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Confusion About Silent Celiac

mhb
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mhb Apprentice
mhb
Posted

Hi, I am gluten-free for a little over a week. While feeling better overall, my bloating (main symptom) still kicks in, possibly due to other sensitivities I am trying to identify.

Somewhere i got the understanding that some people have silent celiac (no observable villi damage), but I also got the notion that some people react to gluten and are not *any* form of celiac (incl. being without the same medical risks and malabsorption, and not really an immune response). Is this right, or is it true that if you respond well to gluten-free diet you are definitely celiac, whether silent or not?

TIA

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Tim-n-VA Contributor
Tim-n-VA
Posted
Somewhere i got the understanding that some people have silent celiac (no observable villi damage), but I also got the notion that some people react to gluten and are not *any* form of celiac (incl. being without the same medical risks and malabsorption, and not really an immune response).

That is correct. There are non-Celiac reactions to gluten. To add to the confusion Celiac and non-Celiac reactions to gluten can happend at the same time. Specifically people can have Celiac and be allergic to a gluten-conatining grain.

Lux Explorer
Lux
Posted

I am what you have referred to as a 'Silent Coeliac'. This means that, despite receiving positive blood results, I am lacking in visible villi damage, ordinarily required to recieve 'official diagnosis'. In saying that, many on this board will tell you that such tests are unreliable, and it is very common to receive false negatives when having such tests administered. My thinking is that it doesn't really matter either way; so long as you react to gluten, you react to gluten, and you know it cannot be good for you. I will not touch it with a ten foot pole ;-) Anyway, I never really differentiate between the two - nor do I use that term when explaining to anyone what is 'wrong' with me...I am always willing to discuss Coeliac with anyone - and have never experienced anything but support (alongside a little pity, which I can deal with even if I don't want or need it) when I do bring it up...but it just tends to complicate matters when you go into the details of being 'silent' or whatever. As far as I'm concerned, if you get sick, you get sick...sorry for that ramble! *sheepish smile*

Tim-n-VA Contributor
Tim-n-VA
Posted

I had no significant symptoms when I ate gluten. However, routine liver function tests that my doctor ordered showed a lot of fluctuation. That lead to a GI doctor ordering a series of screening tests to eliminate things that could cause the symptoms. Net effect was positive blood test and positive biopsy.

That is what I thought was meant by silent celiac - having the disease and the internal damage - without external symptoms.

In retrospect the occasional nausea that I had was probably an external symptom but nothing like the exteme or even mild symptoms many describe.

darlindeb25 Collaborator
darlindeb25
Posted

There is so much confusion about silent and latent celiac. A silent celiac is someone who does have damage, but no other symptoms. The villi does show damage, yet the patient doesn't know they are sick, a silent celiac is usually diagnosed by accident. A latent celiac is the one who has no visible damage yet. Here is an article I found from medicinenet for you to review.

http://www.medicinenet.com/celiac_disease/page5.htm

What is latent and silent celiac disease?

The terms latent and silent celiac disease are used to refer to patients who have inherited the genes that predispose them to celiac disease but have not yet developed the symptoms or signs of celiac disease.

Latent celiac disease refers specifically to patients who have abnormal antibody blood tests for celiac disease (see discussion of specific tests for celiac disease) but who have normal small intestines and no signs or symptoms of celiac disease. For example:

Some patients may have had a childhood onset of celiac disease and the disease may have been successfully treated with a gluten-free diet. The patients' intestines may have resumed a normal appearance and function, and they may have no signs or symptoms of celiac disease.

Some patients with celiac disease in childhood abandon the gluten free diet as adults, yet they remain free of the signs or symptoms of celiac disease.

In both of the above instances, the celiac disease is latent, and the patients can develop signs and symptoms of celiac disease later in life.

Silent celiac disease refers to patients who have abnormal antibody blood tests for celiac disease as well as loss of villi in the small intestine but have no symptoms or signs of celiac disease, even on a normal diet that contains gluten. Like patients with latent celiac disease, these patients can develop signs or symptoms of celiac disease later in life.

Lux Explorer
Lux
Posted

Ah, in which case Iwould appear to be a Latent Coeliac...I see. Doctors. I have definitely had symptoms, so that rules Silent out! (Always thought it funny that something so horrendously...not silent would have such a label attached to it!) ;-)

  • 10 years later...
Blvr Rookie
Blvr
Posted

I have silent Celiac disease.  My small intestine biopsy was positive as well as all my blood tests.  I had no symptoms except anemia which has been treated with iron supplements and now is normal.  I would like to hear from others who have no pain. This makes it very difficult to be gluten free.

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