I Need Help

[scaredparent]

I have a 15 mo old son that they think has celiac disease. I am reading other profiles and it sounds just like all of your kids. I was seeing that it is almost impossible to diagnois befor 18 mo. My son has had trouble since he started on cereral at 3 mo old. Up until that age he was gaining weight just fine and then he has slowed way down. He had the lab work done yesterday and a biopsy scheduled for Nov 3 and also a colonoscopy and a dumping sereies. Should I have the test done now or wait till he is 18 mo old. I was also woundering if any of you have other kids I have 5 total children and do you make them all go the diet also. And how do you every get to go out to eat. Help I am so scared of all of this HELLLLP

[Mom22]

I can't answer on your concern about how early a child can be tested as both our children were diagnosed this year. Our daughter is 4 and our son is 9. Our son was the one that was having problems, had bloodwork, biopsy, etc and was diagnosed with celiac disease. Because of the genetic link, we had blood work done on our daughter (who exhibited no symtoms that we were aware of), which showed elevated levels of IGG, IGA and TTG and were actually double of those of our son. Within a 1 week period, our son's biopsy was positive and our daughter's blood work showed concern. It was quite an overwhelming week. Thus, she had biopsy, which was positive. My husband is in process of being diagnosed or if he just has the genetic makeup for the possiblity of it. He is currently doctoring with Dr. Fasano at the University of MD. I know when our son was diagnosed, it was very overwhelming and as a mother understand the concern that you have for your children. My advice would be to wait on your son's results before you put the entire family on a gluten free diet, but also, if you wish to pursue testing for the other children, they need to be consuming gluten until they have a biopsy. As far as going out to eat, we did that on a weekly basis prior to the diagnosis of celiac. We do not go out to eat very often anymore and requires alot of planning. If we do go out, it is McDonald's cheesburger happy meal with no bun, FF, soda and hot fudge sundae for dessert. It is definately a change of lifestyle, but after 6 months of gluten free, it seems second hand and don't feel overwhelmed. Good luck! Mom 2 2

[3boyzmom]

Just wanted to give you some encouragement. I am a mother of 4 and, I have a son who is definitely gluten intolerant, as for the other 3...???

We might have been able to diagnose our son at 15 months if I or the doctor we were seeing at the time had any clue about Celiac disease. The telltale symptoms, for my son, at that age were:

loss of weight and height (went from being in the 80% to the 15%)

frequent loose stools (I thought it was from lactose intolerance)

bloated belly (thought IT was from gas from lactose intolerance)

clingy, whiny moody behavior (would wake up from afternoon naps VERY upset)

For more of Open Original Shared Link, you can read the post I have over at Braintalk.

It is possible to detect an intolerance to gluten at that age... as I have encountered many who have. Whether or not they are successful at finding the patch in the small intestines that has the damage and give you a diagnosis of Celiac disease is unsure. From what I understand the damage can be patchy and not visible to the naked eye, therefore it can easily be missed in an endoscopy/biopsy.

I would recommend having your other children tested via the blood work. Elevated IgG would indicate a gluten intolerance... elevated IgA with IgG would indicate that there is possible damage from the gluten intolerance and possible celiac disease.

Going out to eat is a risky venture... specially when you have a little one who can't tell you whether or not they've been 'glutenned.' My son is 4 years old now, and we try to only go to restaurants that we know to have gluten-free stuff... we ask at our favorite establishments and then determine from there... it's tough... the chance of cross-contamination is high... the price you pay for eating out.

My best advice for you is to NOT to try to just replace gluten stuff with non-gluten stuff. Try to make a diet change into whole natural foods. It will be better for your whole family. Fixing dinners that are not from a box or can is better anyways. Crockpot cooking is great. There are tons of things that can be done with chicken, and beef in a crockpot that is gluten free. Remember, potaotes and rice are still in, along with fruits and veggies! The only thing that is good looking for a suitable replacement for is pasta. The things that are nice for replacing for occasional treats, is cookies, cakes and such.

I wish you luck and if you have any questions and concerns, just post 'em! There are tons of moms, dads and families on these boards who are happy to offer up their advice and opinions.

God bless,

(Personal disclaimer: I am NOT a doctor, nor do I play one on t.v.! I am just a mother of a gluten intolerant child who has read and chatted with others in the same boat. Please feel free to challenge me or point me towards any research and information, I'm always searching!)

Priscilla

"Cleaning your house while your kids are still growing is like shoveling the walk before it stops snowing." --Phyllis Diller

SAHM to 3 beautiful boys and one adorable girl

Kyle - 6

Matthew - 4 (Gluten Free since 11/03)

Andrew - 2 (Gluten Free since 7/04)

Abigail - 7 months (staying gluten-free until ?)

My hands are full, but my heart is not!