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Newly Diagnosis Daughter We Think!

DaniMom

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DaniMom Newbie
DaniMom
Posted

Hi

I'm new to the board and wanted to share my story...

After several scary months our 19 month old daughter was diagnosis with celiac disease or at least with a strong possiblity of it. Since she born it had always been a struggle to get her to eat. She was first diagnosised with Gerd and then when she was a year old she got a virus that put her in the hospital for over 1 week, shortly after that they put a G-tube in her stomach and at the time did an endoscopy. The results came back that her stomach was severly damaged. When we went back for a two week check up on the G tube she had went from 13lb to 11lb. We were immediatly admitted to the hospital and with plans to put a central line in her chest. The DR told us that anymore weight loss could have been deadly. Thankfully the central line worked and she gained 4 pounds in a 2 month period (she is now up to 18lbs ). They removed the line after two month now she just has the G-tube and gets 99% of her nutrution through it. We have started to introduce gluten free table food and it has gone over pretty good. Her blood tests have come back negative for celiac. The DR still has us on a gluten free diet because of the endoscopy results and celiac runs in the family. The DR still thinks that there is a chance that it is not celiac, she said the other two possiblities are severe milk intolerance or basically she got a very bad virus that did major damage to her gut. We have had almost every gentic test possible done and they all come back great. We also recently found out she has a hiatal hernia most likely due to the GERD. This little girl just can't catch a break. Amazingly through all of this she has continued to be a very happy and easy going little girl. Her development is slightly delayed but nothing to severe. She is at about a 15 month level. We have also been contemplating having our 5 year daughter tested for celiac with the knowledge that the older the child the more like to get an accurate test result, we figure that if she is positive it will pretty much confirm my 19m old diagnosis. It has been a very hard couple of months for us because we just don't know...even the DR's are stumped. This last week we told our GI specialist that we wanted to get a second opinion. Thankfully she was completely on board with the idea, (which I think is a sign of a great DR). The only reason I have struggled with the idea that it's celiac is because when this all started she was not eating much table food so we don't know how the little bit of gluten she would have had could have done so much damaged to her gut. Don't get me wrong I'm very thankfull that everything has come back negative genetic test wise but I just wish we could get a straight out answer of what is wrong with her.

Thanks for listening to my story, I think finding this board will be a resourecful tool for me and my family.

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one more mile Contributor
one more mile
Posted

Good luck and please do not give up no mater how frustrating this search can be. We tired all sorts of diets with my Kid until she was 21 and my illness was figured out. When she went on board with being Gluten free and vegetarian she is not ill. Neither of us have been doctor told we are celiac but If we both eat like one we do not get sick. I don't really care what you call it I just tried everything till something worked. Eventually you will figure it out.

Being negative for celiac really does not mean anything dozens of people on the board will tell you that They have had negative tests.

There are dozens of little understood food allergies, Rice makes me itch but I have been told for years that rice is a safe food for people with allergies.

You are the mom, Listen to your gut!!!!!!! It may help to keep a food and illness diary so that you can see patterns.

Now that we look back on it my child was always better during the end of summer when we would fest on veggies and when we were on the south beach diet. I could kick my self for missing that. but I am glad that we finely figured it out and can go on from here.

taweavmo3 Enthusiast
taweavmo3
Posted

Wow.....you guys have really been through the ringer! Just a thought....did you breastfeed? Gluten does end up in the breastmilk, so she would have been exposed from the beginning. I experienced this firsthand with my last baby girl. That is what prompted me to finally go gluten free, b/c she was reacting to dairy and gluten (also had nasty reflux until I cut both out of my diet).

Wish I had more advice :( Sounds like you got good advice from the doc to keep her gluten free, especially with Celiac in the family. Good luck with everything, this board is a wonderful resource!

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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