Moms With Young Kids

[AmyandSabastian]

OK where do I start? Well I was told to contact the center of research for celiac disease's office for a little care packet they send if you ask for information, so I did. Well when I told her my story she asked if Sabastian has had a biopsy or blood work, I explained on just how smart these cajun doctors are and that he hasnt that just the responce to the gluten-free diet is all I really needed. She then said if I would have answered yes to the biopsy she wanted to see the results because who ever said he tested postive read it wrong she was that sure it was incorrect. Well she then told me that it was next to IMPOSSIBLE and yes she did use that word for Sab to have celiac disease. That the youngest reported case was 13 months. That if he should symtoms at birth that it wasnt celiac disease and gluten couldnt be passed throught breastmilk and oatmeal cereal IS NOT gluten!!! That she is sure he just has the milk protien enteropathy. And that is what is causing these symtoms again. I dont know what I am doing anymore. I thought I had the answer, he WAS doing so well. OMG please dont tell me I am at square one again. I dont know if I can do this all over again. She said it takes normally 6 to 9 months to develop something and mess up the villi before the pain and systoms can begin.

So my question, when did you little one that HAS had biopys and bllodwork to confirm start showing symtoms? Did you breastfeed or formula? What foods had gluten in them that they were eating? Is she right? I dont know what I am asking. She suggested that I start him on gluten again for heavens sake!!! This makes me sick to my stomach to even think about it. But what if he isnt? Which is a great thing and I am making him miss out on so much? And she said if it is the milk enteropathy that he will out grow this at the age of 2!!! What a blessing. I am full of mixed feelings again just as I was starting to feel good. What do I do?

[Guest jhmom]

Amy, I think my daughter started showing signs of gluten sensitvity when she was a baby, she cried all the time and was gassy. I had to put Karo syrup in her formaula and added mineral oil to her pear juice especially when she started drinking whole milk. She has always had tummy trouble that is why I went ahead and voted 0-3 months. However she was not diagnosed until she was 8 and that was through Enterolab.

[SofiEmiMom]

Did you say that Dr. Fine's office (Enterolab) told you that it's impossible that your baby has celiac disease?

[AmyandSabastian]

No it's the Center of Celiac Disease Research Center in Chicago. Oh and I was told NOT to got to Enterolab because no one will read there results and that they dont share the way the process the results. I dont know I am lost.

[tarnalberry]

That's why I have a problem with Enterolabs. But it doesn't mean they're wrong. I remain skeptical of their practice, but the dietary challenge is a test in and of itself. You can use their test if you like, of course.

They may well have believed that oatmeal didn't count do to the reports that it's safe, but that remains controversial for enough people that... well... it's controversial.

[NaomiR]

Amy,

My son, unoffically diagnosed due to inconclusive test results, began showing symptoms at 6 months of age. He was breastfed until he was a year old but never showed signs 'til he started infant oatmeal cereal.

He is now 25 months old and has only been gluten free for a short while. However, when we began eliminating gluten from his diet, he improved immediately. We still have yet to see changes in his mental understanding, but have seen great improvements with his bowels.

We recently had family visit and I decided to give him a wonderful birthday party. I gave him 1 tsp. of cake containing gluten. I did NOT have the strength at the time to focus on making a gluten free cake.....BIG mistake. My husband was at work when I did this and that night he commented on, "Look how swollen his stomach is." Oh.....I felt miserable for my little boy.

So, my basic advice is to go with your instinct. I know my kid has celiac's without an official diagnosis. Maybe you should talk with your friend who helped you figure out in the beginning what it might be that was bothering Sabastian. He seemed quite informed on the issue.

[chasesmom]

Hi Amy,

My son has shown signs of celiac disease since birth and no one can tell me otherwise. I was stirctly breastfeeding when at 4 months I found good info from a breastfeeding specialist (a board certified lactation consultant) via email and internet research. She advised me to go gluten-free and guess what? My son was cured. Now that he is 19 months old I play around with his diet to kind of test the waters but so far no luck. As long as he stays gluten-free he is healthy. My pediatician thinks I'm nuts I am sure (He wanted to do testing and I said no after posting my concerns here), but he agrees that as long as my son remains to grow steadily and hit the milestones a balanced gluten-free diet is ok. Bottomline, you know how to keep your kids at their best. I truly believe the Center you were seeking info from should expand their research. Good luck while you continue your research.

Colleen

[TrixieMom]

Amy

My son started with liquid bm at about 3 weeks - the symptoms of anemia and weight loss / failure to gain started after he started cereal. I breastfeed for 13 months but was not gluten-free. He was diagnosed via a biopsy. I'm glad he was diagnosed this way because the diet is strict and I wanted to be sure before adhering to it for life.

Trixie

[stomica]

Hey Amy! My 2 1/2 year old daughter has been undergoing testing for the past 9 months. Her symptoms were loose, foul stools 2-3 x day. She had the celiac panel done last February, which showed elevated IgA's and IgG's, though the other two (which are more specific) were negative. We've seen several docs, including two ped GI's, an excellent allergist and two pediatricians. Celiac has always been a possibility though we haven't confirmed it through biopsies. (She did have a colonoscopy which showed colitis, though we didn't have an upper endoscopy done.) Anyway, what it comes down to is it's possible to have a wheat intolerance. Your little one could exhibit the same signs as celiac disease, but it's something he would likely outgrow by age 4 or 5. My daughter had RAST tests and skin prick tests, which were both negative to wheat. (I guess those don't mean that much.) The allergist and ped GI both agreed that gluten is very difficult to digest so it could easily irritate someone's system. Our next step is to get another celiac panel to compare the numbers...if they've gone up, then it's likely celiac. If not, then it might just be a wheat intolerance. I don't mean to confuse you, but I just wanted to pass that along. By the way, my daughter also has a mild dairy allergy, which we're told she'll likely outgrow in another few years. Hope that helps a bit!

Sue

[AmyandSabastian]

Well I did it. I took him off his diet. It has been 5 days now. All bowels are fine, no bloated belly, not cranky as long as he is on motrin for teething. (2 came in last night!!!) I might be leaving this board. I have many mixed emotions but overall so happy. He is off of dairy thinking it might be the milk protien enteropathy. So far so good. He has ate his first chicken nugget!! He ate an animal cracker!! Its been bliss here. But I keep saying, "So far so good" I am like a hawk. The first anything I see and he is off until he can tell me mom my tummy hurts. Please pray this was a "phase" God I hope it was. Even the milk enteropathy will be over by the time he is 2. Thank you all for your support.

I on the other hand am getting the panel run for celiac disease Tuesday and for Rhemoid Athritis. Things dont look so hot for me.

[lesliewatts]

We used Prometheus Labs to diagnose our daughter. She was breastfed until 12mos. I introduced cereal at 4 mos, fruits and veggies at 5 mos. She started showing symptoms around 13 mos. We are all gluten-free (including 4 yr old brother) and I don't feel like we are missing alot. It is inconvienent, but we still eat really well.

[mat4mel]

Amy,

I totally know what you are going through. My dd has only had bloodwork and had positive IgG and IgA but that was the only testing she had before going gluten free. She had the ttg test done a couple of months after being gluten free (which could have caused a false negative), and it was negative.. but then they said that her total IgA is low (30).. which I don't understand, because she had a positive antigliadin IgA a few months ago. She doesn't tolerate milk very well, or several other things.. she is 2 1/2 yrs old. I have never heard that milk enteropathy went away by age 2. That could be right, but I have known so many children with dairy problems that lasted well after age 2. Anyway, I think we are going to have to face a gluten challenge in our near future.. because she has been gluten free/ dairy free for 3 months now but still having very loose bowels and not gaining weight like she should (she is only 22 lbs). They aren't as frequent as before but still not normal. Anyway, please keep us updated! You sound like such a good mom for researching things and taking control of his diet.

Mel

[mpeel]

I believe some children do outgrow a milk intolerance when it is developed early. Some do not. Then others do not even develop it or perhaps, shows signs of it until later. Also, many intolerances/allergies may change symptoms you show as you age or are off of it for a while. I am allergic to milk, diagnosed at 6 years old. I was told I outgrew it. As a child it cause severe respiratory problems/congestion. Once it was re-introduced, I did not suffer that congestion. However, it did affect me in other ways. I did not know this until I got PG the first time. Dairy caused vomitting. So, it was removed from my diet again. A lot of other "problems" I had been having since an early teen (when dairy was re-introduced), disappeared. My leg aches/growing pains, headaches, bloating, irritibility, etc. was gone. Now, whenever I have a glass of chocolate milk (I indulge sometimes), I get severe leg aches for days.

Neither of my girls can tolerate dairy, with different symptoms. My youngest is the only one tested for an allergy to it and it was negative. But, she still can't have it. So what did I prove by the test?

Mel, how long was your daughter suffering from diarrhea? I have heard, the longer the celiac goes untreated, the longer before the healing takes. This could explain the diarrhea still. I also found that I missed some stuff, like playdoh, Elmer's glue, things you do not think of. Sam started reacting once a week when we changed schools. Turns out once a week they play with playdoh. I never even considered it. I can't stand the stuff so it was not in my house.

[mat4mel]

Sorry I haven't replied sooner. My dd had diarrhea for 4 months before going gluten-free/CF. She has been gluten-free/CF for 4 months now. She does not play with play doh or glue. Sometimes she colors with crayola crayons, but I am pretty sure those are gluten-free.

Mel

[Aleshia]

hi, neither myself or any of my kids have been diagnosed yet but my baby (16 months) stopped gaining weight at 4 months old. the dr won't take it seriously though because I didn't take him for well child checks cause I wasn't having him vaccinated and he was still chubby. his weight just stopped going up. he was 10 lb 2 oz at birth and by 4 months he was 26 lbs. I started solids and his weight went down to 24 lb and then at 11 mo. was back up to 26 lb again. currently his weight is 28 lb 5 oz and the dr says because she doesn't have the record of his weight doing what it did that from 10lb 2oz at birth to 26 lb at 11 mo. and then to 28.5 lb at 16 mo. shows steady growth... its so frustrating! she says there is no need to test him for celiac as he is gaining weight. anyway, I voted for 3-6 months cause of that happening at 4 months when he started solids he was breastfed till 11 1/2 mo. and he seems to do fine on whole milk and did fine on formula too. he is a pretty picky eater though.

my other son is almost 4 and was breastfed till 5 months. he would always have really horrible diapers that would go clear down into the feet of his pajamas and up his back and come down his sleeves. he had trouble potty training and is almost completely potty trained now (YES!!) still has accidents with #2 (not for about 3 days now though) but wakes up dry in the morning. his stool is always very loose and if he has fiber (raisin bran, shredded wheat etc.) for breakfast its really gritty like sand. sometimes it smells like something died in his diaper or underwear!! horrible. he is increasingly moody and irritable and until he was 3 he wouldn't talk he would just whine about everything. at least now I can get him to stop and talk normally sometimes. so for him I would probably have voted 9-12 mo. even thouh he had the bulky diapers at such a young age. he was such a good baby! he was sleeping through the night by 6 weeks and sleeping 12-15 hrs a night and then like 3hr naps during the day with about an hour of awake time in between... although would that be considered fatigue? or lethargy? the dr and nurses in newzealand (where we lived at the time) didn't seem to think it was a problem and I was grateful for it cause my daughter was only 16 mo. when he was born and I was totally overwhelmed.

my daughter is 5 and doesn't seem to have any symptoms other than she gets tummy aches... they seem to be very convenient though (when you ask her to do something like clean her room) she was very colicky as a baby though. so I don't know we'll have to see how my testing goes and then the boys and if we have it I will get her tested too