Just Tested For Celiac Disease...

[jajus100]

Hi,

I went to the doctor with some gastro-intestingal issues. I have also been really tired lately. I also have problems with my thyroid that require Synthroid. Anyway, she is testing me for Celiac disease. I have never heard of it before. I have been reading everything on all the various sites since yesterday. I certainly don't have any of the extreme symptoms that I see by so many on the site.

One question is kind of nagging at me. My understanding based on what I am reading is that people with Celiac have an "immune" response to the gluten. The body attacks the gluten which in turn hurts the villi in the small intestine. Hopefully, that is right so far. Okay, then I am reading that even the tiniest amount of gluten can hurt you. People are talking about breathing in the flour or even licking an envelope. On the other hand, people are saying you need to eat at least 2 pieces of bread a day to get a positive on the test. So my question, is if that small amount is enough to have your body react to the gluten, why does the test require so much? I'm confused by that.

[bluelotus]

Probably b/c the tests aren't sensitive enough to small amounts of gluten in your system - this will likely cause a smaller immune system reaction (though maybe not less symptoms on your part). That's my understanding anyway.....hope its correct and I don't end up confusing anyone.

[nettiebeads]

Hi,

I went to the doctor with some gastro-intestingal issues.  I have also been really tired lately.  I also have problems with my thyroid that require Synthroid.  Anyway, she is testing me for Celiac disease.  I have never heard of it before.  I have been reading everything on all the various sites since yesterday.  I certainly don't have any of the extreme symptoms that I see by so many on the site. 

No, you don't have to have any extreme symptoms for it to be celiac disease. Some people can be asymptomatic and still have celiac disease. There are about 200 symptoms and all of them can appear at different levels - very mild to severe. I think you are blessed to have a dr. who went straight to the not-so-mainstream dx of IBS. When will you be tested? and when will you have the results?

[KaitiUSA]

First, some people get no symptoms as stated in a previous post. Celiac can not be determined at all by that. The smallest bit will damage you...symptoms vary but damage will come no matter what when we have gluten-in all of us.

You need to be consuming alot of gluten to make sure the test comes back accurate. When you do not consume the gluten your body starts to heal and then the antibodies start to diminish....they use the blood tests to monitor compliance with the diet.

The more gluten you have the more damage you do. With biopsies it is already a hit or miss of whether it would come back positive. You see a biopsy can rule in celiac but it can't rule it out with a negative one. Reason is the intestines are huge and the doctor only gets certain places looked at so if there is sporadic damage then they can miss it. Also, if celiac is in beginning stages and there is not damage yet then it can also come out negative.

[Carriefaith]

When a person has celiac... any amount of gluten can cause intestinal damage and the person does not necessarily have to have symptoms or a "reaction" to get intestinal damage. When you start on a gluten free diet or if you're eating very low amounts of gluten, the number of antibodies to gluten in your blood would start to go down. This would mean that a blood test may come back false negative. In order to get an accurate blood test, the person must have been comsuming lots of gluten for several months prior to the test. For example... I had a positive blood test and biopsy about 1.5 years ago, if I had those tests today they would be negative. However, if decided to eat something with gluten in it today (which I would never do btw ) the tests MAY still be negative, but if I continued to eat gluten for a whole month or even a week then the tests would most likely be posistive. *Also, eating small frequent amounts of gluten overtime would eventually produce antibodies and cause intestinal damage. I hope that made sence

In any case, a person on the diet with celiac disease must be 100% gluten free to prevent damage.

[skoki-mom]

Honestly, I don't know, but I was told to keep eating "normally" while waiting for my scope. I don't have any physical symptoms, (I had + bloodwork), so I called it my farewell tour and visited all my favourite restaraunts and ate all my favourite gluten loaded foods. I figured if I was going down, may as well go down in flames!! No really, indeterminate or borderline results are terribly frustrating, and unlike so many here, I wasn't suffering at all.

Needless to say the biopsy was totally conclusive that I have celiac disease, so I'm sorta glad I had warning and had a chance to eat some of that stuff one last time.

[2Boys4Me]

if you're eating very low amounts of gluten, the number of antibodies to gluten in your blood would start to go down. This would mean that a blood test may come back false negative. In order to get an accurate blood test, the person must have been comsuming lots of gluten for several months prior to the test. For example... I had a positive blood test and biopsy about 1.5 years ago, if I had those tests today they would be negative. However, if decided to eat something with gluten in it today (which I would never do btw  ) the tests MAY still be negative, but if I continued to eat gluten for a whole month or even a week then the tests would most likely be posistive. *Also, eating small frequent amounts of gluten overtime would eventually produce antibodies and cause intestinal damage. I hope that made sence 

In any case, a person on the diet with celiac disease must be 100% gluten free to prevent damage.

<{POST_SNAPBACK}>

I'm trying to get this clear in my mind. If you are NOT consuming gluten, you do not produce the antibodies that are attacking your intestine. If you are diligent and the villi heal and then for some reason you consume a small amount of gluten perhaps from cross contamination, or just an accident, will the intestine get damaged from that trace amount, or will you just get your symptoms? Are the symptoms indications that your intestines are being damaged?

Like SkokiMom, my son has no obvious symptoms except he's a bit underweight. My concern is that if he gets a trace amount from whatever source he will not heal or will do more damage. He is the only gluten-free person in the house (so far), all his meals are gluten-free, and the rest of us have gluten-free suppers, but our breakfast and lunches have gluten, if it is a weekend our lunch and supper are both gluten-free.

CarrieFaith, you have concerns about a mixed kitchen even though you said your Mom is VERY careful. Is it doable, how do I really know what's happening to my son if he has no outward symptoms. He's grown 1 cm and gained 1/2 kg (1 lb) in the month since he's been on the diet. I think the doctor at the followup expected more of a weight gain, but that might be genetic in that he has two slim parents.

Sometimes I think we're doing great and then I get more confused than ever.

[KaitiUSA]

If you are diligent and the villi heal and then for some reason you consume a small amount of gluten perhaps from cross contamination, or just an accident, will the intestine get damaged from that trace amount, or will you just get your symptoms? Are the symptoms indications that your intestines are being damaged?

Symptoms do not necessarily say damage. Some people never get symptoms with celiac but do alot of damage.

If your villi heal and then you have a gluten accident the intestines then get damage to them..whether you have symptoms or not the tiniest bit can cause damage.

[ravenwoodglass]

I'm trying to get this clear in my mind. If you are NOT consuming gluten, you do not produce the antibodies that are attacking your intestine. If you are diligent and the villi heal and then for some reason you consume a small amount of gluten perhaps from cross contamination, or just an accident, will the intestine get damaged from that trace amount, or will you just get your symptoms? Are the symptoms indications that your intestines are being damaged?

Like SkokiMom, my son has no obvious symptoms except he's a bit underweight. My concern is that if he gets a trace amount from whatever source he will not heal or will do more damage. He is the only gluten-free person in the house (so far), all his meals are gluten-free, and the rest of us have gluten-free suppers, but our breakfast and lunches have gluten, if it is a weekend our lunch and supper are both gluten-free.

CarrieFaith, you have concerns about a mixed kitchen even though you said your Mom is VERY careful. Is it doable, how do I really know what's happening to my son if he has no outward symptoms. He's grown 1 cm and gained 1/2 kg (1 lb) in the month since he's been on the diet. I think the doctor at the followup expected more of a weight gain, but that might be genetic in that he has two slim parents.

Sometimes I think we're doing great and then I get more confused than ever.

<{POST_SNAPBACK}>

It is likely that after he has been gluten-free for a while the symptoms will become more obvious. The most obvious for my son is moodiness, he will be very hyper and cranky for a day or so then become very depressed. You may notice he is clumsier when he becomes glutened. He may have trouble sleeping or want to sleep too much. And he may start to show more obvious symptoms of tummy upset. All these can become clues for you. The less gluten in the house the better but if he has his own toaster and you use paper towels to wipe things down and don't grill on the same grill that will help. Be aware also, if you are not already that glues, pastes, paints and clays can be sources of contamination. Get him in the habit of washing his hands in school alot. You will do fine I am sure. Get him involved in prepareing and shopping for his food and be glad they discovered it early.