Update On My Daughter's Biopsy

[Guest Chrisbee]

Ugh. We were told that we could call in four or five days and get the results of her endoscopy biopsy, but when she called, she was told the doctor wants to discuss the results with her.

My daughter is 22, has had health issues almost all her life and was only recently tested for celiac. Her blood tests were negative, she was told, but her doctor still thought she might have celiac disease, so she sent her for more testing. She had the biopsy last Thurs., and had an appointment with the doctor yesterday, but she had to reschedule so now we have to wait another 5 days to find out the results. I'm impatient, lol!!!

My two youngest children, ages 6 and 1, and I have been gluten free since the beginning of March, so we can't be tested. We've seen a great improvement in our health, though, so we are sticking with it. My 10yo is still not convinced, even though last week when he ate a soft pretzel he had D for days and then this week he ate fried chicken and has sores on his lips and has been grouchier than ever. I am making an appointment to have him tested too, because he's the only other family member that still eats gluten, but I'm not sure he eats enough of it to test positive even if he has celiac disease. And if he tests negative, I don't think I'll be able to keep him on the diet. My husband told me I could test him through Enterolab, so I may do that.

I'll let you all know what my daughter finds out. I think she's planning on going gluten-free regardless of the results, but for now, she's enjoying everything she knows she'll have to give up.

[gfgypsyqueen]

Tell her to eat her favorite pizza, beer, and fried foods...lol... boy I miss those days...

Seriously though good luck to her and the family. Sorry she has to wait so long...

[Guest Chrisbee]

Tell her to eat her favorite pizza, beer, and fried foods...lol... boy I miss those days...

Seriously though good luck to her and the family. Sorry she has to wait so long...

Thanks. We've had such a bad week..my grandma had gall bladder surgery last Friday and passed away unexpectedly Sunday morning, so we are all sad and exhausted. My daughter just didn't feel like going to the doctor yesterday after all the running we have done all week. She was hoping they could just give her the results over the phone (as they said they would) and then reschedule her appointment.

Our extended family was together most of the week, and I had to take a cooler of food with us wherever we went. Most everyone was already aware that I had the kids on a gluten-free diet because our family networks like crazy...you can't do anything without everyone knowing about it! I was just surprised how many of our family asked me about symptoms and wanted to know where they could find gluten-free foods and which foods were naturally gluten-free. Diabetes and thyroid problems tend to run on that side of the family and many of them have GI issues as well. And this may get me in trouble, but several of the great grandchildren seemed to have ADHD and/or Asperger type symptoms too. They were WILD at the funeral!

[NY547]

Hi Chrisbee,

Thanks for sharing. You,ve convinced me, if your daughter's bx shows anything, then I will go ahead and have my daughter's done. I've been considering it for 4 years! At a recent GI referral, he offered it saying up to 20% of seronegative individuals show signs of "something" on the bx. My family thinks I'm nuts! (Even though my aunt has confirmed celiac disease and my daughter's enterolabs were positive)

My daughter went gluten-free just to get her through finals, and she is the picture of health now, has been gluten-free for 2 weeks, but will probably eat gluten this weekend at her dad's big family event just to avoid the "you're mother's crazy" comments!

My son has tourettes, ADD and had been diagnosed with severe depression. He was tested about 4 years ago and his celiac blood work was negative. Maybe I should have him re-tested also!

So sorry about your grandmother, sounds like it was a really difficult week! Maybe it is best to wait a few more days for the diagnosis, 1 less thing to worry about right now. Please tell your daughter that My daughter's favorite food is lasagna (anything italian really). I made a huge pan of lasagna using Tinkyada noodles. It came out great, she loved it. Going gluten-free is not the end of the world, but rather getting your health and your life back.

[Guest Chrisbee]

Hi Chrisbee,

Thanks for sharing. You,ve convinced me, if your daughter's bx shows anything, then I will go ahead and have my daughter's done. I've been considering it for 4 years! At a recent GI referral, he offered it saying up to 20% of seronegative individuals show signs of "something" on the bx. My family thinks I'm nuts! (Even though my aunt has confirmed celiac disease and my daughter's enterolabs were positive)

My daughter went gluten-free just to get her through finals, and she is the picture of health now, has been gluten-free for 2 weeks, but will probably eat gluten this weekend at her dad's big family event just to avoid the "you're mother's crazy" comments!

My son has tourettes, ADD and had been diagnosed with severe depression. He was tested about 4 years ago and his celiac blood work was negative. Maybe I should have him re-tested also!

So sorry about your grandmother, sounds like it was a really difficult week! Maybe it is best to wait a few more days for the diagnosis, 1 less thing to worry about right now. Please tell your daughter that My daughter's favorite food is lasagna (anything italian really). I made a huge pan of lasagna using Tinkyada noodles. It came out great, she loved it. Going gluten-free is not the end of the world, but rather getting your health and your life back.

Thanks NY547.

I've been finding out that many people who tested negative on the blood tests go on to have a positive biopsy. I'm really anxious to find out if she does too. Our family has had so many people with these sorts of symptoms for so long and we've never found out what it is. When we'd go out to eat as a family, we'd all be knocking each other over afterward to get to the bathroom!

If your daughter eats gluten this weekend, her reaction may be enough to convince her to remain on the diet. It's a shame that her father's family can't be supportive.

I don't get the "your mother's crazy" thing from anyone so far, thank goodness. I think it's because of so many of us having symptoms for so long, they are ready to find out if there's something we can do about it. My oldest son (19) has had symptoms too, and was diagnosed with ADD and learning disabilities when he was younger, but he is adamant that he does not want to be tested. I think it's his attitude that is rubbing off on my ten year old, because soon after he talked to his older brother, he decided to go off the diet too.

I made Tinkyada lasagne a couple of weeks ago...but I made veggie lasagne so I was the only one who would eat it! It was very good and I'm sure they would eat a hamburger or ground pork version. My daughter wasn't here to try it. Everyone loves macaroni and cheese made with Tinkyada, however. I probably make that 3 times a week for the boys!

Speaking of Tourettes, when I took my 10yo son to a new doctor when he was 4, she said she could see that he had neurological problems...clearing of the throat, flipping his fingers, and rocking back and forth when he talked. He had already taught himself to read and had been reading for a couple of years at that point. I was devastated that she thought he had problems, so I took him back to our family practioner we had had for years before we moved, and he said there was nothing wrong with him. I was satisfied with that (stupidly). He's gone on to skip grades, and tested out far beyond his years, but this year something happened, and he failed most of his classes. His tics are mostly gone now, but he has trouble getting along with others, he has no patience for them. He has ADD symptoms as well, just like his older brother. No hyperactivity, just forgetfullness mostly. Anyway, I wish I would have followed up. He does seem better on the diet, but he never stays on it for more than a couple of weeks at a time. We have an appointment with a GI specialist on the 20th and I'm going to see if he will test him too. The appointment is actually for my 6yo, but he's been gluten-free since March and his symptoms are mostly gone, so I doubt testing would do any good for him.

You'll have to keep me updated on your children. Their issues sound similiar to my children's.

[NY547]

Let me guess, your son didn't do very well because he hardly ever gets his homework in on time, even when he brings home the right stuff, he just can't seem to do it. That's the situation here. My son is also very smart, and tested 4 grade levels above where he should be, back in 4th grade, he scored the highest on a standardized test in the history of the school, and it was the same school I went to! He is 12 now. His tics have also abated over the past 2 years, but the social and emotional aspects remain. He has the most difficulty during unstructured times, like caffeteria, school bus, hallways and during transitions.

Whether a gluten-free diet would help him, I don't know, I never really tried it with him, but there does seem to be a lot of signatures on this board where relatives of celiacs have ADHD, Apergers or other related disorders. It could be that just taking away the food preservatives, colorings and chemicals helps. When we cook gluten-free, it is much more healthy than all those pre-packaged foods I used to make! And I know there is a connection with food colorings and preservatives in kids with ADHD, etc.

Whether your son (10) has celiac or not, I would recommend following up with someone. I watched my son really struggle over the past 4 years with the attitude we'll wait and see. A few months ago the school notified me he was getting more depressed. He is now being treated with clonidine and a very low dose antidepressant. On a recent survey he actually answered that he likes himself! He still has a long way to go making friends and with social skills, but there have been improvements. He also takes karate, which is great for his self esteem and building self discipline skills. At this point you may not want to go the medication route, but the school can still provide accomodations with a 504 plan to help him achieve his full potential. If I would have insisted on it a few years ago, we probably wouldn't have gotten to the point where he needed medication. (The school was all for it, but his dad refused to admit he needed help and refused to allow the school to implement the plan)

Sorry for going off celiac topic, everyone! I tried making mac and cheese once, it was horrible! I like the tinkyada noodles, but the cheese was all lumpy and icky. Maybe you can share your recipe? That would be great, although if my daughter eats gluten today, I'll probably just keep her eating it and schedule the bx depending on her reaction over the next week.

[Guest Chrisbee]

Let me guess, your son didn't do very well because he hardly ever gets his homework in on time, even when he brings home the right stuff, he just can't seem to do it. That's the situation here. My son is also very smart, and tested 4 grade levels above where he should be, back in 4th grade, he scored the highest on a standardized test in the history of the school, and it was the same school I went to! He is 12 now. His tics have also abated over the past 2 years, but the social and emotional aspects remain. He has the most difficulty during unstructured times, like caffeteria, school bus, hallways and during transitions.

Whether a gluten-free diet would help him, I don't know, I never really tried it with him, but there does seem to be a lot of signatures on this board where relatives of celiacs have ADHD, Apergers or other related disorders. It could be that just taking away the food preservatives, colorings and chemicals helps. When we cook gluten-free, it is much more healthy than all those pre-packaged foods I used to make! And I know there is a connection with food colorings and preservatives in kids with ADHD, etc.

Whether your son (10) has celiac or not, I would recommend following up with someone. I watched my son really struggle over the past 4 years with the attitude we'll wait and see. A few months ago the school notified me he was getting more depressed. He is now being treated with clonidine and a very low dose antidepressant. On a recent survey he actually answered that he likes himself! He still has a long way to go making friends and with social skills, but there have been improvements. He also takes karate, which is great for his self esteem and building self discipline skills. At this point you may not want to go the medication route, but the school can still provide accomodations with a 504 plan to help him achieve his full potential. If I would have insisted on it a few years ago, we probably wouldn't have gotten to the point where he needed medication. (The school was all for it, but his dad refused to admit he needed help and refused to allow the school to implement the plan)

Sorry for going off celiac topic, everyone! I tried making mac and cheese once, it was horrible! I like the tinkyada noodles, but the cheese was all lumpy and icky. Maybe you can share your recipe? That would be great, although if my daughter eats gluten today, I'll probably just keep her eating it and schedule the bx depending on her reaction over the next week.

You are exactly right...he did great on all the work he did in class, but the homework was forgotten so many times that he actually flunked three classes. I can tell him to do something at home and he forgets a minute later. Or he takes off to do it and forgets on the way what it was he was supposed to do. He also tested the highest on the standardized tests, higher than anyone in the school, and it just seems ridiculous that he would be flunking classes now! He has friends, but he gets so mean and grouchy with them, sometimes I don't know how they put up with him. He seems to have problems with his temper instead of having depression.

My daughter's biopsy did come back positive for celiac. I'm relieved that we finally know what it is. And I'm aggravated that it took so long for her to be diagnosed. She is going to see a dietician and also has to have an x-ray of her small intestine as soon as she can get it scheduled. I'm not sure what that is for, but her doctor wanted her to have it done right away.

She has a two and a half year old daughter and is going to have her tested now also, and then I take my 6yo to another specialist next Wednesday, so we'll see what they want to do with him because he's been gluten free for several months now. I will ask him about my 10yo too. I have a suspicion that his problems are gluten related too because I feel so much more clear headed being off of it. I was diagnosed with depression and ADD as an adult, but after a few years on medication, I decided I didn't like the way it made me feel or what it was doing to me, so I went off it. I'm doing great now, still forgetful, but nowhere near like I was before.

[NY547]

Your daughter's Bx was positive! Wow. I'm happy you finally have an answer. It is a difficult position to be in, you want your loved ones to be healthy but at the same time you are hoping everything comes back negative. Well at least now she knows.

I remember when we had my daughter's blood work done last year. When the results came back negative, I was happy, almost celebrating, her eyes filled with tears. She said now we still don't know what's wrong and I'll just keep getting sick. I think that is mostly why I am still here on these boards, trying to find out what's going on.

My son had "anger" issues when he was younger. His psychologist said that in children, depression offen manifests itself as anger. He would have these huge rage attacks, set off by such little things. It would take him 30 minutes to an hour to calm down. He would get very quiet, almost in a brain fog for a little bit before finally returning to his regular self. Thank God he doesn't get those anymore! We are on the right track with him, now we just have to get his sister healthy.

She ate gluten this weekend, and by Monday Evening she looked horrible! Her eyes were all glassy and teary and she was getting more fatigued again. Yesterday she seemed OK, but she drank one of those energy drinks. EEK, I don't know where she got one of those from! She did mention she had a headache, but she never gets them when on gluten-free diet. I'll see how she is after school today. I know that being off the gluten she seems much happier and easy going, has more patients, especially with her brother.

Take care. I'm so glad you found some answers. Maybe you could ask the doctor next week about enterolab for your grandson and sons. Since celiac disease is confirmed in your family, maybe that would be all that is needed to dx your boys. Hopefully the doc will explain how serious it is so your 19yo will agree to be tested. Good luck! Thanks for keeping us updated.

[happygirl]

chrisbee: im happy that you have some answers for your daughter. you must be relieved and overwhelmed at the same time. best of luck, and hope that you continue to stick around.