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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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