Two Questions From A Newbie

[Meggie]

Hi Folks

I'm so pleased to have found this site, I've been googling and googling for weeks trying to work out if I might have this.

I've been sick for so long, increasingly so for at least the past 8 years maybe longer, not sure....

Anyway, I wont bore you all with my long list of strange symptoms, but I'm just wondering if a chronic sore throat could be related to celiac's or am I clutching at straws? All my other symptoms seem to be celiac related, except I can't find anything about a constant sore throat... I went off gluten for a week and the throat was nearly all better, and then have had to go back on gluten ready for upcoming blood test, and in less than two days I had bad belly ache, and sore throat, which is now really bad, plus laboured breathing.

The other thing I wanted to know is if I'd been eating gluten my whole life and then went off it for a week to see how I felt, and then wanted to be tested (the blood tests), if going back on gluten (high gluten)for a week, would be enough to make sure the relevant 'stuff' would be there in my blood? If not how long do you think i should wait before being tested?

Thank you very much in advance

Meg

[darlindeb25]

For starters, 1 week off gluten is not enough time for healing to take place, 1 week should not effect the blood test at all.

One thing you will find after reading in these forums, is that everyone has similiar symptoms, and everyone will have some symptoms that others may not. A chronic sore throat could be from GERD, and sometimes people do have silent GERD. I get a sore throat every day at work from the dry air.

Intolerance's cause all kinds of symptoms. I recently went dairy free, after a year and a half of weird symptoms from dairy products. One day after I went dairy free, my insomnia went away, insomnia that I have been suffering from for 30 years. Does everyone get insomnia when they are dairy intolerant...nope.

If you felt better in just one week, then definitely go gluten free, no matter how the tests come back. Gluten free will not hurt you, and it may make you feel much better. You can't just go a little gluten free though, you have to go completely gluten free to be sure it helps. Of course, you may want to have an endoscopy done, you will have to continue to eat gluten until this test has been done, but the one week experiment will not effect this either.

[Meggie]

For starters, 1 week off gluten is not enough time for healing to take place, 1 week should not effect the blood test at all.

One thing you will find after reading in these forums, is that everyone has similiar symptoms, and everyone will have some symptoms that others may not. A chronic sore throat could be from GERD, and sometimes people do have silent GERD. I get a sore throat every day at work from the dry air.

Intolerance's cause all kinds of symptoms. I recently went dairy free, after a year and a half of weird symptoms from dairy products. One day after I went dairy free, my insomnia went away, insomnia that I have been suffering from for 30 years. Does everyone get insomnia when they are dairy intolerant...nope.

If you felt better in just one week, then definitely go gluten free, no matter how the tests come back. Gluten free will not hurt you, and it may make you feel much better. You can't just go a little gluten free though, you have to go completely gluten free to be sure it helps. Of course, you may want to have an endoscopy done, you will have to continue to eat gluten until this test has been done, but the one week experiment will not effect this either.

OK, thanks Deb, I might go and have the blood test tomorrow then. I've been eating gluten two meals a day for the past three days, anyway, after only the week off, so I'm going to do it tomorrow.

From what others are saying, it's coming across as though the blood tests can come back as a false negative, is this true. I just see that some are getting negative or low results from the blood test, but are still opting for the biopsy. Do you or anyone else know why this is, or what the story is there?

I guess I'm just wondering approximately how accurate the blood test is?

[captaincrab55]

I had bad belly ache, and sore throat, which is now really bad, plus laboured breathing.

I thought bad belly aches were just a way of life for some people (my mom suffered with all of her life).. Sore throats caused by sinus became a regular event every 3 or 4 months to visit the Doc for antibiotics. Every now and then I had a breathing problem, but it would go away as soon as I stopped the different meds I was taking to prevent the sore throat / sinus problem

[darlindeb25]

From what others are saying, it's coming across as though the blood tests can come back as a false negative, is this true. I just see that some are getting negative or low results from the blood test, but are still opting for the biopsy. Do you or anyone else know why this is, or what the story is there?

Yes, it is possible to get a false negative, doesn't always happen though. It's the best test to do first, then go from there. People get false negatives from the biospy too. Depends on the doctor doing the testing, how much he actually knows about villi, if he knows what he is looking at, if he actually gets samples from the right spot, if he takes more than one sample...so many varitables. Some doctors have no idea what flatten villi look like, and they will tell a person they are fine, when they aren't. Dr. Green told us about a patient whom had 5 endoscopies done, and each time his doctor told him everything looked good...Dr. Green reviewed each test results, and the flatten villi was there the entire time, over 5 years of testing.

This is why, after many have exhausted all the testing, and are given negative results, they still go gluten free, and do get better. To be honest, they do not know enough about gluten intolerance, havent come up with a good way for testing yet. Celiac disease is a very small section of gluten intolerance, and they just do not know how to test yet for the full encompass of gluten intolerance.

[Lisa]

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There are also several conditions which may yield false negative antibody results. A false negative means that the patient actually has the disease, but the test result is negative. One of the conditions that may give a false negative result is Immunoglobulin A or IgA deficiency. If a patient has a low total IgA level, the antibodies may be falsely low. This is why I always recommend that a patient have a total IgA level drawn at the same time the antibody testing is done. Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results. An inexperienced lab can misread the anti-endomysial IgA test, which requires someone to read a slide through a special microscope. It is possible that a celiac patient could have a positive antibody test at one lab, and a negative test at another. This is because different labs may use different commercial test kits, which vary in their sensitivity and specificity. And lastly, a person has to be ingesting gluten at the time the antibodies are drawn. A gluten-free diet will make the antibody tests negative.

[Meggie]

Thanks for sharing that info, it's really very interesting isn't it...

That poor person who went for 5 biopsy's, good on them for persevering, they must have had a strong conviction.

Alright, well I guess I'll see how the blood's go and take it from there.

If it all comes back negative, I'll ask my Naturopath to do some allergy testing and good sensitivity testing then.