What were the signs?

Kate - posted on 10/25/2008 ( 24 moms have responded )

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My husband has celiac, and we are going to avoid anything with gluten until my son is much older (he's 4 months old now). What are the signs I should be looking for when we do give my son something with gluten?

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User - posted on 11/16/2008

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I love this I have learned so much from reading these posts. We kind of fell into this diagnosis and are actually going to the Dr on Wed. My daughter has had loose stool for over a year, she is four. She had no other symptoms so we thought. She does have the belly but because she was adopted from China at 11 months the Dr never thought anything of it. When we saw the Dr back in Jan he thought for sure it was lactose very common in asian people apparently. It wasn't. When we saw him in Aug he was concerned because of her lack of weight gain. She also had behavior that while they weren't red flags they were not normal, tantrums that lasted a little to long and were a little out of control, and obsessive behavior that were just on the edge of normal. With an adopted child it could be any number of things and we did not want to have her behaviorally tested yet (which the Dr gave as a option) I had been doing my own research and just decided that I was going to try gluten free and it has worked. She is doing better in school, she is more focused, she is talking more and more receptive to her speech therapy, her stool is normal for the first time. It has been amazing!!!

Koy - posted on 11/12/2008

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My daughter was 7 years old when I finallly had done enough research on my own to figure out what was a matter with her. There was really no signs until about a year before she was diagnosed. She was always a skinny small baby, but I was also very thin and small as a child. She seemed to have constipation problems as a baby and the doctors told me this was normal. I never thought much about it. She did always have the pot belly. She had tiny bird legs and arms with a belly. She is my child that is so strong minded and stubborn, she hated mornings and I dreaded them cuz it was always a fight. I could tell her the sky was blue and she would want to disagree with me, it was horrible. I prayed it was a phase and she would grow out of it. We noticed the dark circles under her eyes, but just assumed she was tired. A year ago my whole family ended up with giardia, and things just spiraled from there. She never seemed to get better, even after 3 doses of antibotics. She had either hard stoles or really runny stools and her behavior was enough to make a person crazy. I just new there was something else going on, so my family doctor finally referred us to a university hospital where they dealt more with kids, and that is when we finally figured it all out. She has been on a GF diet since the end of January and has done awesome. The black circles are gone, the pot belly is gone, the horrible fits and behaviors are gone, and my sweet little girl has finally returned. She has gained about 10 pounds since January. There is no family history and we have no idea why, but are just thankful it has been taken care of. Thank goodness she is not extreme and can cheat once in awhile. She has been really good at deciding if cheating is really worth it. We struggled with what to eat at first but she has been opne to try all kinds of new foods and have found things she loves.

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Alison - posted on 12/03/2008

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Celiac definitely runs in families my dad and 2 of his cousins are celiacs and also my 9 yr old son Jack was diagnosed last year after a 8 yr battle convincing the doctor something was wrong. We introduced gluten when Jack was around 6 months old and almost immediately his weight started to drop. As they get older, i find grumpiness a factor i always know if Jack has cheated on his diet. I must point out however that loose, pale stools are not always the main sympton. Jack suffered with severe constipation with only intermittent diarrhoea. Please if u decide to get yr child tested for celiac either by blood test or biopsy you must feed them plenty of gluten even if it makes them ill otherwise the tests will come back either inconclusive or as a false negative. Hope this helps xx

Lisa - posted on 12/02/2008

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Kathy-I don't want this to come off the wrong way but with the statistical information that Celiac disease is 1 in 133 americans but 99% are misdiagnosed meaning that 99% of americans with celiac disease don't even know that they have it. American DRs have no idea how to diagnose Celiac Disease unless someone has GI problems. I would consider it a blessing that you are able to find out that your daughter has it and I would never speculate that she may not have it. It is such a common autoimmune disorder as well as hereditary that I would be safe to assume that your other kids that had reflux have it as well. Along with the other family members that are suffering from reflux. There is so much other information to research about celiac disease, it is not all about GI problems. I know that doing the diet suck but your daughter will thank you in the long run. I believe I was born with it and the DR told my mom to stop breastfeeding me and I have always been small and I have scoliosis which gives me a great deal of pain. If I had been diagnosed as a young child I may not have such a bad back. I would have had the opportunity to grow properly.

Görel - posted on 11/23/2008

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Hi Leanne,

you cannot test for CD before you have introduced gluten. And IF, I say IF your son develops CD, it can happen at any age. Don¨t worry too much, and do not blame yourself if it happens.



Here in Sweden we are recomended to introduce gluten while still breastfeeding. The previous recomendatons where just like the ones that seem to be in the US now - to wait until they are a year old. This late introduction led to an EPIDEMIC development of CD in Sweden - here at least 3/100 children born in the mid 90ies have already developed CD. It might be something to think about...

Leanne - posted on 11/23/2008

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Hi Kristin,

My husband was diagnosed while in his 20's as well. We have a 9 month old and I'm concerned about CD. Our ped told us not to introduce gluten til he's at least 1. I hate to give him gluten if he's going to have a reaction but at least we know what to look for. Can they test before gluten is introduced?

Kristin - posted on 11/22/2008

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Hi Kathy and Kate,
I was diagnosed with celiac when I was in my 20s. I was always in the 99th percentile in terms of height as a kid and did not have any symptoms until I got older. So it is definitely possible to have celiac without having any of the typical symptoms. I have a two month old and I'm also concerned that she might have celiac as well. The doctor told us to avoid introducing any gluten into her diet until she can be tested.

User - posted on 11/22/2008

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Kathy,

My daughter had no symptoms to speak of until last Aug. when the loose stool began. She was three and had always been on the samll side but no one was concerned. I thought the loose stool was due to potty training issues/order. It wasn't until she slipped off her growth curve (she has never actually been on the chart) that the Dr became concerned even.

Görel - posted on 11/20/2008

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Kathy,
How true, it is scary but managable. It's not like an allergy where you have to be really afraid of misstakes.
Let's hope that your daughter heals, that it was just because of the other illensses. My mum, who works at a blood lab, showed me an article in one of their magazines. Apperantly, research about the positive consequenses of adding zink and vitamin C to your diet when you catch servere colds or have a flu could prevent CD. It has something to do with the mucus-thing in all the intestants, that it is boosted and less likely to not protect. I'll see if I can find antyting about it in english and post it.
If the research is correct, it makes sense to give some extra zink and vitamin C to the rest of the family when they are ill, to prevent them from developing CD.

Kathy - posted on 11/19/2008

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Gorel, the GI doctor, the original one who made the quick diagnosis, did agree that my daughter Kacey should be retested in December. If the atrophy in the biopsy was from celiac, it will still be there and worse. If it was from a virus, a significant rota-type virus, then the inflammation should be gone. She and my other two daughters had a very severe virus all on the same weekend at the same time two weeks before her endoscopy. That's why we did the endoscopy in the first place. She was born with severe reflux and when an illness appears, it triggers a flare up with her reflux, even on daily meds and she loses her voice completely. We hadn't done an endoscopy since May of 07 so the GI doc thought it was time to repeat. Her biopsies in her esophagus and stomach came back normal, praise God, but her duodenum showed the inflammation. Her blood tests came back negative, but we were told that doesn't mean much. He and another doctor in Dallas both agree that the virus, if severe enough, and if the endoscopy was taken at just the "right" or "wrong" time could present as celiac type inflammation. So we watch and wait. But whatever the case, whatever our path, we are ready. God has a plan and He will walk us through it in His time. But it doesn't hurt to hope for a miracle. Thanks for sharing your thoughts and good luck to all of us in this journey with this scary but manageable disease.

Görel - posted on 11/17/2008

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Hi Kate,
if she's been diagonsed after having had a biopsy, it's probably correct. If your daughter does not have IgA-antibodies, the bloodtest will be negative but the biopsy will be positive. Ask if they tested her for lack in IgA. My son does not have IgA (wich 1 in 600 hasn't), and we had a hard time finding out why he was so ill. It is more common among people with IgA-dificiency [spelling?] to develop celiac.
Also, if she's older than 2, the signs become more and more hard to get. Maybe she just sleeps for an hour longer than she would on gluten free diet. It might not "show" until she's a teen, with later development and such.
There could of course also be that the intestines has been affected by something else, and that they will heal. That's why they usually re-test unclear diagnoses after a year or so. Sometimes you're told to provoke (under medical supervision) with gluten, to see how the body reacts.

Kathy - posted on 11/16/2008

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I am so proud that you moms are finding answers for your kids. I am also grateful your kids are feeling better. But it still leaves me scratching my head. My daughter has none of those symptoms - none, except for the reflux, which is because of a loose sphincter muscle, which my 9 year old has, also. But the dudodenum biopsy came back with villus blunting in her last endoscopy for her reflux. So again, any ideas on anything that could cause inflammation if it's not celiac? We just don't look, act, feel like you all describe, and I want to make sure we are walking down the right path. We are going to a new GI doc this week in Dallas for 2nd opinion. What types of docs do you all go to for your kiddos? Thanks for any advice. We are all so stumped around here. I need to post a picture of her so you can see what I mean. Our only connection is that my husband's family has Irish lineage and apparently my biological family does, too. (I am adopted, so I have no known family history.) Help...

Görel - posted on 11/16/2008

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Hi Nancy,
my son also gets "PMS" if he gets anyting contaminated (like swedish meatballs ;-). If he eats something larger, like a bun, he gets terrible stomachace and throws up for 3-4 hours straight.
They don't screen all swedish kids, but thay have done studies in different cities for a decade or so, all with the same result. However, with the new recomendations fewer seems to become gluten intolerant. At least not as toddlers...

Nancy - posted on 11/16/2008

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Erin,
Are the doctors going to check your daughter for Celiac? Just make sure she is eating gluten if they do. My daughter was also very "emotional" before she was diagnosed. Now, if we suspect any contamination with gluten, it seems to correlate to her being what I call "PMSy". Horrible mood swings and crying. Good luck at the doctors!

Nancy - posted on 11/16/2008

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Hi Gorel,
Do they do routine screening on all children in Sweden? I have also read and been told to introduce gluten while breastfeeding. The thoughts are that the breast milk will boost the immune system when the gluten is introduced. The tricky part is getting the gluten in before they wean themselves..lol I did do this with my son and so far, so good.

Görel - posted on 11/16/2008

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Hi there everyone!
Just stepping in from Sweden. My 7-year-old son has celiac decease. Here we are recomended to introduce gluten while breastfeeding. In the 90-ies the recomendations were to wait until you stopped nursing, wich led to an epidemic in diagnosed celiacs. About 3 per 100 kids born in the early 90-ies in Sweden has celiac desease when they do screenings in the different age groups.
Which are the recomendations in you countries?

Leanne - posted on 11/11/2008

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I will just have to wait and see I suppose. I'm not giving him gluten until after he's 1. His 9 month appt is the end of this month so I will bring up my concerns with his ped then. I'm keeping my fingers crossed! Thanx for your response!

Nancy - posted on 11/11/2008

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Leanne,
I think the "allergy eyes" could just be another symptom that may or may not mean anything. I don't know it they would test him for allergies unless he had other symptoms and if he ends up having Celiac, that won't show up on an allergy test anyway. I know how hard it is to be "looking" for signs of Celiac. Every time my son or non Celiac daughter has loose, strange looking poop, I panic. God forbid it was just something they ate that day. lol. I do wonder if that worrying will ever go away.

Leanne - posted on 11/11/2008

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Hi, My husband has Celiac Disease. Our ped told us not to introduce gluten to our son until after 1 yr of age (andrew is 8 months old). I was reading this thread and one post caught my eye. Nancy mentioned the "allergy eyes". My son has that. His eyes get real pink on the upper and lower lid almost like he's tired and it happens alot! He hasn't had anything with gluten. His 9 month appt is the end of this month....will they run an allergy test this early??? He's on formula (enfamil lipil) and takes solids. He is a great sleeper but I wouldn't say he over sleeps: 11-12 hrs at night and about 3-4 hrs of naps/day.

Nancy - posted on 11/09/2008

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Hi Kate,
Since my daughter was diagnosed with Celiac, we were definitely on the look out with my son. I did so much research on when to introduce gluten. I never did find a consensus. The answer we went with was to introduce gluten while he was still breastfeeding to help his immune system. We were told by our doctor that if he is going to have Celiac, then it was better that it was triggered and diagnosed as early as possible. I was a wreck the first time I gave him gluten. I felt like I was poisoning him! He is 4 years old now and so far he shows no signs and symptoms of Celiac. His bloodwork has also come back clean. As far as symptoms go, I guess I would look for the typical GI symptoms...Soft, mucousy, pale, stools, belly pain, drop in weight, irritability.

Nancy - posted on 11/09/2008

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Hi Kathy,
Just to clarify....was the small bowel biopsied specifically for Celiac? As far as the symptoms go, from what I understand, many Celiacs show no symptoms, but the damage to the small bowel is still occurring. My daughter was 2 1/2 when she was diagnosed. She had obvious signs (amazingly half the Pediatricians we saw ignored them). But it was after she was diagnosed and gluten free that we figured out other things. She always drank milk b/c it evidently soothed her stomach. She never once told us her belly hurt, but her EGD and biopsies were a mess. Kids do have a different perception of discomfort/pain. I just had a friend who is an adult diagnosed and he had absolutely no symptoms. He was slightly anemic and he doctor was very aggressive and checked for Celiac. Boy, was he shocked. Strange about the blood work. Was she still ingesting gluten when the biopsy and bloodwork were done? Also, did they check her IgA to make sure she is not deficient? That would alter her other antibody tests.
That's good that you are getting a second opinion. Sounds like you really have a lot of questions that hopefully a different GI doc can answer. Keep us updated!

Kathy - posted on 11/07/2008

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Here's my question for you celiac moms. My daughter is 3 and was born with reflux. My husband's side of the family has this in almost every adult on that side, so it was not a surprise, not to mention my oldest daughter was diagnosed at 6. The baby has silent reflux, which is just movement in the acid up to her airway, but she never vomits. We did an endoscopy in September and to our shock, her biopsy in the small intestine came back with inflammation. The GI doctor tried to diagnose her with celiac immediately. But here's the thing...she has zero symptoms. She is in the 95th percentile in height and weight, no distended tummy, no diarrhea, no skin issues, no fatigue, no unusual fussiness (she is 3...), no abdominal cramping, and of course, no vomiting without cause, like a virus or something the other girls brought home from school! We are seeking a second opinion, because there is zero family history not to mention, she had an endoscopy a year ago and no inflammation was present then and she has tested negative in the antibody test each time. Any thoughts? Do you know if inflammation can be caused from other food allergies - I have always believed that corn was a trigger for her reflux based on her experience with it.

Nancy - posted on 10/28/2008

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Wow, Tina, your son does have a strong reaction. It is not as obvious with my 9 year old daughter, which makes it difficult to identify hidden sources. I say that she gets "PMSy". When she was diagnosed at 2 1/2, she was so sick. She had most of the classic signs. She had the pot belly, was always tired, had a scab on her nose that would not heal, stick arms, only drank milk, loose stools that no diaper in the world could hold, and pale. She also had "allergy eyes" which is how we finally diagnosed the Celiac. We had her at a Cardiologist b/c of a family history and b/c we had no idea what else to do. He pointed out the eyes and asked if we had her allergy tested yet. I also had a wonderful Pediatrician that totally trusts in motherly instinct and was not going to stop until we found an answer. So far, my other children have blood tested negative and we just continue to watch for signs.

Tina - posted on 10/27/2008

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My first son was diagnosed positive, and my doctor was aware of a genetic test available, so we had our second tested at age 11 months, he is currently 14 months old, and has still had no gluten. I want to wait until he can tell me how he's feeling. My oldest was diagnosed at age 15 months, he had lost weight rapidly, lots of loose stools, slower gross motor skills, 'poochy' tummy with skinny arms/legs, the biggest kicker was vomitting every other day for a month. The vomitting is what brought us in, no known family history of Celiac. I didn't even know that his stools were bad, I had nothing to compare to, we caught it very early on, as he started solids at 9 months, before that it was just fruits/veggies/rice cereal. We've been GF since June 2007 and he's done terrific, he has had 2 relapses at daycare, eating just 1 cracker or 'regular' noodle and has vomitted for 5+ hours, pretty severe I've heard, but it is and will continue to be a learning curve. Good luck....

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