6 replies to this topic

[siouxsie]

WHat are the chances my son has celiac sprue as I was undiaganosed and untreated all through his pregnancy? He certainly suffered w/ my malabsorbtion since he only weighed 5lbs 11oz (my daughter was born 9lbs 4 oz 6 yrs. ago)and has grown quite fast in the past four months to catch up to normal baby weight. I'm happily nursing and his pediatrician supports my doing so but has suggested he start baby cereal in addition to nursing to ensure he is getting enough iron and calcium. Now that I'm starting my son on cereal I'm really nervous since the rice binds him and I'm not sure what to look for as a reaction to other grains when I introduce them. I've only recently found out that I have celiac sprue and I'm just learning to identify my own subtle signs of intolerance. The obvious gas, bloating and diahrea are easy to spot----it's the itchy skin, slight rash, nose sores, joint pain and cramps that I never realized had to do w/ my diet. Any suggestions on what to look for in my baby? Any ideas of how common it is for parents to have children w/ it? Does it matter if you're gluten-free or not during a pregnancy? Do both parents have to have it to pass it on to children. Thanks for any answers.


Suzanne

[DLayman]

I have seen everywhere that if you haveceliac in the family that the babyshould stay gluten free for at least six months if not more!

Doesn't gerber make a rice cereal with bananas? If not they are generally mild enough to add or use on their own..or pears are also mild on the system to help with contipation. Also what cereal are you using? Many of them use barley malt or barley malt flour in the rice cereal so they are not gluten free, so read labels!!!!! Celiac can make a child constipated too..

As far as a correlation between your son's birth weight and you not being gluten-free it could be just your malsorption effecting his weight..

Celiac is genetic 10-30% of first degreerelatives of a person with celiac generally have it, and a person is 30-40% more likely to have it when a person in their family has it. If both parents have it that likelyhood probably doubles..

Some signs to look for in him.. not sleeping.. or only sleeping short periods of time, irratibility,spitting up including projectile spitting up.. then the odvious signs you mentioned.

[Connie R-E]

Here are a feeeeeew symptoms of a gluten consuming celiac child:

In children:
Failure to thrive
Irritability
Paleness
Fretfulness
Inability to concentrate
Emotional withdrawal or excessive dependence
Nausea
Pale, malodorous, bulky stools
Frequent, foamy diarrhea
Wasted buttocks
Anorexia
Malnutrition:
*With protuberant abdomen (with or without painful bloating)
*Muscle wasting of buttocks, thighs, and proximal arms
*With or without diarrhea
And, colic

Of course, there are more...
You could start a food/symptom diary for him to keep a record of how new foods affect him. That really will tell you a lot! Remember it can take hours or days for symptoms to appear--that's why it works so well to write it all down.

Good luck!
Connie

[Connie R-E]

Oh, and don't beat yourself up over not being gluten-free during your pregnancy!
Since it's genetic, he either had it, or not, before he was even born!
You're doing the best you can for him now, and that is what is important.

Connie

[siouxsie]

Thank you for your replies. It's so comforting to have people who can give answers and quiet my fears and guilt. So far my son has not shown any signs, thank God, and hopefully he will not have celiac. I've been sticking w/ Beech Nut Naturals because as far as I can see on the labels, there's nothing but rice flour for the rice cereal and oat flour for the oatmeal. It's so tough reading labels and knowing what exactly every indgredient really is. Knowing what to look for helps me feel less fearful but I hate waiting to see if there's a negative reaction to something i eat or he eats. Thanks again.
Suzanne

[WCabelus]

Hi Suzanne,

It's certainly possible your son (and daughter) could have sprue as it is a genetic disease. I doubt your pregnancy has caused your baby to have celiac, he either has it or he doesn't. I was pregnant while on a gluten diet for three of my four children. Two of those three children are confirmed celiac. We found out by doing antibody and gene tests for celiac. While all carry the gene for celiac, one son does not currently have any antibodies to gluten suggesting he is not celiac...yet. My last child was not tested because I have never fed him any gluten. He is now 18 months old and was born after three of us were diagnosed and on a gluten free diet anyway.

I chose not to feed him gluten because, as a celiac myself, I know that the damage can be horrible. Sure, the villous damage may heal but what about secondary damages? I have trouble with gastritis because my stomach sphincters are all messed up from years of undiagnosed celiac. I have to be on acid medicine my enire life or risk hemmorhagic gastritis and damage to my esophagus. My celiac children had trouble with chronic ear infections leading to scarring of their ear drums and possible hearing loss (hopefully temporarily). My four year old (who has been gluten free for two years ) still has malabsorption as well as acid reflux as determined by intestinal biopsy. Also, exposure to gluten (if you are a celiac) may trigger other autoimmune conditions. Is it worth taking the chance? Also, so many people are asymptomatic with celiac, it's tough to know whether your baby will even show symptoms. My four year old suffered as a baby before his diagnosis. He was cranky and bloated and it made life very hard. My other celiac child was asymptomatic in infantcy. In other words, you won't necessarily know if your baby is a celiac until after damages show up. He could be asymptomatic and grow poorly, or have ear infections, or reflux. Everyone reacts differently.

My plan is to keep my child gluten-free until I can gene test him (with four children, it's hard to get to the Celiac Center for testing) or better yet, find someone to perform a rectal gluten challenge. The RGC is a test that can be done on a gluten free person. A tissue sample from the rectum is infused with gluten under a microscope and if lymphocyes flood the area, voila, that person is a celiac. No need to feed anyone gluten. The trouble is, it's experimental still and hard to find someone who can/will do it. If the gene test comes back positive, it doesn't mean my child has celiac, it only means he has the ability to get it. If it's negative, there's basically no way he can ever develop the disease and then I can safely feed him a gluten diet with no worries. In the meantime, I can cross my fingers and hope a different test will come along which will help me know if my son is a celiac before he ingests gluten. If the gene test is positive and I can't find someone for the RGC, at age three I will feed him gluten and test him after six months. If he comes up negative, like my oldest son, I will retest every two years to make sure it hasn't triggered in the meantime.

For my son, I have to think he's not missing much on a gluten-free diet. Wheat can kill. I can't see how it can be good for anyone if it can do devastating things to so many people. Birthday and pizza parties are tricky but I'll take the trickiness over having a sickly child anyday.

Good luck. I hope all my rambling helped.

Winnie :

[Connie R-E]

Winnie,

Good for you! I think that was a wonderful explanation!

I'm pregnant right now (30 weeks) and my unborn child will probably never eat gluten. We dicovered celiac disease when our first was only 3 months old (luckily!) and have been gluten-free for 6 years.

If you ever need to have a test done, I understand that Enterolab
http://www.enterolab...ld_Be_Screened/
has a non-invasive stool test.

Keep up the good eating!

Connie