Hi Mamas! Just looking for a little support...
I have gone through a lot in the past year. Left my horrible, abusive ex in Dec. of 2012 and have been trying to get on my feet since then. Moved in with family for a while and that went horribly wrong. After a stint of homelessness I got into a wonderful program for single Mamas and have managed to get my own home, a job and lots of resources and counseling for me and my kids. That is a very, very condensed version of the story.
My kids have always been small. Me and ex are both small, so I thought they'd just be small. Well, my three youngest are too small and have been losing weight recently despite eating well. My ex was extremely anti-medical care of any kind so I could never get my concerns addressed. Now that I'm on my own I have been getting them medical care and just recently took my 3 youngest to a GI Dr. I have 2 siblings with celiac so I pushed for that test and my 2 and 3 year old came back positive. They want to biopsy to confirm diagnosis, but I am pretty certain they have it.
Me and my other 2 kids have not been tested and I am hoping to make that happen soon.
Just wondering if anyone else is in a similar boat with more than one kid have celiac and how you cope? My younger sister was diagnosed 6-7 years ago and has spent all those years coming up with wonderful recipes so that will be a huge help.
I am just a little overwhelmed... I am a single working Mama and... it is just a lot to deal with! But I am thrilled to have answers for at least these two kiddos. The Dr. thinks my youngest may have reflux (I'm wondering about GERD, it really fits her issues) so I feel like we are on our way to solutions and that makes me happy. I just hope this adjustment period is pretty smooth.
Not totally sure what I am asking for, but thanks for bearing with me!
If the blood work came back positive, you do NOT need biopsy to confirm. That was considered gold standard diagnostic criteria 50 years ago, before today's sophisticated bloodwork was available. A biopsy will tell you nothing new; you already know that gluten is an issue, you just don't know how extensive the intestinal damage is. Is it worth knocking your child out for an invasive procedure to find out, when the end result is the same? No matter what, your kids should be off gluten if the bloodwork indicates a problem with gluten.
As far as I can tell, the biopsy will only be helpful to your doctor's bank account.
You might consider a second opinion if the doctor is insistent on biopsy.
Have you joined celiac.com's forums? Lots of knowledgable parents of celiacs there, lots of information.
Oh, and reflux is a very common symptom of celiac. It was the first symptom I ever had.
Best of luck, mama!
Thanks for the responses ladies!
The kids had an appt. with their ped. yesterday (not the diagnosing GI Dr.). Fortunately all three have gained a little weight. My 1 year old (the one with possible reflux but not celiac) had high levels of alkaline phosphotase which she said could mean low vit. d so she drew blood for that.
I really don't want my 2 and 3 y/o to be biopsied. The doc says there are conditions other than celiac that can cause the test to come back positive and that they have to biopsy to confirm diagnosis. Given my family history, I think it is safe to say they have celiac.
The biopsy is not scheduled yet but hopefully it will be soon and we can be on to the next stage. With my job it is hard to take more days off to get a start fresh with a new Doctor and get a second opinion, so I will just stick with their current doctors. I am in Rainbow Babies and Children and I do feel comfortable with them.
I completely agree regarding the snack/convenience food. My sister has many wonderful GF recipes that I will dip into.
I will check out celiac.com. Thanks!!
2 and 3 years old? And the doctor says that he must biopsy to rule out other possibilities?
Please, please, PLEASE get a second opinion if you can. If you can't, please delay the biopsy.
Unless the doctor has a damn good reason to consider another cause for positive bloodwork, I fear he is lying.
Biopsies for celiac are considered extremely unreliable in toddlers. They generally haven't had long enough gluten exposure to cause enough visibile damage to the intestines. The biopsy generally entails getting 3-4 tiny samples, maybe 1/16-1/8" each. I'm not sure how long a toddler's intestines are, but an adult generally has around 22 FEET of intestines. 4 tiny samples, from 22 FEET of intestines, where celiac damage is patchy, and often invisible to the naked eye--guess what, that means that if the doctor happens to biopsy UNDAMAGED areas, he will tell you that your child doesn't have celiac after all.
What happens to most people is, they are told they don't have celiac, so they eat gluten for several more years--doing lots of damage to themselves in the process--and eventually go to another doctor because they are feeling worse and worse. The new doctor orders another endoscopy/biopsy, and finds extensive celiac damage, proving that they had it all along.
I'd like to know what on earth your doctor think your children may have that can cause positive blood work for celiac, and why he isn't trying to rule out whatever THAT condition is, rather than putting your children through a risky invasive procedure (that also happens to be quite expensive).
There is no way I'd let a doctor do an endoscopy/biopsy on my child unless there was no other way to diagnose my child. And if you already have a tentative diagnosis of celiac, and if dietary response is any confirmation, there is simply no good reason to put a child at ANY risk, just for a fishing expedition for the doctor.
Sorry, but this surgery-happy way of practicing medicine really upsets me, and it's all too common these days.
FTR, we nearly fell for this kind of thinking several years ago, when we were told the dentist needed to knock out our 18-month-old to do extensive reconstruction of BABY teeth that she said were decaying.
We got a second opinion, The teeth weren't decaying, they were stained from the antibiotics and iron that I had to take when I was pregnant. He never had any trouble with those teeth, and the second dentist told us, even if he DID have trouble, he would just recommend just pulling them, because they were BABYT TEETH.
A year later, I was told that I had a major infection under the gumline of one of my teeth, and it needed to be pulled immediately. I held off, and got a second opinion (because I had absolutely no symptoms!), and lo and behold, there was no infection.
Both of these dentists seemed like really, really nice people, and had popular practices. Oh, and in both cases, insurance would have approved the procedures and paid for them.
Hope this gives you some more info: http://drrodneyford.com/extra/documents/236-no-gold-standard.html
Coeliac disease is patchy. Villous atrophy, the hallmark of celiac disease, is patchy in the duodenum (Lee et al, 2005). This makes the biopsy of the small bowel a little unreliable. Random biopsy, even of normal-appearing mucosa is necessary for the diagnosis of celiac disease. Thus at least 4 to 6 biopsy pieces need to be taken and examined
Gluten sensitivity has been shown to be associated with ‘minimal’ mucosal changes which cannot be seen with conventional light microscopy (Sarbati et al, 2003).
In the next few years, blood tests (particularly the DGP tests) will take over the endoscopy and we will see the end of the endoscopy to diagnose celiac disease.
Thanks for the info. I feel like I am backed into a corner. My kids have issues that should have been addressed years ago but thanks to their father they were neglected medically. The doctors know all of my kids history and I feel like if I start standing up to doctors it may not go well. Idk, it is a tough spot to be in and I am trying to find my balance.
I will address my concerns with the GI doctor, who is coordinating the biopsy. My kids' pediatrician is not an expert in this and she's the one who told me that there could be other conditions that would cause a + blood test. I know it is celiac and she knows it is but it seems like they are worried about covering themselves. No matter what the results of further testing are I know my kids have celiac and the appropriate dietary changes will be made.
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