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Am I Just Grabbing At Strings?
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7 posts in this topic

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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    • I_would_widen_the_search_to_your_whole_environment.....Carefully_consider_what_else_was_different_when_you_felt_better.
    • Thanks a lot for your advice and the link. I will surely check upon GCED. But, doesn't a negative HTTG (can't do IgA ttg as IgA deficiency) result mean that I am not exposed to gluten ? 
    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
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