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Dazed And Confused

ohsroac

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ohsroac Apprentice
ohsroac
Posted

I will try to keep this short, I am new to this cite and new to Celiac Disease, I have never even heard of it before! I have IBS and have had hives for 2 years. My doctor said I have an auto-immune disorder and my sed rate has been high and he does not know what it could be.

Meanwhile; my daughter (15)has been having stomach pains so 2 hospital visits and a meeting with a GI she thinks she is Celiac. She had one biopsy that came back with reddness in her dudenomum (spelling unsure) and her lycocytes were high. Her blood test for Celiac was Weakly positive.. what does that mean anyway????????? And we are waiting for results form her 2 biopsy. I still dont' know why she had 2 biopsies done??? The 2nd one still showed signs of reddness..

My son who is 9 has always had gas, and symptoms of IBS..

Could it be that we are all Celiac? Or am I just thinking and thinking and overthinking? I am going crazy..

Again what is a Weak positive? Is she or isn't she? So confussing!

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mushroom Proficient
mushroom
Posted
I will try to keep this short, I am new to this cite and new to Celiac Disease, I have never even heard of it before! I have IBS and have had hives for 2 years. My doctor said I have an auto-immune disorder and my sed rate has been high and he does not know what it could be.

Meanwhile; my daughter (15)has been having stomach pains so 2 hospital visits and a meeting with a GI she thinks she is Celiac. She had one biopsy that came back with reddness in her dudenomum (spelling unsure) and her lycocytes were high. Her blood test for Celiac was Weakly positive.. what does that mean anyway????????? And we are waiting for results form her 2 biopsy. I still dont' know why she had 2 biopsies done??? The 2nd one still showed signs of reddness..

My son who is 9 has always had gas, and symptoms of IBS..

Could it be that we are all Celiac? Or am I just thinking and thinking and overthinking? I am going crazy..

Again what is a Weak positive? Is she or isn't she? So confussing!

Since genetics are involved in celiac disease, it is certainly possible you could all have it. If your daughter has it (discussed below) then she had to have gotten a gene from either you or her father as I understand it (no genetic expert here! although there are others here who will answer)

No wonder you are confused about a "weak positive". You would need to get a copy of the results with the lab's ranges and post them here so that members can look at them for an informed comment. It could mean that some results were at the upper end of normal, or some doctors will say something like that if only one of the tests is out of range. Doctors are loath to make the diagnosis of celiac unless they are hit over the head with it. For an endoscopy to be *positive* the reading has to be a Marsh III (on a scale of 1-4) before it is positive. That is, you have to have done major damage to your small intestine. My husband was diagnosed as "borderline" celiac by blood test and ignored it. When I went gluten free he did too, and what an improvement he saw. And when he cheated he broke out in DH, which confirms he is a celiac.

In other words, there are degrees of antibodies (which are what the blood tests measure) and of intestinal damage, and I would seriously consider going gluten free with a "weak positive" and "redness". and high sed rate for your daughter, and symptoms for you and your son. That after all is the ultimate test. If for all of you your symptoms go away or greatly improve, you are probably all celiacs. But the important thing is not the diagnosis itself but feeling better, from my point of view (undiagnosed). Others feel that they must have the diagnosis.

elye Community Regular
elye
Posted

Hi, ohsroac, and welcome!

You are not overthinking. :)

You are either celiac or you are not - - it is like being a little pregnant. A "weak" positive is a positive, and false positives are almost unheard of, unlike false negatives, which are not uncommon.

Celiac disease and gluten intolerance are often misdiagnosed as IBS, which is only a collection of symptoms the cause of which is not known (read: gluten). Your hives could be dermatitis herpetiformis, the skin condition that occurs only with celiac disease and is, it seems, chronically misdiagnosed as hives, excema, acne, you name it.

This condition is genetic. Those who are diagnosed should urge all family members to be tested, and all their children should have testing done. I cannot offhand recall the chances of a celiac's family member(s) also being afflicted - - (20%?) - - but it is significant.

ohsroac Apprentice
ohsroac
Posted
  • Author

Thank you so much for your reply! Her Tga I think thats what is was, was 1.20 on a scale of 1>2 being a weak positive.

I might have jumped-the-gun and started our new diet without getting her second biopsy result in but I did'nt care. As her mom I was feeling horrible, I mean what if I am feeding her foods that are killing her? I can't do it.. So until I know for sure, we are going gluten free.... It can't hurt us, right? ohhhh I hate wating for results to come in...

Thanks,

Lena

Since genetics are involved in celiac disease, it is certainly possible you could all have it. If your daughter has it (discussed below) then she had to have gotten a gene from either you or her father as I understand it (no genetic expert here! although there are others here who will answer)

No wonder you are confused about a "weak positive". You would need to get a copy of the results with the lab's ranges and post them here so that members can look at them for an informed comment. It could mean that some results were at the upper end of normal, or some doctors will say something like that if only one of the tests is out of range. Doctors are loath to make the diagnosis of celiac unless they are hit over the head with it. For an endoscopy to be *positive* the reading has to be a Marsh III (on a scale of 1-4) before it is positive. That is, you have to have done major damage to your small intestine. My husband was diagnosed as "borderline" celiac by blood test and ignored it. When I went gluten free he did too, and what an improvement he saw. And when he cheated he broke out in DH, which confirms he is a celiac.

In other words, there are degrees of antibodies (which are what the blood tests measure) and of intestinal damage, and I would seriously consider going gluten free with a "weak positive" and "redness". and high sed rate for your daughter, and symptoms for you and your son. That after all is the ultimate test. If for all of you your symptoms go away or greatly improve, you are probably all celiacs. But the important thing is not the diagnosis itself but feeling better, from my point of view (undiagnosed). Others feel that they must have the diagnosis.

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