Need Advice On Sick 2 Yr Old, Ttg Positive

[shelbysmom]

Hey, I am hoping for some answers. My 2 1/2 year old daughter has had chronic bowel issues most of her life. Since about 6 months, she has had chronic constipation issues, alternating mushy diapers. She is sick all of the time. In her short life she has had RSV, Bronchitis, Croup, Strep twice, multiple ear infections, continuous coughs/colds, and horrible stomach viruses (one lasting 10 days, one 15 when the rest of the family had it for a day). She has been diagnosed with Reactive Airway Disease recently. She has become much more irritable over time. She is complaining of tummy aches all of the time, and has bloating every day now. At this time, she is having anywhere from 3 to 6 stools a day, some formed, some mushy. She is hungry all of the time, and is begging for food nonstop. She has been 24 pounds for what seems like forever. With this last stomach virus, I took her to the ER on day 12 of sickness. They admitted her to the hospital and kept her for 5 days. She had multiple stool samples to test for bacteria/parasites. She also had a Celiac panel ordered by the pediatric GI she saw at the hospital. The panel came back positive for Celiac, so the GI set up a scope. The scope and biopsy came back negative. Before the scope, the GI was pretty convinced that she had Celiac, but now who knows. He says it is possible for the TTG to come back positive but not have Celiac??? He does not think I should put her on a Gluten Free diet yet, as she does not have an official diagnosis! Can anyone please offer any similar stories, advice, or help on this matter. I just want my child better.

[Squirrelflight]

Sorry to hear your child is having so much trouble. Personally I would do a gluten free diet. It can't hurt and it may help so what have you got to lose by trying it?

[lillysmama08]

Hey, I am hoping for some answers. My 2 1/2 year old daughter has had chronic bowel issues most of her life. Since about 6 months, she has had chronic constipation issues, alternating mushy diapers. She is sick all of the time. In her short life she has had RSV, Bronchitis, Croup, Strep twice, multiple ear infections, continuous coughs/colds, and horrible stomach viruses (one lasting 10 days, one 15 when the rest of the family had it for a day). She has been diagnosed with Reactive Airway Disease recently. She has become much more irritable over time. She is complaining of tummy aches all of the time, and has bloating every day now. At this time, she is having anywhere from 3 to 6 stools a day, some formed, some mushy. She is hungry all of the time, and is begging for food nonstop. She has been 24 pounds for what seems like forever. With this last stomach virus, I took her to the ER on day 12 of sickness. They admitted her to the hospital and kept her for 5 days. She had multiple stool samples to test for bacteria/parasites. She also had a Celiac panel ordered by the pediatric GI she saw at the hospital. The panel came back positive for Celiac, so the GI set up a scope. The scope and biopsy came back negative. Before the scope, the GI was pretty convinced that she had Celiac, but now who knows. He says it is possible for the TTG to come back positive but not have Celiac??? He does not think I should put her on a Gluten Free diet yet, as she does not have an official diagnosis! Can anyone please offer any similar stories, advice, or help on this matter. I just want my child better.

I would do the gluten free diet! Good Luck!!

[nmlove]

Can you get a 2nd opinion? Here's what my son's GI doc said he'd do if his biopsy was negative (it wasn't). First, do genetic test to rule out celiac. If that was "+" then it was most likely celiac, just gut not damaged enough. If "-", not celiac but something's causing the blood work to be + so he'd have to go gluten-free anyway. I don't know names of diagnoses but he said there were a few things besides celiac that could cause + blood work. Either way, sounds like your daughter is headed for gluten-free.

[shelbysmom]

He did mention the genetic test as the next step, but said most ins does not cover. I wonder if it is necessary to spend the money, when the blood work is positive, and the symptoms are right on with Celiac. I am sure we will go ahead with whatever he recommends, I just hate keeping the gluten in her diet in the meantime. He does not want us to remove it yet, as it could skew future tests, but it is really difficult for me to keep giving it to her if it can be making her sick. I have autoimmune Thyroid disease, which is another reason Celiac is really adding up for her. She is more likely to have an autoimmunce disease since I have one. I think I am going to be tested for Celiac as well. Is it possible that her biopsy came back negative because she is so young and new into the disease, or would damage occur this soon on in the disease? I know in my heart that something is wrong, and really want to fix it. I agree that I believe that we are headed for a gluten free life, I just wish I knew exactly what was going on!

[nmlove]

He did mention the genetic test as the next step, but said most ins does not cover. I wonder if it is necessary to spend the money, when the blood work is positive, and the symptoms are right on with Celiac. I am sure we will go ahead with whatever he recommends, I just hate keeping the gluten in her diet in the meantime. He does not want us to remove it yet, as it could skew future tests, but it is really difficult for me to keep giving it to her if it can be making her sick. I have autoimmune Thyroid disease, which is another reason Celiac is really adding up for her. She is more likely to have an autoimmunce disease since I have one. I think I am going to be tested for Celiac as well. Is it possible that her biopsy came back negative because she is so young and new into the disease, or would damage occur this soon on in the disease? I know in my heart that something is wrong, and really want to fix it. I agree that I believe that we are headed for a gluten free life, I just wish I knew exactly what was going on!

I completely understand! It's totally a personal decision. But if you are going to do more tests she must stay on gluten. It will be much harder to put her back on later if needed. The biopsy could be negative because of her age (her gut's not as damaged as someone who's been suffering years and years undiagnosed and the biopsy just missed it). The good thing? You're catching this now. I know it's hard but if it were me, I'd stick with gluten for the relative short time period it takes to figure it out. I'd hate to be all wishy-washy if she doesn't respond to the diet as expected. I'm in that boat with my 2 year old and that's with an older brother diagnosed positive with both blood and biopsy! He seems to be more sensitive. Talk with the doctor. I'm sure he'll understand that you want to get going as soon as possible. Good luck!

[shelbysmom]

After talking with the GI doc again, I was able to determine exactly which blood work he requested. Of the blood work that he did, her TTG was slightly high positve, and her EMA was positive. Based on what I have read, EMA is Celiac specific, and has virtually 100% accuracy. He is still saying that because the biopsy was negative, he thinks that the blood work could be "false positive" due to being too soon out of infection???? I can't wrap my brain around this, as EVERYTHING I have read has stated that there is no false positive EMA! He wants me to keep her on Gluten, and retest her blood in May. In the meantime, he says I can get the genetic test done. I am having a really hard time deciding whether or not to keep gluten in her diet, as she is soooo symptomatic. Her behavior just keeps getting worse. Her tantrums are getting much more severe. She is hitting, biting, screaming, and just insane at some instances. She is waking up screaming at night. This all on top of the increased stools, tummy aches, bloated abdomen, lack of weight gain, darkness under her eyes, thin chest and arms,constant illness, etc. She is not a miserablly ill child. She plays and has energy. She has bad moments, yes, but she is overall a playful 2 year old. I know that her doc is one of the best, but I feel like he is just as baffled as I am. It is sooo rare for the EMA to be positive, and the biopsy be so negative. He says her intestines look PERFECT! I am so stuck in this middle, maybe, diagnosis. It is really starting to drive me insane! If I put her on a gluten free diet, how long before her May blood work does she have to be back on Gluten?

[Tatum]

After talking with the GI doc again, I was able to determine exactly which blood work he requested. Of the blood work that he did, her TTG was slightly high positve, and her EMA was positive. Based on what I have read, EMA is Celiac specific, and has virtually 100% accuracy. He is still saying that because the biopsy was negative, he thinks that the blood work could be "false positive" due to being too soon out of infection???? I can't wrap my brain around this, as EVERYTHING I have read has stated that there is no false positive EMA! He wants me to keep her on Gluten, and retest her blood in May. In the meantime, he says I can get the genetic test done. I am having a really hard time deciding whether or not to keep gluten in her diet, as she is soooo symptomatic. Her behavior just keeps getting worse. Her tantrums are getting much more severe. She is hitting, biting, screaming, and just insane at some instances. She is waking up screaming at night. This all on top of the increased stools, tummy aches, bloated abdomen, lack of weight gain, darkness under her eyes, thin chest and arms,constant illness, etc. She is not a miserablly ill child. She plays and has energy. She has bad moments, yes, but she is overall a playful 2 year old. I know that her doc is one of the best, but I feel like he is just as baffled as I am. It is sooo rare for the EMA to be positive, and the biopsy be so negative. He says her intestines look PERFECT! I am so stuck in this middle, maybe, diagnosis. It is really starting to drive me insane! If I put her on a gluten free diet, how long before her May blood work does she have to be back on Gluten?

Wow, I could have written this word for word!!! I know exactly what you are going through... my 16 month old is so happy & plays fine so doctors are like "well she doesn't seem sick, so she must be fine!" and then all the symptoms you just described are there for her too.

She is waking up screaming at night. This all on top of the increased stools, tummy aches, bloated abdomen, lack of weight gain, darkness under her eyes, thin chest and arms,constant illness, etc.

I hope we both get some answers soon! Poor girls

[seezee]

Try another doctor that knows more about celiac and ask some more questions about the biopsy results. Here is some information to look at.

Open Original Shared Link

[tarnalberry]

My opinion only, but for a child that young, with tests that are indicating she is celiac, I would take her gluten free. The biopsy is NOT the gold standard docs claim it to be - it depends on how many samples are taken from exactly where and exactly what standards are used for classifying the damage to the villi. (Some labs will see "mild blunting" and NOT conclude celiac, but mild blunting, in combination with positive blood tests, is highly HIGHLY suggestive.)

If you need a formal diagnosis, however, I would redo the blood tests. Is there any reason he wants to wait four months to do it, though? (Any reason to suspect she'll be "healthy" that long?)

[shayesmom]

After talking with the GI doc again, I was able to determine exactly which blood work he requested. Of the blood work that he did, her TTG was slightly high positve, and her EMA was positive. Based on what I have read, EMA is Celiac specific, and has virtually 100% accuracy. He is still saying that because the biopsy was negative, he thinks that the blood work could be "false positive" due to being too soon out of infection???? I can't wrap my brain around this, as EVERYTHING I have read has stated that there is no false positive EMA! He wants me to keep her on Gluten, and retest her blood in May. In the meantime, he says I can get the genetic test done. I am having a really hard time deciding whether or not to keep gluten in her diet, as she is soooo symptomatic. Her behavior just keeps getting worse. Her tantrums are getting much more severe. She is hitting, biting, screaming, and just insane at some instances. She is waking up screaming at night. This all on top of the increased stools, tummy aches, bloated abdomen, lack of weight gain, darkness under her eyes, thin chest and arms,constant illness, etc. She is not a miserablly ill child. She plays and has energy. She has bad moments, yes, but she is overall a playful 2 year old. I know that her doc is one of the best, but I feel like he is just as baffled as I am. It is sooo rare for the EMA to be positive, and the biopsy be so negative. He says her intestines look PERFECT! I am so stuck in this middle, maybe, diagnosis. It is really starting to drive me insane! If I put her on a gluten free diet, how long before her May blood work does she have to be back on Gluten?

This is the scenario that is absolutely dreadful to deal with. Postive blood work and negative biopsy. What to do?

I don't know how much you're willing to spend on a genetic test, but you can get the home kits from both University of Chicago as well as through Enterolab. The results may be the "tipping" factor in getting your GI to confirm the diagnosis without more biopsies.

It's hard to give advice in a situation like this. For me, the most important thing was to get my daughter well. We had negative bloodwork and no biopsy. We did enlist the assistance of the pedi GI and our family doctor and monitored the changes a gluten-free diet had on a weekly basis. The results were overwhelmingly positive and we got a diagnosis of gluten enteropathy (which can be Celiac or non-Celiac but basically changes nothing in terms of treatment). There is no doubt that my daughter is extremely sensitive to gluten. And now, more and more family members are being diagnosed through bloodwork and biopsy. So I take that as my daughter being the "canary in the coal mine".

That being said, I can tell you that in the beginnings of the diet, I naively thought that we could always put our daughter back on a gluten diet in order to confirm the disease later on in life. After seeing the difference the diet has made, I no longer think that. In truth, I think that I cried for a week when I realized I had been unwittingly poisoning my daughter with those foods. We will NOT be going back on the road to "gold standard" diagnosis unless my daughter decides it's necessary. And I really don't see that ever happening as she has horrific reactions to even a crumb of gluten.

You need to really take an inventory of what your beliefs are as well as who you are when deciding which route to take. This is your child. And you need to KNOW that what you're doing is in her best interest. Your decision should reflect that because either way, the decisions you make now will come back to challenge you through the next few years. Know your strengths and know your weaknesses. It will all come together in the end and you'll be a better mom for it.

Good luck!

[shelbysmom]

Thanks to everyone for all of your thoughtful responses. I went and had Shelby's blood drawn this morning for the genetic test, and now I will have to wait...I have been messing around with a gluten free diet, and have noticed that when I sneak gluten in, she immediately complains of a tummy ache!!! I feel like I know deep down that Shelby has Celiacs, but I am trying to trust the doctor, as he is supposed to be one of the best. When we get the results of the gene test, I feel I will know for sure if she is positive. That would be too many pieces of the puzzle fitting together, to deny a diagnosis. I have never felt so angry and frustrated in all of my life with all of the confusing, conflicting results. I am trying to calm my nerves and ride this out, as I am now aware that this process is going to be a long and tedious one.