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Testing For 9 Month Old
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My son is 9 months old. He is breastfed and started cereals at 6 months old. He had gained weight at a steady rate until then and now in the last 3 months has gained less than 1 pound. Our pediatrician is positive it's celiac and we have had the blood work done. It has come back negative, which I understand is normal for babies and young children. Now the biopsy is going to be scheduled, which I'm okay with. However in the mean time I'm afraid that there may be something else wrong and we're wasting precious time. Did other parents go through this while you were waiting for a diagnosis? How long did it take before you had a diagnosis? It's been 3 weeks already and I'm just desparate for my baby to start getting bigger. Also did you worry that there was something wrong with your breast milk? My son nurses 5-6 times a day and he will just eat and eat and still does not seem satisfied. I try to feed him alot of food but then he spits up. My husband thinks I'm not feeding him enough, and should give him formula.

I'm getting a lot of information from this board and it has been very educational. I would appreciate any and all advice. Thanks.

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It may also be a dairy allergy. Have you tried eliminating dairy from your diet so that it is not passed through your milk to the baby?

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No, I have not tried to eliminate dairy from my diet. I had not thought about this as being a problem. Can a dairy allergy prevent a baby from gaining weight? His growth was perfect until the introduction of grains...I will have to look into this one more.

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I can tell you that my son started a broader diet when he was 8 months old, until then it was rice cereal and fruits and veggies. At 8 months he could pick things up and put them into his mouth to mash.. and I 'think' I might have started graham crackers... don't really remember. Anyways, his weight and height started to drop at that point. It was subtle at first... Didn't notice anything at the 12 months appt. At least, the doctor didn't say anything. But by the time he was 15 months old, he was really thinned out... needless to say he was in the 15% when he was in the 90%. In hindsight, going back and looking at his records, his weight and height started to gradually decrease after 8 months old.

He was an AVID breastfeeder... wanted to feed all the time. I think it made him feel better and that it didn't hurt his tummy.

You don't mention any other symptoms other than weight plateau... Does he wake up fussing and crying at night or from naps? Are his stools runny and liquidy, even after eating solids? Does he have lots of gas? A bloated 'beer' belly? Reflux?

He doesn't have to have any of these... but I am curious...

Good for you and your Ped. for seeing the warning signs early on... I wish we had figured it out sooner. His ped. never thought or mentioned celiac disease, they sent him for hormone deficiency testing and then concluded he might be lactose intolerant when the tests came back negative. My son was't diagnosed until he was 3 1/2 and was hospitalized for a severe intestinal 'mystery' flu that got worse when he ate wheat...

Mom in So. Calif.

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it sounds possible that it could be celiac disease or a milk allergy. but at such a young age son't be surprised if nothing comes back positive... Really your best bet would be to put him on a gluten-free diet and see if that cures the problem... Our specialist said that it is rare for a child to show positive for celiac disease under 18 months of age. Possible yes, but very rare. So we are waiting till our daughter is 18 months to test her...

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Hi Thanks for the replys. My son does have some other symptoms besides the weight. He has tons of gas, and his stools are mostly mushy/frothy but not watery and undigested. He has but has been described to me as the Ethopian look, big belly and super skinny everywhere else. He's quite fussy at meal times and never seems satisfied even after I think he's had a lot to eat. And yes he does have reflux but I think that it is improving. We are seeing out pedi doctor today and I will ask to look at some other reasons why the poor weight gain. The biopsy is still not booked and I'm so desparate to have some answers. This first year is so crucial for development......Would you go gluten-free and say forget about the testing or keep looking for answers?

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You might get a variety of responses.... if you are adamant about having a 'gold standard' diagnosis then I would demand a scheduled biopsy very soon. If your son does have an auto immune response to gluten and he continues to consume gluten, he is in jeopardy. IF anything is gonna show up, it has to be while he's consuming gluten. So you need to get your doctor on that ASAP... if gluten is poisoning him you need to know now!

If you and your doctor can live without the 'gold standard' proof, then I would suggest going gluten free (gluten-free) and seeing if there is improvement. If he starts growing and his symptoms improve then you will have your answer.

BUT, by all means DO NOT go gluten-free and THEN do a gluten challenge to obtain that "gold" seal of approval. At least not while he's so young. If you feel strongly about a biopsy proven diagnosis, then at least wait until he is old enough to communicate to you where and if he is hurting. It is horrible to watch a toddler who can't communicate his aches and pains to you in any other way than screaming, arching, crying...

Granted these are only my humble opinions as a mother of a gluten intolerant son. With my past experience with my son... if I were you, I would go gluten-free and see if the diet helped... I wouldn't seek a biopsy nor rely on the results to tell me if he was gluten intolerant or not.

Ultimately, you and your doctor will have to decide what you feel is in his best interest.

I am sure others may have differing opinions... :)

Good luck and God bless!

Priscilla

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From everything I've read on the subject, 9 months is simply too young to diagnose celiac.

richard

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I'm very new to this forum, but my 19 month old daughter has Celiac's (just diagnosed via blood test), but wanted to add a thought.

Have you considered the possibility of reflux (GIRD)? The spitting up/throwing up is classic in reflux, although in babies you usually see the reflux earlier in life and then it gets better. My son (now just over 3) had reflux as a baby that was controlled by medication and my daughter had reflux as well (they didn't have the classic spitting up issue, however) - we thought my daughters weight problem might be reflux related, as she hardly ate anything, but it turns out to be Celiac's (my dad has Celiac's). Reflux can cause similar problems as Celiac's.

Hope I didn't add to the jumble of things going around in your head too much. It is just something to keep in mind and mention to the doctor if the Celiac's is negative.

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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