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Am I Just Grabbing At Strings?

mars817

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mars817 Rookie
mars817
Posted

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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AandGsmomma Apprentice
AandGsmomma
Posted

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.

Takala Enthusiast
Takala
Posted

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.

mars817 Rookie
mars817
Posted
  • Author

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?

1desperateladysaved Proficient
1desperateladysaved
Posted

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

ScottR13 Newbie
ScottR13
Posted

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 ... Open Original Shared Link

Here's another link from another Lab with 2 very good videos @ the bottom of the page... Open Original Shared Link

GFinDC Veteran
GFinDC
Posted

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.

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

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