Hi! I'm New Here!

[fleckapo]

my name is blaike and we just found out that my daughter elise has celiac disease. she had been having stomach issues for quite a while but just intermittantly. lately (i'd say the past month or so), she's had cramping everyday. there wasn't a day that went by that she didn't tell me that her stomach hurt. she would wake up in the middle of the night in pain (which clearly told me something was wrong).

in the past i'd taken her to the ER to rule out appendicitis because her pain had gotten so bad at times. they told me that she was constipated (which was always the answer). and that began our daily miralax routine. it seemed to help get the poop out (sorry tmi) but didn't really help with the cramping.

over the last month or so (like i mentioned before), things had gotten worse. she was complaining way more, she had intermittant diarrhea and occasional vomiting for no reason at all. the doctor took her off all lactose and for about 4 weeks, it seemed like she was slowly getting better.

one day last week she woke up in extreme pain and i called the next day and they ordered all the blood tests (this was monday). she got the CBC (normal), enzymes (normal), inflammation (normal), sodium (normal), potassium (normal).

but her celiac panel came back positive. out of all four tests, one was positive, and the other 3 had elevated numbers. i don't have the numbers in front of me because she has her appointment tomorrow where they will give me all the info i will need (gi doc number, nutritionist info, charts, levels, etc.).

my question is (and i realize it has taken a while to get here ) what are the chances that this is NOT celiac? i know that there is an endoscopy with a biopsy but is it totally necessary since the panel came back so clearly positive?

regardless, we took her off all gluten as of dinner last night. we sent a note to school with her and told her basically what she can and can't eat (which is tough for a 6 year old).

but i'm just wondering if it's possible that this isn't what it so clearly seems to be?

thanks so much and i look forward to talking to you all and learning all that you know!!!

[ShayFL]

No test is 100%. How old is your daughter? Under 6 it would be VERY unlikely to be a false POS. Also, if you are going to have the endoscopy SHE MUST KEEP EATING GLUTEN!! DO NOT take her off of gluten. Feed her her normal diet until the biopsy is complete. You can go gluten-free right after the procedure.

By taking her off of gluten now, the intestines can heal enough for a NEG biopsy, they they might say she doesnt have Celiac. And her blood clearly indicates she does. If she continues to eat gluten with Celiac, you could be setting her up for T1 Diabetes, Hashimotos Disease, Graves Disease, Infertility, Lymphoma and other autoimmune diseases.

It is so vitally important to get all of the testing done before gluten-free diet.

Now if you keep her on gluten and the biopsy comes back NEG, ask for a Genetic test. If she has one or more of the Celiac genes with a POS blood, many good doctors would dx Celiac this way. And a gluten-free diet is the only cure.

Do either you or your wife have any health issues? Bloating, loose stools, excessive bathroom trips, lots of gas, headaches, migraines, skin issues, thinning hair, fatigue, etc?

[Lisa]

Welcome!

A follow up endoscopy and biopsy are not necessary with clear positive blood work. What you have is a diagnosis in itself. It can show the level of damage and look for other issues. It is a personal choice.

Gluten can be pretty tricky and it's everywhere. We have many, many parents with young school age children. I'm sure they will help you as you deal with the school. There are lists of gluten free school supplies available too.

Glad to have you join us.

[fleckapo]

elise just turned six in september. i should mention that i am her mom (i know, blaike is a total guy's name ). i really don't want to put her back on gluten after taking such precautions the past 24 hours. is it totally necessary? i mean, knowing what i know, i don't think i can do that to her. does that make sense? i cried a lot yesterday and now i've been doing research and shopping all today. really i'm emotionally spent over this. i realize it's not a death sentence, but it's just SO not what i expected it to be. so, if the endoscopy is the only way to truly diagnose it, do i REALLY have to take her off the gluten-free diet until it can get done? i'm just done watching her suffer with almost constant pain.

also, i made a call to my doctor today about getting myself tested. she's out of town but i'm sure will send an order when she gets back next week because i have had stomach issues since young adulthood and been diagnosed with IBS. so yes, i totally have stomach issues and i am definitely getting tested.

my question is, i guess, can i just assume that with the bloodwork, she has celiac disease and get her on the road to recovery rather than waiting for a scope and feeding her things that could be so harmful?

[Darn210]

I understand you want to get on the road to healing ASAP, but if you are going to do anymore testing, she needs to stay on gluten. One day (today) isn't going to make a difference so don't worry about today. It's unlikely that you can get into a GI quickly but you never know. As soon as you have her test results in hand, I would call the GI's office and see if he will talk to you or at least talk to a nurse and get a message to him. If your blood test shows positive, see if he will make the diagnosis based on the blood test alone . . . or the blood test along with the response to a gluten free diet that you are wanting to start immediately . . . and I would tell them that she is having quite a bit of pain and vomitting etc and that you want to make the changes now. Long term, I think its beneficial to have an official diagnosis if you can get one.

My daughter was diagnosed when she was 6 also. I soooo know what you are going through!! I'm the one that cried at her diagnosis . . . I mourned her loss of certain foods (OK, mostly desserts ) that she hadn't even developed a taste for yet!!! The first couple of months were spent researching and reading and trying different products. Then I went into cooking/baking mode. We're doing GREAT . . . you will too!! I've got lots of tips for you when you're ready for them . . . but you need to be sure you are done with her testing first.

There's lots of great info on this board. Welcome.

[ShayFL]

my question is, i guess, can i just assume that with the bloodwork, she has celiac disease and get her on the road to recovery rather than waiting for a scope and feeding her things that could be so harmful?

A mother's instincts probably have more value than a medical degree. Yes, you can decide to take your daughter's health into your own hands. BUT and this a big BUT, by bypassing the biopsy, you may not get an official diagnosis. And at some point when your daughter is perfectly healthy, some doctor will question the diagnosis because it was only bloodwork. Then he will order more bloodwork and it will come up NEG (of course cuz she is on a gluten-free diet) and declare that she does not have Celiac. You might think to yourself, maybe she doesnt and feed her gluten again. She doesnt react , so you are relieved and let her eat gluten at will. Then she gets T1 diabetes or lymphoma (both related to untreated Celiac) and they retest for Celiac. Low and behold she does have it afterall.

What I am getting at is that once you make that choice. She is Celiac based on her bloodwork, it is for LIFE. The diet is for LIFE. No second guesses.

[gfpaperdoll]

Biopsy is a personal choice, & if you do it the biopsy might still come up negative, even if she has damage. The doc only samples a couple of spots. One of the complications of anesthesia is death. I personally would not subject a 6 year old to a biopsy. & there is also the chance that they perforate her intestine...

There is another option, Enterolab.com can test up to a year after you have gone gluten free. They also test for the gluten intolerant genes, or so they are labeled. Anyway they test for the whole range of genes, not just DQ2 & DQ8. This information does not go on your medical records & you do not need a doctor's prescription, you can order the test yourself.

If you have positive blood work, you have a diagnosis. & really that is enough on the records, I would not want to get any more on her records, if you can help it, no telling what problems with insurance companies that it might have in the future.

Also, since you have symptoms & are going to get tested, I think that you will also be positive... It is inherited,so...

[mom2twoangels]

Hi,

I agree that it is personal choice. For us I had to be 100% sure before I put her on a lifelong path. We already have several other food allergies and intolerances so to avoid another food is a big deal in our household. That said, our GI was super great about getting us in - we went for the biopsy the day after we saw him - so it was only one day where I really felt like I was poisoning my baby it was hard but worth it. If you do decide to do the biopsy I would call the GI beg for the closest appt. and even ask if they could get you on the biopsy schedule right then. If they have the correct blood work I would hope they would work with you. I did ask how many places he would be sampling I think ours said around 8

It is a bit more complex than it seems at first - for instance is your whole household going gluten free if not many recommend thing like separate toasters and baking sheets etc. Baking, School going out to eat all become a challenge and so on.

[Darn210]

Biopsy is a personal choice, & if you do it the biopsy might still come up negative, even if she has damage. The doc only samples a couple of spots. One of the complications of anesthesia is death. I personally would not subject a 6 year old to a biopsy. & there is also the chance that they perforate her intestine...

There is another option, Enterolab.com can test up to a year after you have gone gluten free. They also test for the gluten intolerant genes, or so they are labeled. Anyway they test for the whole range of genes, not just DQ2 & DQ8. This information does not go on your medical records & you do not need a doctor's prescription, you can order the test yourself.

If you have positive blood work, you have a diagnosis. & really that is enough on the records, I would not want to get any more on her records, if you can help it, no telling what problems with insurance companies that it might have in the future.

Also, since you have symptoms & are going to get tested, I think that you will also be positive... It is inherited,so...

Enterolab does not (and can not) diagnose Celiac. They diagnose gluten intolerance even if your daughter truly is Celiac.

[sugarsue]

Hello, it sounds to me as though, for certain (without seeing your test results) that your daughter either has celiac or non-celiac gluten intolerance. Either way, the treatment is the same with the gluten free diet. My daughter has been diagnosed with gluten intolerance. She may have celiac, but I don't have doctors that feel strongly in going further to try to find out for sure since they feel strongly that she should be gluten free. I was anxious to start the diet which we did right after her blood was drawn. I was not wanting to go through the biopsy so we chose not to. Still, I do wonder. It would be nice to know, although it would not change much right now.

Good luck with your decision on what to do and good luck!!

[dma]

Hi I am new here as well, Only one post so far and I am not sure if I have done that one correctly. My 6 year old daughter was recently diagnosed (June) with Celiac Disease after 5 years of issues with the abdominal area and low iron etc. We are very interested in learning from anyone who wishes to share stories/ tips on managing the issue of cross contamination. As well as learning how to be a little more creative for birthday parties and outings. We always leave the house with a cooler of food in the event we are delayed or wish to change our plans. We live in a small community and the only restaurant that will cater to our gluten free needs is McDonalds. (Fries). So needless to say we do not have the ability to treat her very often when it comes to dining out.

We are wondering about behavioural pattern changes. Has anyone experienced outbursts from their gluten-free child that are extremely out of character even while maintaining a gluten free diet?

Any advice or thoughts would be greatly appreciated.

Thanks

[sugarsue]

Hi I am new here as well, Only one post so far and I am not sure if I have done that one correctly. My 6 year old daughter was recently diagnosed (June) with Celiac Disease after 5 years of issues with the abdominal area and low iron etc. We are very interested in learning from anyone who wishes to share stories/ tips on managing the issue of cross contamination. As well as learning how to be a little more creative for birthday parties and outings. We always leave the house with a cooler of food in the event we are delayed or wish to change our plans. We live in a small community and the only restaurant that will cater to our gluten free needs is McDonalds. (Fries). So needless to say we do not have the ability to treat her very often when it comes to dining out.

We are wondering about behavioural pattern changes. Has anyone experienced outbursts from their gluten-free child that are extremely out of character even while maintaining a gluten free diet?

Any advice or thoughts would be greatly appreciated.

Thanks

Regarding unusual outbursts, my 6 yr old does not like me to talk about her to others while she can hear. The other day I was updating someone who we had not seen for a while and I was talking about her. She kept playing but said loudly and fairly rudely "I have ears you know, I can hear you talking, blah, blah, blah". I actually took this as a good sign. In the past she would have been climbing up my body, using her hands to turn my face away and cover my mouth but she would be whining and not saying anything. Now I just need to teach her some more manners, LOL!

What behavior are you experiencing?

[Cheri A]

My dd was also diagnosed at nearly 7 years old with a wheat allergy and possible celiac disease or gluten intolerance. Her blood testing came out inconclusive, with 4 markers positive. The allergist told us that if we wanted to definitive answer to get the biopsy done. By the time we reached this point, we were just desperate to make her feel better. She also has other food allergies, but for the previous two years had been intermittantly complaining of stomach pain throughout the day, went between constipation and diahrrea, and had begun vomitting. We decided not to have the biopsy done, and she went gluten free. She immediately started to feel better.

It has been a long road, but we will all help you learn to navigate the learning curve. I will admit that I cried for weeks, and I lived on the computer seeking out information. This is the most helpful website with the best people on it.

Whatever you decide to do about the testing will be what's right for your family. Trust your intinct.

[Cheri A]

Regarding unusual outbursts, my 6 yr old does not like me to talk about her to others while she can hear. The other day I was updating someone who we had not seen for a while and I was talking about her. She kept playing but said loudly and fairly rudely "I have ears you know, I can hear you talking, blah, blah, blah". I actually took this as a good sign. In the past she would have been climbing up my body, using her hands to turn my face away and cover my mouth but she would be whining and not saying anything. Now I just need to teach her some more manners, LOL!

What behavior are you experiencing?

Sue, this is the way my dd is still. Sometimes she will willing want to talk about it, and other times she doesn't want me to say anything more than necessary.

Dma, welcome to the board. Glad that you found us! I live in surburia where there are resources and restaurants around. We still don't eat out very often, and I carry food with us to any event. I usually carry a snack in my purse or her backpack wherever we go. You'll get used to it and so will your child. It's a huge learning curve. We can help you!

[fleckapo]

thanks so much for your responses! we have an appointment with a pediatric GI doctor on tuesday and she is scheduled for her biopsy on wednesday. i am a nervous wreck, but she seems okay with it. we have her on her regular diet which i hate (and she was hesitant as well). but it's sort of like her last hoorah before the official diagnosis. the GI doctor went over her bloodwork and said that it definitely looks like celiac, but that she is very conservative and needs to get the biopsy since she is so young.

i will update you next week on how things progress. again, thanks so much!