18 M Dd Might Have Celiac. Have Questions

[jen2be2]

Just a little background info on us and my family. Then I will get to the questions.

I was dignosed with IBS with D after a lower GI camera went you know where when I was in my early 20's . No bio. was preformed( gotta love Keiser). Since then, I have been dealing with what I have been assuming is IBS with D almost every day. with some days being worse than others and when I am pregnant~ I never have an episode.

Fastforward several years later and I now am a mom to 4 wonderful kids.

The oldest having been born with a coratation of the aeorta(sp?) and suffered from heart failure for the first 7 months of life( her heart is fine now). She is currently 6 years old and has high cholesterol and also has a spastic bladder that we are trying to get retrained with meds. She also had her adnoids and toncils removed last year. This has been a blessing for her. She now no longer suffers from frequent sinus infections or sleep apneia.

2nd DD is pretty healthy. She did have her adnoids removed and ear tubes placed last year and has been doing pretty well.

DS got RSV 2x within his first year of life and now suffers from cronic asthma and sinus infections. After seeing many specialists and not being happy with the medical treatments( dailypreventitive inhaled steroids, nose spray steriods, singular( when he tested - to allergies) and abuterol when he had attacks) I got in touch with a trusted herbalist and got him on specific herbs and he has been so much better. He also recently had his adonids removed and that has helped out as well.

My baby, who just turned 18 months is the one that I am on this board for. She was born during the 36th week. She was healthy and perky. She was dignosed with slight refulx and was not put on meds for it as it was not too bad. Her symptoms of reflux dissapeared by the time she was 9 months old.

Several months ago, I noticed that her belly started getting bigger than it had been before. At that same time our family was going though a diet change as my DS needed to cut back on regular milk. So we were trying Soy and rice milk in addition to organic milk. She had been doing well with the new diet for around a month. Then one day, she just barfed out of nowhere. SHe did this several times over the next couple of days. So we thought it might be the rice milk and we cut that out. Then she was fine for about a week. Then the pattern started again, so we cut the soy milk out and then the problem stopped again. So we thought~ problem solved.

Then the size of her tummy continued to grow. We started to get a little concerned, but we were not too worried as she was eating well and did not appear to be in any discomfort. We took out pictures of me as a kid with my big belly and we were all joking at how much we looked alike. We thought it was wihin the rage of being normal.

Then about 2 weeks later, she got the flu on Friday. By Sunday, she was so ill that her little feet turned blue. So off I went to the ER. While we were there, I asked the DR to check out her tummy to see if there was something wrong. They ran many blood tests( no, I do not know what they were for, but I was told they were testing her liver and white blood counts) and did ab. xrays. The final result of the ER visit was that she had the flu and that her tummy was large due to gas and having D associated with the flu and to give her Mylicon drops.

OK. So I did that for a month. I did not notice any changes at all. A month after we went to the ER, DD had her 18 month check up. I told the PED about the ER experience, the Mylicon and that DD did not seem to put back on the weight from when she had been sick( She had also developed a resp. infection right after she got over the flu and the day we brought her in for her well check, she started getting a cold).

Well, my DD weighed 19 lbs 2 oz at 32 in long. She was in the 0% for weight and 57% for length. They dignosed her with FTT and a very large ab. They made arrangements for her to meet with a ped GI specialist on this coming Monday.

Prior to her belly becoming inlarged, at 1 year she weighed 22 lbs.

Since Tuesday, DD has had a decreased apptite, and what she does eat~ she is not keeping down for long periods of time. She has also started having unconsolable screaming fits just before she pukes(it just happens 1-2x a day). Our Ped sent us to the ER last night and they basically told us that after running more lab work to check for liver, kidney and gall bladder issues and x rays that her bloodwork came back normal and that her organs looked fine, no signs of blockage. THey digonsed her the same as the DR., FTT and inlarged ab.. The DR told us that the ped GI is the perfect person to see and they can help us .

Both the Ped and the ER Doc thought that she *might* have Celiac.

OK~ so here come my big list of questions.

Did any of you have kids that were this bad off when they were waiting to be dignosed?

How long did it take to get scheduled for the bio and how long did it take to get the results back?

We are highly concerned that she is not eating much and not able to keep much food down. Combine this with her already low weight, would you ask the Dr to put an IV nutrition until we can get the results back?

If she does turn out to be + for Ceilac, do you get everyone tested?

TIA~

[Guest nini]

oh my you've been through a lot haven't you... I would get everyone tested regardless of her results and then even if the results are negative, TRY THE DIET... if it helps then you have an answer... non celiac gluten intolerance , or pre celiac gluten intolerance seems to be more common than proven celiac (which is just verifying that the villi are atrophied), but gluten intolerance may be a precursor to celiac and therefore this is why I say regardless of test results, try the diet, and it would be easier if the whole family goes gluten-free during this trial, and give it at least 3 months...

but that's just my opinion... My daughter was pretty sick before we put her on the gluten-free diet after her blood tests came back negative... I had been positively dx'ed a few months earlier. My daughter is now a very healthy happy 6 1/2 year old... and she loves the gluten free diet... she still remembers how she felt on gluten because she was 3 at the time, and she remembers that it made her tummy hurt, made her vomit and have diarrhea, she had violent emotional outbursts and didn't sleep through the night. She had the pot belly, no butt, skinny arms and legs, recurrent tonsillitis and ear infections (that went away after going gluten-free) She was also dx'ed failure to thrive, GERD, hypoglycemia and anemia... The pediatric gi had me feeding her pediasure shakes (which I don't know if they are gluten-free or not) and told me to feed her more whole wheat... Her pediatrician agreed with me to try the diet and she was amazed at the very quick and miraculous turnabout in my daughter's health.

I wish you lots of luck and feel free to e-mail me if you want at nisla@comcast.net

[mommida]

Tests for a patient under 24 months are not very accurate. Make sure a FULL celiac panel has been tested for. The endoscopy with biopsy is hit or miss. How many biopsies is the doctor going to take? There is genetic testing available. I don't believe every gene associated with celiac disease has been identified, in fact I believe Columbia University is still doing a study to find at least one more gene. Insurance companies are not good about covering genetic testing. A lot of people suggest Enterolab, but most doctors will not count their tests as credible. The gluten free diet and the body's reaction to it, is a valid test. I would try it no matter what any test says.

L.

[azmom3]

You might also want to read up on eosinophilic esophagitis. My 26 month old was just diagnosed with this after a year of problems. His symptoms were failure to thrive, (17 pounds at 1 year and 20 pounds 12 ounces at 2 years), constipation, asthma, chronic sinus infections, and hives (which got under pretty good control after being put on zyrtec). The doctor initially thought it was celiac, until we had allergy testing done (after vomiting from milk). We discovered that not only was he allergic to milk, but almost everything we tested him for. Up until we did the endoscopy, both our allergist and GI dr. thought it could be either celiac or EE. I definitely agree though to try the gluten-free diet to see if you have any results, but I highly recommend checking into EE and just seeing if it sounds like a possibility as it needs to be treated differently. This board is amazing, so you're in the right place. There is a wealth of knowledge here...be prepared to learn a lot! Good luck!

[wifeandmomofceliac]

My daughter would roll on the floor and scream while holding her belly (age one to almost two) before going gluten free. Her pediatrician (who had been out on his own medical leave that whole time) was told that we had tried the BRAT diet (lots of toast and Cheerios, yikes) over and over during the past 9 months, and just seemed to get worse everytime. "There is something wrong with her! Please help!" So he told me to put her on his "crazy diet" for 3 days and call him back. We did, she showed amazing improvement. He said keep her on the gluten free diet 6 weeks, and bring her back (unless she relapses before then). When we went back, the results of that trial diet were all he needed to say she is gluten-intolerant. That was 6 years ago. She is happy and healthy, now, and through all this we figured out that her dad and brother are also gluten intolerant. We do not know if they have celiac or not. We don't care. All we need to know is that they are healthy as long as they follow the diet.

I reiterate the recommendation to try the diet. I like the suggestion that the whole family try it. I have yet to talk to anyone that tried the diet, and did not feel better off gluten.

Good luck.

Michelle

[Nikki2003]

Just checking to see how things went. And I hope she is feeling better.

celina

[jen2be2]

Thank you to all of you that have replied and thank you for sharing your stories.

I find it amazing that there are so many people out here that are suffering and this is the first time that I have ever heard of Celiac.

We did meet with the GI Ped today. He was quite nice. He told us right off the bat that she was not doing well( we knew that). He sent us for the blood work today to test for Celiac. It should be back before the end of the week. Until we get the results, he just wants to make sure that Shaylin is having 3 wet diapers in 24 hours. He told us that he would have liked to admit her to the hospitial today, but there are so many cases of the kids that are already there for GI problems getting RSV that he wants to hold off if we can.

If it turns out to be + for Celiac, he wants to do the Bio. for conformation and to get in there to see if anything else is going on as well. If it turns out not to be Celiac, she will be hosptialized and fed through a tube until they can figure out what is going on.

We are to keep her on a regular diet until we see if she tests + for Celiac or not.

He prescribed Prevacid to help her not puke and culturelle.

I will give you all an update as soon as anything new arises.

Thank you all for your support.

Jen

[CarlaB]

I wish you luck! If it's not celiac, try the gluten-free diet and see if it helps. It helps me some, but it's not my only problem. I was sick for 30 years, mostly intermittenly, but now I'm beginning to realize that my "normal" is not the same as everyone else's! It took me till last week to finally get a diagnosis (Lyme Disease). So, if it's not celiac, if the gluten-free diet does not resolve all of her (and YOUR) symptoms, keep looking and educating yourself.