Help-any Suggestions?

[linsmad]

I am new to this board...I recently had both of my children blood tested for celiac-and my older daughter (age 6) came back positive. She shows no signs or symptoms at all. My husband was dx with celiac about 5 years ago. My pediatrician recommended that we take our daughter to a pediatric GI doctor. Has anyone had similiar experiences? Did you have go through an endoscopy or were you able to just put the child on a gluten free diet? I am willing to accept the gluten-free diet, but am reluctant to put her through an endoscopy, as it will only confirm what we already are confident of through blood test. Is it really important to know the level of damage in her body? Have your gi docs recommended endoscopy anyway? Also, did you begin a gluten-free diet immediately after blood work confirmation? Any help would be greatly appreciated!!!

[shan]

Welcome to this board, how is your daughter taking it? It must be hard for a 6 year old with no issues to want to go on this diet! About the biopsy, it depends on your/your childsnature - will she be able to go through life with blood work as an official diagnosis, or will she cheat? I did it on my 2 year old - given mine and my husbands nature, she would eat gluten and live thru the pain

[dandelionmom]

I'm not sure how I'd handle it in your situation. My daughter was pretty sick when she got her diagnosis and when she's accidentally gotten gluten she has a strong reaction so the endoscopy wasn't necessary to keep her honest or to convince us that the bloodwork and dietary response were positive.

[Darn210]

Once she's gone gluten free for a while, she may start reacting to gluten . . . However, if you think you might want the endoscopy, make sure you keep her on gluten until she has it done. Will the doctor give the positive diagnosis based on the blood test and the family history? If it were me, I would be looking for the positive diagnosis from the doc (for any future dealings with schools, camps, etc) and if he is willing to do it without the endoscopy, I personally would skip it. Having her father as a role model will definately be an advantage (assuming he is good about his diet).

[linsmad]

Thanks for yor replies. The pediatric GI doc office said that they will do as little invasive testing as possible to gain a diagnosis. I am confident that we may be able to avoid an endoscopy in this case. What is strange is that our pediatrician (when giving me the results that my daughters blood test was positive) asked me if she eats gluten currently, or is if she is currently on some sort of a gluten/wheat restricted diet? This leads me to think that her blood work numbers were not really that high. She currently eats whatever she wants. Am I crazy to think this? I have a call into the doctor to further explain the results, because perhaps they were borderline? Has anyone ever done prometheus testing, or other advanced bloodwork testing to confirm their diagnosis?

I honestly think my daughter will be fine whatever the outcome. We do a lot of baking for my husband, and my kids LOVE his gluten-free food! Hopefully we'll make this as positive as an adjustment as possible =

[Kibbie]

I am new to this board...I recently had both of my children blood tested for celiac-and my older daughter (age 6) came back positive. She shows no signs or symptoms at all. My husband was dx with celiac about 5 years ago. My pediatrician recommended that we take our daughter to a pediatric GI doctor. Has anyone had similiar experiences? Did you have go through an endoscopy or were you able to just put the child on a gluten free diet? I am willing to accept the gluten-free diet, but am reluctant to put her through an endoscopy, as it will only confirm what we already are confident of through blood test. Is it really important to know the level of damage in her body? Have your gi docs recommended endoscopy anyway? Also, did you begin a gluten-free diet immediately after blood work confirmation? Any help would be greatly appreciated!!!

My daughter was 18 months old when she was diagnosed and we were sent to a pediatric GI. We did do an endoscopy and up until recently I felt like I should have stuck to my guns and said no to that. Now I am starting to have a change of heart knowing that we have actual "gold standard" proof for when she is older is kind of comforting at this point. I never would have known what an independent stubborn little girl I would have at 18 months old... you know your daughter.... if she is the type is will need "proof" when she is older then I say do th endoscopy... if you think she will accept what you tell her with out "proof" then don;t do it. Positive blood work is positive.

[AliB]

I am new to this board...I recently had both of my children blood tested for celiac-and my older daughter (age 6) came back positive. She shows no signs or symptoms at all. My husband was dx with celiac about 5 years ago. My pediatrician recommended that we take our daughter to a pediatric GI doctor. Has anyone had similiar experiences? Did you have go through an endoscopy or were you able to just put the child on a gluten free diet? I am willing to accept the gluten-free diet, but am reluctant to put her through an endoscopy, as it will only confirm what we already are confident of through blood test. Is it really important to know the level of damage in her body? Have your gi docs recommended endoscopy anyway? Also, did you begin a gluten-free diet immediately after blood work confirmation? Any help would be greatly appreciated!!!

My oldest grandson is almost 7 and showed no real signs of gluten intolerance apart from an occasional stomach ache, until about 4 or 5 months ago when he started getting problems with messing himself (which I have just posted a new thread about). We may not have even considered GI/Celiac to be the problem except my digestion collapsed in Jan and I figured out my own intolerance and went gluten-free.

He has always been a very sensitive child, needing lots of attention and seems to have a problem with low blood sugar, but has always been healthy otherwise and had a good appetite - unlike his younger brother who is very picky (and who I am convinced also had gluten issues behind his short stature and learning delay) he loves fruit and vegetables.

The thing is, just because your daughter doesn't show any obvious symptoms of Celiac just now doesn't mean that it isn't still doing it's dirty work inside, and that symptoms won't show up sooner or later. Connor's didn't manifest until a few weeks ago.

If your daughter's blood test has come back positive and she is showing no symptoms, especially gut, then I would feel that it would be pointless putting her through the stress and trauma of a gastroscopy. It is highly invasive and distressing even for adults, let alone children, and at this point may well not show anything anyway. If the doctors are happy to accept the blood test as proof positive then what is the point of going any further?

Our grandson will be seeing the Ped at the end of next month - his tests came back 'negative' and 'borderline, no action' whatever that means (? you are either Celiac or not!). Meanwhile we will pin down his diet and hopefully that will be enough evidence to convince them.

[Denise61]

My daughter was 18 months old when she was diagnosed and we were sent to a pediatric GI. We did do an endoscopy and up until recently I felt like I should have stuck to my guns and said no to that. Now I am starting to have a change of heart knowing that we have actual "gold standard" proof for when she is older is kind of comforting at this point. I never would have known what an independent stubborn little girl I would have at 18 months old... you know your daughter.... if she is the type is will need "proof" when she is older then I say do th endoscopy... if you think she will accept what you tell her with out "proof" then don;t do it. Positive blood work is positive.

I would have to disagree with that statement. My son tested positive at four by bloodwork, but showed no evidence of the disease when undergoing the endoscopy. We have since learned that he carries the marker for celiac disease. I would want to know for CERTAIN that my child had celiac disease before I went about trying to make such drastic changes to his diet that he will have to follow for life. Why would you want to put a child through that if you didn't know for sure of the diagnosis? My understanding is that the endoscopy is THE golden standard of diagnosis.

[linsmad]

Denise61

Does your son have celiac? Or does he just have the markers for celiac? My daughter blood tested positive (slightly) but shows no other symptoms. She is and has always been 95 percentile for height. My ped contacted the pediatric gi (we have an appt in july) and said that further evaluation would be necessary. Did you do any additional bloodwork or just an endoscopy? Thank you for your reply...I wasn't sure if this ever happenned?

[Denise61]

Denise61

Does your son have celiac? Or does he just have the markers for celiac? My daughter blood tested positive (slightly) but shows no other symptoms. She is and has always been 95 percentile for height. My ped contacted the pediatric gi (we have an appt in july) and said that further evaluation would be necessary. Did you do any additional bloodwork or just an endoscopy? Thank you for your reply...I wasn't sure if this ever happenned?

linsmad,

At this point in time, he does not have celiac. He was retested at age six because he had developed stomach issues, and the doctor wanted to be thorough given the prior positive test result. He tested negative at that time, and that was when they tested for the marker. He has that unfortunately, but may very well never develop the disease. He was diagnosed with irritable bowel syndrome instead. He's had no problems since, and he's almost ten now. He has had something going on with his stomach this past week, so of course this has come back to my mind and that is why I sought out this forum. We have had several tests that have all been normal, which is a good thing. It's very possible that it's a case of gastroenteritis, and we just have to wait for it to run its course. It's just very difficult to watch him be uncomfortable for so long! We'll have another follow up on Tuesday. Hopefully, he will be better by then. If not, I will really be worried about his having developed celiac! I would suggest you read Danna Korn's Kids With Celiac. It's an invaluable resource and may answer many questions for you.

Good luck!

[gfpaperdoll]

Denise61, I hope you do some research & find out that the other "marker" that your son has might be a gluten intolerance gene & he could get brain damage, organ damage, arthritis, osteo, tooth enamel defects, cancer or other auto-immune illnesses before his villi are damaged.

& IBS is not a disease, just like vomiting is not a disease. It is a symptom of a problem. I think that your son's health is already majorly compromised...

[Aleshia]

Once she's gone gluten free for a while, she may start reacting to gluten . . . is good about his diet).

I agree. thats how it was for me, I had all kinds of symptoms that weren't typical but after going off gluten and back on again I started getting stomach pain from it

[Denise61]

Denise61, I hope you do some research & find out that the other "marker" that your son has might be a gluten intolerance gene & he could get brain damage, organ damage, arthritis, osteo, tooth enamel defects, cancer or other auto-immune illnesses before his villi are damaged.

& IBS is not a disease, just like vomiting is not a disease. It is a symptom of a problem. I think that your son's health is already majorly compromised...

Okay, that sounded like an attack! That's a big leap to telling me that his health is "majorly compromised" when you don't know his health history. You have to realize that every stomach ailment is not celiac. I have taken him to very competant doctors with celiac experience. He had trouble with the I.B.S. for about two months - perhaps there was something going on at school that was making him nervous, and we haven't had trouble since. I do not take this lightly. When he was diagnosed with celiac disease, I had myself tested as well. I have always had stomach troubles. I found a good GI who ran blood work and performed an endoscopy which were both normal. I wanted to be tested because my aunt had celiac disease so I knew that it was in my genetic makeup. I was diagnosed with IBS at that time. And now I can make connections between stress and my showing symptoms. I cannot do that with food. I know very well that IBS is not a disease, It is a combination of symptoms. And incidently, he wasn't tested originally because he was having any stomach issues. It happened that an Endocrinologist ran a battery of tests on him that included the celiac disease screening. We had ended up seeing her because of some episodes where my son woke very nauseas, with slurred speech, and lack of balance with the need to vomit. To make a long story short, it turned out to be cyclic vomiting syndrome that is a form of stomach migraine. Our GI had thought the episodes could be seizures associated with celiac disease. We found out four days before his endoscopy(from a very competant neurologist) that they were migraines (I get migraines - he gets that from me too), and not seizures as we had feared. My doctor really thinks he has a case of gastroenteritis, but is watching him very carefully. He knows about the previous screenings, and if he doesn't improve, will look into that. I have complete faith in this doctor, and I don't usually say that about much of the medical profession. I always do my homework so that I will know what is happening. I know full well that many of celiac disease symptoms mimic other illnesses and often go undiagnosed. I don't think that is the case here. Don't be so quick to judge especially without all the facts!

[Worriedtodeath]

Just wanted to comment that my daughter when we were first going thru this battle (she's negative all the way around) never ever showed symptoms before 11 days of ingesting gluten. I tried it three times with different forms of gluten. I feed her the same diet every day for three weeks. Only fruit and veggies. Each time I introduced one new food that contained gluten. That was the only new thing she was given each and every day. So for one trail we feed her the normal fruit and veggies plus cheerios. Each and every trial took 11 days before she began to have any gi symptoms. The allergist said no way it could be an allergy due to the length of time it takes to upset her. The gi said no way she has a problem with gluten because her biopsy was negative despite visible signs of typical Celiac.

I have had IBS for years that was always triggered by stress. 4 months of gluten free and my Ibs that had for years -been daily - As the gi said I'm female and a mom so my stress must be thru the roof- has finally disappeared. Just because it doesn't show up immediatley doesn't mean it isn't food triggered. Gluten does take awhile to damage the intestines before you get results of it.

Just wanted to say that it can present in ways that isn't textbook and isn't recoginized by drs. A gluten free trial of 4 - 6 months may benefit you in ways that you didn't anticipate.

[RainyZ]

I don't know how to insert quotes, so I will paraphrase...

Denise61 mentioned getting the endoscopy done prior to making such drastic diet changes.... I disagree. My dd stopped gaining weight at 9 months. At a little over a year old, I took her off gluten for a few weeks (and eliminated it from mine since she was nursing) and she immediately began to gain weight. I caved when the pediatrician said that he doubted she had celiacs and let her have it again. She began losing weight again and all the other issues came back. When I went back to him, I had a food diary, which helped quite a bit. She was eating over 1200 calories a day and losing weight! He said to take her off of gluten for a couple weeks and if she begins to gain and feel better that was all he needed. He said he would refer me to a GI, but didn't think invasive testing made any sense. He would be convinced.

So, if the diet helps (it really isn't that hard to do) then why would you need other proof??? Especially something invasive and not totally reliable. I can't imagine putting my DD back onto gluten for testing either. I KNOW she has it.

Maybe I am fortunate, because if I needed a letter for school or any other organization, I am sure he would provide one. But I shouldn't need a letter from anyone stating what I don't want my child to eat. If I tell my child's teacher "no gluten", that should be it - no gluten. I shouldn't have to "prove" anything. I've found that "my daugther has an autoimmune disease and can't eat that because it makes her ill" works quite well.

[Denise61]

I don't know how to insert quotes, so I will paraphrase...

Denise61 mentioned getting the endoscopy done prior to making such drastic diet changes.... I disagree. My dd stopped gaining weight at 9 months. At a little over a year old, I took her off gluten for a few weeks (and eliminated it from mine since she was nursing) and she immediately began to gain weight. I caved when the pediatrician said that he doubted she had celiacs and let her have it again. She began losing weight again and all the other issues came back. When I went back to him, I had a food diary, which helped quite a bit. She was eating over 1200 calories a day and losing weight! He said to take her off of gluten for a couple weeks and if she begins to gain and feel better that was all he needed. He said he would refer me to a GI, but didn't think invasive testing made any sense. He would be convinced.

So, if the diet helps (it really isn't that hard to do) then why would you need other proof??? Especially something invasive and not totally reliable. I can't imagine putting my DD back onto gluten for testing either. I KNOW she has it.

Maybe I am fortunate, because if I needed a letter for school or any other organization, I am sure he would provide one. But I shouldn't need a letter from anyone stating what I don't want my child to eat. If I tell my child's teacher "no gluten", that should be it - no gluten. I shouldn't have to "prove" anything. I've found that "my daugther has an autoimmune disease and can't eat that because it makes her ill" works quite well.

I was in a situation where there were no symptoms being exhibited so there were cetainly no reactions to gluten to be seen. Given the same set of circumstances , I would have the endoscopy done again in a heatbeat. I think it is very different when you are seeing symptoms and can make clear connections to diet. When this is not the case, wouldn't you want to be sure? It was sort of a fluke that he was even tested in the first place. We had no concerns about his health except for some episodes that turned out to be migraines! Had I just radically changed his diet, I think I would have been doing him a great disservice! We have to remember that each case is unique, and one plan of care will not fit every one.

[linsmad]

I think that in my case several people recommended getting an endoscopy as proof. Since we have no reason to suspect anything (any change in diet may only improve things internally) it would be hard to judge whether dietary changes are working. Before instituting a lifetime of changes for my daughter-should we have the "gold standard" proof? My pediatrician had told me that with our family history and the slightly positive bloodwork, he was comfortable saying that she has celiac. When the same doc consulted a pediatric gi with the test results and growth charts, this doc was not comfortable with a celiac diagnosis without further evaluation. They said more conclusive testing needs to be done. I guess the positive is not such that even with a family history is so conclusive that warrants no additional testing. My husband and I are looking to do as minimially invasive testing as possible, but yet be comfortable that we have a conclusive diagnosis. I don't want my daughter to turn 13 and question this. Even for myself-I don't want to look back and question this situation. Does this make sense? This whole celiac thing can be so complicated!!!

[RainyZ]

Yes, I can see the decision to test a child who is asymptomatic would be a much more difficult. In that situation, I do think I would want to know as best as I could. My dd is young, so a diet change isn't all that terrible to her. Really it is just hard on me since I am the one who has to decide what to feed her at home and when we are out and about. She really does eat constantly. She doesn't seem to eat as much now, but still as often. I dread when she is older and goes to school! I won't be there then to monitor what she eats. Even now, she always wants what her brother has so I cook everything gluten free when my dh and ds are home. I put the gluten stuff in their lunches, so she won't see it. LOL.

If a child shows no symptoms, is the same damage to the small intestine being done? How does that not affect their absorption?

I do think that grains are unnecessary to our health though. I've always felt wonderful on low carb diets but failed when I tried to add back grain. It hasn't bothered me to not eat gluten containing products. Perhaps I have celiacs as well. I think because of their mass production, they make an inexpensive food source. With the way they are added to foods, I am sure this will just get more and more common. I imagine corn will be next if not already a problem. Soy seems to be in everything as well. Instead of trying to replace grain foods with gluten free subs, I've just concentrated on fruits, veggies and protein sources.

I am sorry you are in that situation, but you will make the right decision for you child. You already care enough to learn and question what people are telling you.