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My 10 y.o. son had an endoscopy Dec. 30; they called us (the peds GI is 2 hours away) to say that it confirmed the dx and we should schedule a follow-up visit. I got a copy of the report and since then have wondered if this is standard operating procedure? Shouldn't someone have explained the whole results? His "follow-up" is scheduled for JUNE. The lab report makes me wonder if he is too sick to recover on his own just by being gluten-free-- "acute cryptitis and abscess", to the best we've been able to determine, aren't good things at all. He's been gluten-free for 3 weeks and has yet to "turn the corner" so to speak.
6 replies to this topic
#2
Guest_jhmom_*
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Posted 17 January 2004 - 08:32 PM
I don't know what the standard procedure is but I know when I had mine done, I called the doctors office and spoke with his nurse within a few days. She could not tell me too much and scheduled an apt to see the doctor, but I only had to wait a couple of days, not months!!!!
I would call his doctor and demand an apt next week, let them know he does not seem to be improving on the gluten-free diet. I know for me I have been gluten-free for 4 months and still have some lingering symptoms. Sometimes it takes longer than 3 weeks to see an improvement. I sure hope he feels better soon!
Don't worry, just keep doing what you are doing and I am sure he will begin to feel better soon!
I would call his doctor and demand an apt next week, let them know he does not seem to be improving on the gluten-free diet. I know for me I have been gluten-free for 4 months and still have some lingering symptoms. Sometimes it takes longer than 3 weeks to see an improvement. I sure hope he feels better soon!
I am not sure what this means, maybe some of the more experienced Celiac's can answer this one."acute cryptitis and abscess",
Don't worry, just keep doing what you are doing and I am sure he will begin to feel better soon!
#3
gf4life
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Our family "photo" as drawn by my daughter Hannah
Posted 20 January 2004 - 09:03 AM
ryebaby0,
I would push for an earlier appointment date as well. There are some tests they can do on your son to look for specific deficiencies, like iron, B vitamins, calcium, and more. Then he could take specific supplements for these until he started healing more.
Also, if he is still on dairy products this could delay his healing, since the first part of the villi to be damaged is the tip and that is where lactase is produced. If the damage is bad it will be a while before he could digest dairy properly and it will cause his healing to be delayed. So you should probably have him totally dairy free for a few weeks and then slowly add a bit of lactose free products until he is healed (which can take up to a year or two, but many show drastic relief of symptoms within a few months).
I hope this helps a bit, and I am glad that you know what is wrong with your son. It can be frustrating to have a child with an illness and not know what is wrong. Now it is within your power to help him achieve health! This is good, but it can be a very stressful time with so much to learn. Try not to be too hard on yourself if mistakes happen. They happen to all of us, even to people who have been gluten free for years! It would be good if you can get your son involved in the shopping and meal preparation. This will help him tremendously, since he will be a teenager in a few years and will need to know how to shop and prepare his own foods.
A great book to read, if you haven't already is Danna Korn's book, "Wheat Free, Worry Free". She also has a book about raising Celiac Children called, "Kid's with Celiac Disease". You might also want to see if there is a local chapter of a ROCK (Raising Our Celiac Kids) support group. getting together with other families of celiacs can really help a lot.
I hope you can get your son in earlier than June, but the fact is that many doctors don't know much about the gluten free diet. They give the diagnosis (and you are luck to have that, many never get that far!) and then the docotr sends you on your way, and you are on your own with this new way of eating and living! It might help to consult a nutritionalist or a dietician, but even some of them are not trained in a gluten free diet. If you live in or near a large city, you will probably have more resources available to you.
Well, I'm sorry for rambling on so much. I hope I helped a bit.
God bless,
Mariann
I would push for an earlier appointment date as well. There are some tests they can do on your son to look for specific deficiencies, like iron, B vitamins, calcium, and more. Then he could take specific supplements for these until he started healing more.
Also, if he is still on dairy products this could delay his healing, since the first part of the villi to be damaged is the tip and that is where lactase is produced. If the damage is bad it will be a while before he could digest dairy properly and it will cause his healing to be delayed. So you should probably have him totally dairy free for a few weeks and then slowly add a bit of lactose free products until he is healed (which can take up to a year or two, but many show drastic relief of symptoms within a few months).
I hope this helps a bit, and I am glad that you know what is wrong with your son. It can be frustrating to have a child with an illness and not know what is wrong. Now it is within your power to help him achieve health!
This is good, but it can be a very stressful time with so much to learn. Try not to be too hard on yourself if mistakes happen. They happen to all of us, even to people who have been gluten free for years! It would be good if you can get your son involved in the shopping and meal preparation. This will help him tremendously, since he will be a teenager in a few years and will need to know how to shop and prepare his own foods. A great book to read, if you haven't already is Danna Korn's book, "Wheat Free, Worry Free". She also has a book about raising Celiac Children called, "Kid's with Celiac Disease". You might also want to see if there is a local chapter of a ROCK (Raising Our Celiac Kids) support group. getting together with other families of celiacs can really help a lot.
I hope you can get your son in earlier than June, but the fact is that many doctors don't know much about the gluten free diet. They give the diagnosis (and you are luck to have that, many never get that far!) and then the docotr sends you on your way, and you are on your own with this new way of eating and living! It might help to consult a nutritionalist or a dietician, but even some of them are not trained in a gluten free diet. If you live in or near a large city, you will probably have more resources available to you.
Well, I'm sorry for rambling on so much. I hope I helped a bit.
God bless,
Mariann
~West Coast-Central California~
Mariann, gluten intolerant and mother of 3 gluten intolerant children
Mariann, gluten intolerant and mother of 3 gluten intolerant children
#4
DLayman
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Posted 20 January 2004 - 09:17 AM
I would add to the book reccomendations Breaking the vicious cycle by elaine Gotshall you can read a few chapters and getmore info at www.breakingtheviciouscycle.info and www.pecanbread.com
this might be a way to go for you if simple gluten-free doesn't cut it
this might be a way to go for you if simple gluten-free doesn't cut it
#5
hillary_henry@yahoo.com
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Posted 20 January 2004 - 09:44 AM
Hi,
My daughter is 5 years old both blood tests are posative for celiac disease, she gets her biopsy in two weeks. Ronni has been much better this month except her stool is almost white and it floats usually she has diarrhea and vomiting. When I told the doctor this I could see the concern in her face. Does anyone know what this means. I have been a wreck ever since they told me she might have celiac.
Thanks,
Hillary
My daughter is 5 years old both blood tests are posative for celiac disease, she gets her biopsy in two weeks. Ronni has been much better this month except her stool is almost white and it floats usually she has diarrhea and vomiting. When I told the doctor this I could see the concern in her face. Does anyone know what this means. I have been a wreck ever since they told me she might have celiac.
Thanks,
Hillary
#6
seeking_wholeness
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Posted 20 January 2004 - 10:37 AM
Hillary,
It's difficult to come to terms with the prospect of having to deal with celiac disease, especially in your child! Take it one day at a time, and give yourself a chance to grieve and adjust. Your world just turned upside down, and it probably feels like nothing will ever be normal again. With time, you will be able adapt to your new lifestyle, and your daughter will regain her health, I'm sure.
On that subject, what color is your daughter's urine? Is it darker than usual? Pale stools plus dark (tea-colored) urine suggest hepatitis. The term hepatitis simply means liver inflammation; it is usually caused by a virus, but it could be related to undiagnosed celiac disease. You might want to ask your daughter's doctor about this.
Also, is your daughter already on a gluten-free diet? If so, this may skew the biopsy results, producing a false negative! This may be something else to bring up with the doctor, if appropriate.
I wish you and your daughter the best as you seek the reason for her troubles!
It's difficult to come to terms with the prospect of having to deal with celiac disease, especially in your child! Take it one day at a time, and give yourself a chance to grieve and adjust. Your world just turned upside down, and it probably feels like nothing will ever be normal again. With time, you will be able adapt to your new lifestyle, and your daughter will regain her health, I'm sure.
On that subject, what color is your daughter's urine? Is it darker than usual? Pale stools plus dark (tea-colored) urine suggest hepatitis. The term hepatitis simply means liver inflammation; it is usually caused by a virus, but it could be related to undiagnosed celiac disease. You might want to ask your daughter's doctor about this.
Also, is your daughter already on a gluten-free diet? If so, this may skew the biopsy results, producing a false negative! This may be something else to bring up with the doctor, if appropriate.
I wish you and your daughter the best as you seek the reason for her troubles!
Sarah
gluten-free since November 1, 2003
gluten-free since November 1, 2003
#7
JsBaby_G
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Posted 20 January 2004 - 04:00 PM
Ryebaby0,
That is unusal that you should have to wait that long for a follow up. I would push to see a doctor to discuss the results. I went to school for hospital administration and I looked in my medical dictionary and this is what I came up with.
Acute Cryptitis
Inflammation of a follicle or glandular tubule, particularly in the rectum in which the onset symptoms occur rapidly.
I wouldn't worry too much about that. Those are just fancy words for inflammation (probably of the intestinal tract, which we already know is true of Celiac Disease)
Abscess
A localised collection of pus caused by the formation of pus being buried in tissues, organs or confined spaces. Usually due to an infective process.
Either way I would try to get a doctors translation. I want to make it very clear that I am not a medical professional and am not making any kind of diagnosis.I just wanted to try to shed light on the medical terms for you!
Hope that helps!
That is unusal that you should have to wait that long for a follow up. I would push to see a doctor to discuss the results. I went to school for hospital administration and I looked in my medical dictionary and this is what I came up with.
Acute Cryptitis
Inflammation of a follicle or glandular tubule, particularly in the rectum in which the onset symptoms occur rapidly.
I wouldn't worry too much about that. Those are just fancy words for inflammation (probably of the intestinal tract, which we already know is true of Celiac Disease)
Abscess
A localised collection of pus caused by the formation of pus being buried in tissues, organs or confined spaces. Usually due to an infective process.
Either way I would try to get a doctors translation. I want to make it very clear that I am not a medical professional and am not making any kind of diagnosis.I just wanted to try to shed light on the medical terms for you!
Hope that helps!
Crystal
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