Jump to content
  • Sign Up

Rate this topic

Recommended Posts

Our doctor diagnosed my 15 month daughter over the phone with celiac disease about 2 1/2 weeks ago and also sand that since she had a few gritty diapers that there was probably intestinal damage. They wanted to do a colonoscopy, but it had to wait since we don't have health insurance. Well yesterday I went to change her diaper and there were what looked like coffee grounds in it and since my grandmother always told me that black means blood I called the doctor. They ended up having me take her right to the ER and her diaper tested positive for blood. Since it was not a large amount they sent her home with directions to follow up on Monday and come back if it gets worse. They say that it is probably intestinal bleeding, but they do not know what it is from. Could the intestinal bleeding be from the damage from celiac disease? And does anyone know what they would do, I know it has to be taken care of right away, but I need to have an idea on how much we may be talking price wise...I just want to be prepared. Thank you in advance.

Share this post


Link to post
Share on other sites

Is your daughter on a gluten free diet? I'm not sure I understand how she would be diagnosed over the phone. My son had bloodwork done and then, based on that and symptoms, he had an endo which confirmed villa damage, which is kind of the golden rule for diagnosing celiac disease these days. celiac disease damages the small intestine, among other things, so I would imagine intestinal bleeding could be a result of celiac disease. I'm no doctor, but here's what I would do. If you feel comfortable that she has celiac disease, I would just put her on a gluten-free diet and stick with it. If she continues to have these bad reactions, then it's probably not celiac disease.

Our doctor diagnosed my 15 month daughter over the phone with celiac disease about 2 1/2 weeks ago and also sand that since she had a few gritty diapers that there was probably intestinal damage. They wanted to do a colonoscopy, but it had to wait since we don't have health insurance. Well yesterday I went to change her diaper and there were what looked like coffee grounds in it and since my grandmother always told me that black means blood I called the doctor. They ended up having me take her right to the ER and her diaper tested positive for blood. Since it was not a large amount they sent her home with directions to follow up on Monday and come back if it gets worse. They say that it is probably intestinal bleeding, but they do not know what it is from. Could the intestinal bleeding be from the damage from celiac disease? And does anyone know what they would do, I know it has to be taken care of right away, but I need to have an idea on how much we may be talking price wise...I just want to be prepared. Thank you in advance.

Share this post


Link to post
Share on other sites

Is your daughter on a gluten free diet? I'm not sure I understand how she would be diagnosed over the phone. My son had bloodwork done and then, based on that and symptoms, he had an endo which confirmed villa damage, which is kind of the golden rule for diagnosing celiac disease these days. celiac disease damages the small intestine, among other things, so I would imagine intestinal bleeding could be a result of celiac disease. I'm no doctor, but here's what I would do. If you feel comfortable that she has celiac disease, I would just put her on a gluten-free diet and stick with it. If she continues to have these bad reactions, then it's probably not celiac disease.

She has been on a gluten free diet for about 2 1/2 weeks now. The ER doc was saying that it was damage that was already done. She was diagnosed over the phone based on symptoms. Our doctor refuses to do tests on either of us because of the rates of false negatives and because of the cost.

Share this post


Link to post
Share on other sites

I used to have black stool and bleeding before going on the gluten-free diet. Celiac does destroy the lining of the small intestine, so its no surprise if it causes bleeding. A positive response to the diet is a better test than any test a doctor can give you, no matter how much it costs. If it makes you sick don't eat it. Your body doesn't care about test results, it reacts to real life.

A dairy intolerance is also fairly common with celiac disease due to damage to the villi of the small intestine. The villi produce an enzyme called lactase that digests the sugar (lactose) in dairy. So, damaged villi equals no or low lactase production. That's why many celiacs have problems with dairy. After being on the gluten-free diet for a while some people regain the ability to eat dairy but not all do.

It is helpful to start the gluten-free diet by eating whole foods and avoiding processed foods. It also helps to cut out dairy and soy at first. Many of us have problems with soy also, although not all do.

There is lots of great information on this board, so stick around and read and ask questions. Since the tendency to develop celiac is genetic, it is good to have your immediate relatives tested for antibodies to gluten. Gene testing is ok, but there are lots more people with the genes than there are people with celiac. Not everyone with the genes develops it.

The typical tests the docs do are blood antibodies first, and then a biopsy of the small intestine via endoscopy. But if your body is already doing better being off gluten, the tests are not nessecarily going to tell you anything you don't already know.

I think it is better to start the diet myself, and do a good strict job of it too. No cheating, watch out for cross-contamination, no sharing of peanut butter jars etc with gluten eaters, no processed foods, no dairy, and no soy, no oats. If it doesn't help after a month or two, then it would be good to think about further tests. But the only treatment for celiac disease is the gluten-free diet. Some people do get vitamin shots, but most can get by without them. Sub-lingual B-12 is often used at first.

Make sure to check all your vitamins and meds and drinks for gluten also.

Share this post


Link to post
Share on other sites

I used to have black stool and bleeding before going on the gluten-free diet. Celiac does destroy the lining of the small intestine, so its no surprise if it causes bleeding. A positive response to the diet is a better test than any test a doctor can give you, no matter how much it costs. If it makes you sick don't eat it. Your body doesn't care about test results, it reacts to real life.

A dairy intolerance is also fairly common with celiac disease due to damage to the villi of the small intestine. The villi produce an enzyme called lactase that digests the sugar (lactose) in dairy. So, damaged villi equals no or low lactase production. That's why many celiacs have problems with dairy. After being on the gluten-free diet for a while some people regain the ability to eat dairy but not all do.

It is helpful to start the gluten-free diet by eating whole foods and avoiding processed foods. It also helps to cut out dairy and soy at first. Many of us have problems with soy also, although not all do.

There is lots of great information on this board, so stick around and read and ask questions. Since the tendency to develop celiac is genetic, it is good to have your immediate relatives tested for antibodies to gluten. Gene testing is ok, but there are lots more people with the genes than there are people with celiac. Not everyone with the genes develops it.

The typical tests the docs do are blood antibodies first, and then a biopsy of the small intestine via endoscopy. But if your body is already doing better being off gluten, the tests are not nessecarily going to tell you anything you don't already know.

I think it is better to start the diet myself, and do a good strict job of it too. No cheating, watch out for cross-contamination, no sharing of peanut butter jars etc with gluten eaters, no processed foods, no dairy, and no soy, no oats. If it doesn't help after a month or two, then it would be good to think about further tests. But the only treatment for celiac disease is the gluten-free diet. Some people do get vitamin shots, but most can get by without them. Sub-lingual B-12 is often used at first.

Make sure to check all your vitamins and meds and drinks for gluten also.

Thank you so much for the information. I will definitely check all her vitamins and drinks too. And I will cut out dairy and soy to see if that helps. Again thank you.

Share this post


Link to post
Share on other sites

Hi Alex,

I hope your little girl is feeling better, but if not I think you need to ensure she sees a Pediatric Gastroenterologist. Bleeding could be indicative of something other than Celiac. She could have Ulcerative Colitis or something else (the root cause could be Celiac however). If it is Ulcerative Colitis it needs to be brought under control. I agree with others that have written to ensure she is gluten, dairy and possibily soy free for awhile.

Good luck,

Monica

Share this post


Link to post
Share on other sites

Hi Alex,

I hope your little girl is feeling better, but if not I think you need to ensure she sees a Pediatric Gastroenterologist. Bleeding could be indicative of something other than Celiac. She could have Ulcerative Colitis or something else (the root cause could be Celiac however). If it is Ulcerative Colitis it needs to be brought under control. I agree with others that have written to ensure she is gluten, dairy and possibily soy free for awhile.

Good luck,

Monica

Thank you. She has a doctors appointment today and the ER doctor was mentioning possibly sending her to a pediatric GI. I will definitely push for it though. Thank you again.

Share this post


Link to post
Share on other sites

We took her to the doctor earlier in the week and they told us to call a pediatric GI. I called the name they gave me and they told me to take her to a children's hospital since she would be able to get all her care in one place and they could work with us financially. Another thing the doctor said was to cut common allergens out of her diet and the list included....the gluten (of course), dairy, eggs, soy, peanuts, tree nuts, citrus fruits, fish, shellfish, nitrates, artificial coloring and dyes and preservatives. So she is on a fairly strict diet while we wait for the hospital visit. She is still having old blood in all her runny stools and she goes 5-8 times a day. If it gets worse I am just going to take her back to the ER. Thank you for all your tips.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×