirm the existence of the condition. Since it is a newly identified condition, there aren't any tests being done by mainstream doctors for it right now. There may be tests devised in the future though. They seem to have identified 2 versions of this condition, not just one.

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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