Symptoms?

[MomtoAlly]

Hi all!

I'm really beginning to wonder if my DD has Celiac's. Some background (and sorry if this gets really long! I'm just really nervous about her).

I'm a T1 diabetic, so Celiacs is always in the back of my mind.

DD was a big baby (my blood sugars were perfect, so that wasn't the reason. DH and I were both big babies). She was 10lbs 4.8 oz. She was a very colicy baby with a suspected Milk Protein Allergy. She was on Nutramigen until she was 6 mnths old. After that she could only tolerate Good Start or Bright Beginnings (Enfamil and Similac were both WAY too gassy for her). She had reflux and was on Prilosec from 2 months until 9 months.

She was never a big drinker. Good days she only had 15oz, bad days we were lucky to get 8oz in her. She continually dropped weight %'s at each Dr's visit. We were able to hang on to about 10% for a few months when she started foods (I made all her baby food, Ped felt she'd get more nutrients). At around 9 months though, she started refusing baby foods and wanted to self feed. Her weight started plummeting again around then (corresponds to when she actually started grains). At her 12 month appt she had fallen to the 5th % and was around 18 pounds . We had bloodwork done then to test for Celiac and CF and the Ped claimed that it came back "normal" (no numbers given).

She's now almost 17 months (will be on April 17th) and is 19.5 pounds and now at around 3% for weight. I don't know how, but she's got a pot-belly, but no other visible fat on her. She has had her fair share of illnesses this winter and several ear infections (she goes on eating strikes during them), but they really don't explain her lack of weight gain. She still hasn't doubled her birth weight!

I think she's pretty happy. She doesn't seem to have digestive issues (although her stools are usually clay like), no skin issues, or anything else.

I might be grasping at straws, but I'm worried that we're missing something. She's just sooo skinny. You can see her ribcage and backbones.

[momandgirls]

I don't have any good answers for you...but, have you taken her to a gastroenterologist? Your pediatrician should be able to give you a referral and a recommendation. Do you have a Children's Hospital nearby? They would have several GIs on staff. Just a suggestion...

[MomtoAlly]

Thanks!

We're going back for a followup with her Ped in a couple of weeks and I was going to request a referral. I might just call and see if we can get that going before her weight check.

[momandgirls]

I think that's what I'd do - sometimes it takes weeks to get an appointment and I'd probably get it set up as soon as I could. Good luck!

[jendamiano]

Hi! I am new to this forum but I do have a child much like yours. She had ear infections very often, also developed asthma very badly. I did take her to an allergist because the pediatrician was treating the ear infections, but they would just keep coming back. The tests came back that she was allergic to wheat and we have not had her officially tested for celiac but as soon as we took the gluten out of her diet she has never had another ear infection and no more asthma at all. I am also taking two of my other children this week to be tested for celiac. They are both very small for their age (5%) and have various other health issues. It would definately be worth finding a good allergist and talking to them or a gastro doctor also.

Jennifer

[MomtoAlly]

I got an appt for Wends morning. Luckily the call before me was a cancellation, so I took that appt. If not they weren't booking until the end of May

Hoping for some answers soon!

[key]

Sarah,

Yeah, it is good you are getting to see a peds. GI. They will probably want to do a biopsy of her small intestine. This will show if their is damage to her intestines from the gluten. Anyway, the blood tests in small children are not accurate. My son had major diarhea before we found out, but we just took him off gluten and he improved dramatically. THey diagnosed him based on just the changes in him. He was a picky eater too until he started feeling better and now he loves to eat! It is wonderful. Pale stools can be typical of celiac too. Anyway, you will hopefully find some answers and be sure they don't just blow you off. THere is nothing like "mom's intuition"!

Take care,

Monica

[Nic]

Hi, your child sounds very much like mine in the beginning. He was actually 8.1 lbs. at birth but was 2 wks early (my younger son was 10.8 lbs. ). My oldest also coundn't handle the milk protiens and was put on nutramigen until he was 12 months. He had severe reflux and he would projectile vomit with each bottle. He handled food ok but by the time he was 12 months he started with the severe constipation. His weight has always been ok but while he is on the thin side, he always had the pot belly. When he was 4, his constipation became so severe that he wouldn't have a bowel movement in a week or longer. That is when they tested him for Celiac. So I agree with everyone else, have them run the test.

Nicole

[MomtoAlly]

Well we FINALLY got the results of her bloodwork back (lab screwed it up the 1st time).

Her IgA came back "normal", but her IgG came back at 74 (normal <20). Her GI said that that was "signficantly" high. He wants to retest her in 6 weeks. We'll run the bloodwork again mid-July and we go back for another appt Aug 3rd.

I feel like I'm stuck in complete limbo right now. Thankfully she's gained enough of weight lately to get back on the charts, so she's considered at the very lowest end of "normal" weight and her day to day weight gain is "normal", absolute lowest end of normal, but normal. Of course, "enough" of weight, has been 1 pound in 6 months. She JUST doubled her birth weight at a little less then 19 months.

Do you know of any reason why her IgG would be soo high? How much gluten should she eat each day to trigger the tests as either pos or neg (and how do I calm my nerves giving her it? )

Thanks!

Sarah

[TCA]

did they run an Ig A deficience test? Many people with celiac have an IgA deficiency which skews the test results. The did not run this on my son either. He had a slightly eleveated IgA and a very high IgG with the Ttg being normal. They did a biopsy (2) and did not find celiac, but did find irritation. He had the classic symptoms, though. My intuition kept saying it was celiac, though. I then found out that the testing on kids under 5 is often false negatives because the damage is so patchy. I took him off gluten, even though the drs. said it wouldn't make any difference and the results were miraculous. The ped GI now thinks it's celiac because of his drastic improvement. If you feel that a gluten free diet might help her, why not try it? If she doesn't improve, you can move on to other solutions. If it does work, though, you'll be so happy. My son was one of those picky eaters and barely touched his food, now he eats like a little horse all day long. It's such a relief to see the change. Good luck and trust your instincts!

[MomtoAlly]

They didn't run the IgA deficiency and I don't think they're running it on the next batch either....It looks like he's just redoing the AGA and Anti-Endomysial antibody. They haven't run the tTG at all.

[TCA]

They didn't run the IgA deficiency and I don't think they're running it on the next batch either....It looks like he's just redoing the AGA and Anti-Endomysial antibody. They haven't run the tTG at all.

Sounds like they're not doing complete testing then. IgA is specific for celiac disease, but the IgG shows irritation in the body. The TtG is representative of villous atrophy, and I forget about the endomysial. They should run all 4 of these antibodies plus the IgA deficiency to get a complete picture of what is going on. It's also a good idea to do a CBC to test for anemia. If I were you, I would demand they do the complete bloodwork ASAP. I know it's hard to tell drs. how to do their jobs, but sometimes we have to demand the best for our kids. Trust me, after having a daughter who's about to have her 2nd open heart surgery, I recognize the importance of arguing with drs. if neccessary!

[MomtoAlly]

I'm gonna have to check the lab slip when I get home tonight. I'll call on Tues if its not on there.

Its so hard right now because her only real "signs" are her lack of weight gain, clay-like stools and recurrent ear infections. She doesn't eat a lot, and because she's so young, she can't tell me if she's not eating because she knows it will hurt her (which is what happened with formula with her - she refused all bottles pretty much except what she needed to survive because I'm guessing she associated them with her horrible reflux).

She's generally a happy kid, I just want to get to the bottom of her weight issues and ear infections. I was really hopeful that we had ruled out a gluten issue until her IgG came back so high.

She had a complete metobolic done with the celiac disease panel, complete with fat absorption and that all came back normal. Of course, then I got to googling, and found that her intestine could be not damamged enough (or working well enough in spots) that the fat absorption would look "normal".

I dunno, some days I feel like I'm grasping at straws. I know my DH would never go with putting her on a gluten-free diet if the GI doesn't reccomend it. He'll think I'm just being neurotic. I might have my endo test me though for it. I don't have many stomach issues, but I've got thyroid problems, depression, fatigue (MAJOR) and sleep issues.

Thanks!!

[Smunkeemom]

My daugther had the "pot belly" the doctors kept saying "oh, she's fine, she's not skinny look at that belly" then I pointed out to one that the kids in Africa on the news have the big belly's too. She weighed 11lbs at 11 months (down from 24 at 9 months)

You might have to do what I did (which wasn't my most "proper moment" but probably my "best mom moment") and refuse to leave the hospital until someone figures out what's wrong. I did that and within 30 min. I had the chief of GI, the chief of Surgery, and the chief of Pediatrics at my beck and call. I should have done it weeks before I did though, she wouldn't have eventually gotten down to 7lbs (less than her birth weight)

Throw a huge fit if all else fails.

If you don't get to the "fit" stage, you should at the very least sit down with your doctor and say "I need you to do the COMPLETE celiac blood panel and a complete blood count, I want to see the actual results, and I will take them to another doctor for advice if I need to"

Always, always, always get the actual results, even if you think you can't read them, you can find someone who will. I have been sick for 2 years (longer than that but really sick for 2 years) because I believed the doctor when they said my tests were "normal" when in real life they were pos. for celiac.