Re: Re: Celiac signs in infancy

January 26, 2006

and Jill's email reminded me of something I didn't put in the email I sent earlier....

My daughter also ran very high fevers in infancy....always 105 or so. Twice I ran her to the hospital because I couldn't get her fever to go down after bathing and alternating aspirin/tylenol. I doubt this is related to Celiac..but I thought I would mention it. I always thought it odd that her temp would go so high.

Also...as in the email below....by the time my daughter was 7, stringing 3 healthy days together was a good week!!!! My daughter caught everything also (as I previously mentioned, by the time she was diagnosed, the doctor informed me her immune system was shot to hell).

Arlene

re: Celiac signs in infancy

I have one more thing to add to my previous email. My son was sick all the time. We’d be lucky to have a full week, when he wasn’t sick with something. Ear infections, RSV, Roseola....you name it, he caught it. When other kids would catch the sniffles, my son would be vomiting with 105.4 fever....EVERY time.

January 26, 2006

I read every word of this and am grateful to you for the response. I'm also

greatful to for starting the thread. I have a two year old and a 4

year old at home. They don't seem to display any symptoms, but neither did

I! I have been wrestling with the decision of whether or not to test them,

make them GF, etc., especially since my oldest has decided he doesn't want to

eat anymore. Dinner time has become negotiation time! No one complains (and

I know it is normal for kids his age) but I don't see him eating and it's

been a while for a growth spurt and I've been trying to keep my " panic " in

check. My oldest did have a blood test run last year because they were

already drawing blood for something else, but of course, his results

were " inconclusive. " I know how dramatic of a lifestyle change it can be and

don't want to seem paranoid or overreactive but after anxiously following

this thread, they are both getting tested (and by Enterolab for that

matter)!!!!!!!!!! Thanks to all of you

On Thu, 26 Jan 2006 18:54:41 -0000, Rejoyce Hanson wrote

> I am a breastfeeding non-celiac gluten eating mom. I was

> breastfeeding my second child and knew that his stools should

> unformed, mustard colored, seedy etc. However, his stools were

> frothy, green, sometimes browny yellow, the stink was not of sweet bf

> poos, sometimes with white chunks (now I realize probably milk fat),

> mucousy like egg whites. Sometimes he had rashes that looked like a

> burn and I knew it was acid from his stomach running through him to

> burn his butt. I used cloth diapers, I knew this was not right. It

> looked like his intestinal lining was being ripped from his body at

> every bowel movement and when the lining was gone, the burn rash

> would come from the acid. In the beginning we thought dairy, so I

> went off all dairy, every bit of it. And he got somewhat better,

> but not normal still. By age 3 months he has settled down a bit. I

> took him to the pediatrician and he reluctantly agreed to run a

> stool test for Garadia, a bacteria. Of course that was negative he

> was only 4 or 5 mo old at the time. He nursed a lot, never could go

> 2 hours without nursing even at 6 mo old. He cried all the time,

> literally from day 1. In the hospital he slept sitting upright in

> my husband's arms, when my dh would dose off and move him he would

> scream. It was horrible. He slept in a true carseat in semi-

> recline for the first 3 mo of his life, sleeping only 20 min at a

> time. We was slow to gain weight, but no one seemed concerned, they

> told me to nurse more!!! I classified him as a Dr. Sears classic

> high needs infant/ child. He seemed to be in pain and we were lead

> to believe it's probably colic and not to worry. His legs had to be

> up into his stomach to sleep, he loved being carried in a baby sling

> with his legs tucked up. When we started to introduce solids, oh,

> boy the rashes started to come more. Bananas - anal rash, sweet

> potatos - anal rash, peaches - anal rash. Oatmeal was killer, came

> out the way it went in and rice cereal wasn't much better. I tried

> millet made at home but I wasn't very good about having to do all

> the extra prep work. White grape juice and turkey were the only two

> foods he could eat. As he got a bit older the rashes were not so

> pronounced, and I though well maybe the breastfeeding is keeping him

> from having solid stools. My other son was constipated all the time,

> still is (CD dx will come soon I believe). He also would push away

> bread, biscuts, cake, donuts, and cookies. He sometimes would take

> one bite and sometimes not. I took a distict notice to this at

> Christmas when he was 8 months old, he did not eat the bread with

> the dinner. He ate the turkey, no gravy, and some veggies. He

> simply didn't seem to like them so I took them off his menu. He

> prefered strawberries, nix the bananas. He also liked salads. He

> eats his brocolli before touching his meat!!! So, as a mom I think

> well this is okay, he likes healthy food all the better for him.

> WHen he was starting to walk, I can remember some very distinct

> moments. One day I heard this horrible explosion from his butt, I

> looked at him and said are you okay. I won't go into detail of what

> it contained but it was classic CD of unprocessed foods, froth,

> mucous, etc. This happened quite a few times. It stained the

> diaper covers permanently. Around the time he turned 2, I gave birth

> to our daughter. In the months prior to her birth we discovered

> that certain foods were more likely to cause diarrhea than others.

> My mother was staying with us and I told her that he couldn't eat

> crackers, yogurt 1X per 3 days, b/c they gave him diarrhea and

> rashes. She did not question it and did not feed him crackers or

> yogurt. His diarrhea episodes decreased, which is good b/c my

> mother isn't the kind who deals well with messes. My mother being a

> diabetic an knowing I watch the amount of carbs I eat was fixing

> dinners that were basically meat, veggies and salad. I don't recall

> what she fed my children for lunch, probably mac and cheese,

> sandwiches, soup, all gluten containing. Once my mother left and my

> MIL was back in the picture of watching him on occassion in the

> evening or weekend, she obviously did not listen to me when I said

> he can't eat these things. But this was typical, at first we

> thought he was milk intolerant and I would tell her not to feed him

> milk and she did and I knew it b/c the diarrhea was worse. So we're

> going about our business limiting cracker products and he is still

> having diarrhea but not as often. The cracker products that were on

> the off list were specifically from Nabisco. I asked the doctor why

> he couldn't eat certain foods without diarrhea, no answer. Almost 3,

> early 05, he had diarrhea with the mucous on a Sat and it had been a

> long time since that had happened this badly. I phone up the person

> who brought the snack for the Friday event we attend and she said it

> was Sociable crackers!!! Well that explained the diarrhea, but I

> still had no idea why those foods did this too him. He had a skin

> reaction to touching Rye at church around this time and I decided to

> take him to an allergist finally, this is now April 05. I take my

> list of offending foods, I call ahead to make sure they can test for

> Rye. It's 55 miles from my house. We get there, he has no answers,

> test him for everything but RYE!!! And we leave with " well, just

> keep doing what you're doing " . Thanks... In August 05 I have both

> my boys with me at an appt for my dd for her upcoming tear duct

> probing. I mention to the doctor that he has some food issues. She

> tells me that there are some new test on the market for

> environmental and chemical allergies and ask if I would bring him

> back. Well, okay, I'll bring him back. I haven't taken him to a

> doctor in a long time for a check-up since no doctor seemed able to

> tell me what was wrong with him. He was 3 still wearing size 24 mo

> and 2T and his sister was catching up to him in weight. Over the

> summer he had started to tell me his stomach hurt. Well, as an

> infant he lived on homeopathic Tummy medication, so I pulled that

> out and gave it to him. I figured it would either work or give a

> placebo effect. Eitherway, I blew off him telling me his tummy

> hurt. I think I was so frustrated by lack of answers that I let that

> over shadow what I should have taken seriously. He also would hurt

> so bad he could not walk and I thought he was playing a game, you

> know 3 year olds. He also had stopped eating except for pure

> necessity. He would eat the veggies and fruits and leave the rest,

> occassionally taking 2 or 3 bites of meat. We were watching our

> little boy waste away and could not force him to eat more. I looked

> into Pediasure, but knowing his diary issue, that was out. On Sept 8,

> 2005 we had our answer. I took him back to this young pediatrican

> and she reviewed his medical records, his growth charts, she's

> looking at his sibling, noting the height of me and my husband, and

> I share with her my list of offending foods and she said it is

> either Celiac Disease or Cystic Fibrosis, but she clarified and said

> she really didn't think it was CF. She ordered the TTG and some

> allergy test. And I went home to read up on it, stopping at McD for

> lunch. Where he ate his last chicken nuggets and had stomach pain

> and couldn't walk and it all clicked... Of course the TTG came back

> negative b/c he was on a nearly gluten free diet. I had asked her

> to run the rest of the Celiac Disease panel b/c I didn't want to go

> through 2 blood draws and I knew the TTG would come back negative.

> Those other test didn't happen and I was unaware they didn't happen

> until he had been complete GF for a couple of weeks and we had

> started teaching him about gluten and that is why his tummy hurt.

> So nearly 60 days into GF, we see a Pedi GI who orders the entire

> Panel including the gene markers. We get those back, IGG positive

> and DQ2. My dh and I have the CD panel done, Pedi GI order it for

> us. I'm negative, my dh had the gene and we are waiting still on the

> rest of his results to reach our hands. In the mean time, 54 days

> into GF our little boy gained 1 1/2 pounds an about 3/4 " in height.

> No biopsy, that would require making him eat gluten and we've worked

> to hard teaching him not to eat gluten and he ask before he eats

> anything 'it's gots wheats?' We are not going to lie and sneak

> gluten into him, he would know. We're working on trying to increase

> his appetite. He still will not eat much. We are going to see Dr.

> Fasano Tues and I'm not sure why... I want to see his nutritionist,

> we have some issues that need to be worked on. And maybe some good

> insight to the whole not wanting to eat issue will be helpful in

> getting him past it. I know he can not tell the difference between

> hunger and pain. He has a very high pain threshold. I hope that

> someday he will be able to distinguish hunger pain from just the

> pain he has lived with up until September. I believe with every

> bone in my body that gluten passes into breastmilk. The pediatric

> GI we have seen also believe this to be true dispite the

> publications from the Celiac Disease Foundation that state

> otherwise. The most symptomatic time period for him was between 9 mo

> old and 13 mo old when solids were being eaten in addition to

> breastfeeding. That was the time to biopsy him, but no one had ever

> even mentioned Celiac Disease and I had only hear the words 1X

> before long before he was born. My daughter who is still bfing has

> only had the frothy poop 2X or 3X and when it happened I said 'oh,

> no not her too, what is this from.' I have to wonder if she has CD

> too, she does not like bread or crackers, of course they haven't

> been around her much b/c I didn't have them around her brother. I

> would like to see if she has diarrhea from crackers etc, but she

> won't eat them. Makes me wonder... She didn't react to my

> breastmilk like her brother, but then again there are a lot of

> factors that go into breastmilk -- if I had a leaky gut with my CD

> child and it was healed by the time I had her??? I wish I had kept

> a journal of his life as a baby. It was horrific and I cried for

> days after reading about Celiac Disease knowing I could have spared

> him if I had known. I would have gone GF, I was already DF for him.

> And the saddest part, I mentioned his dx to the La Leche League

> leaders who had been with me through his infancy and one said well

> that makes sense, she knew what CD was and had never mentioned it to

> me. The other also seemed to have a vague understanding of CD and

> she was the one I was with on the phone discussing his food

> reactions and not knowing where to turn. If you have read this far,

> bless you. Sorry it is so long. I just really believe there are a

> lot of infants out there who are suffering 'colic' etc and

> pediatricians are not giving the parents the benefit of even

> questioning them about family history etc. No child should suffer

> from drinking the best food for human babies -- human milk and yet

> my little boy did suffer and has lasting effects from his painful infancy.

> Rejoyce

> Winchester,VA

>

January 26, 2006

Wow! Isn't it amazing how they know what to avoid! Good for you sticking to your guns and getting to the bottom of it!

You are making me think about DD - I was just dx'd with CD. DD is almost three and doesn't seem to have diarrhea or vomiting. She does get some nasty diaper rash that looks like burns. I always thought it was odd that it would spring up suddenly, rather than gradually get worse. Hmmmm. I did get her tested today and they will do the gene testing too. But this gives me more to think about.

Trudy

Re: Celiac signs in infancy

I am a breastfeeding non-celiac gluten eating mom. I wasbreastfeeding my second child and knew that his stools shouldunformed, mustard colored, seedy etc. However, his stools werefrothy, green, sometimes browny yellow, the stink was not of sweet bfpoos, sometimes with white chunks (now I realize probably milk fat),mucousy like egg whites. Sometimes he had rashes that looked like aburn and I knew it was acid from his stomach running through him toburn his butt. I used cloth diapers, I knew this was not right. Itlooked like his intestinal lining was being ripped from his body atevery bowel movement and when the lining was gone, the burn rash wouldcome from the acid. In the beginning we thought dairy, so I went off all dairy, every bitof it. And he got somewhat better, but not normal still. By age 3months he has settled down a bit.I took him to the pediatrician and he reluctantly agreed to run astool test for Garadia, a bacteria. Of course that was negative hewas only 4 or 5 mo old at the time.He nursed a lot, never could go 2 hours without nursing even at 6 moold. He cried all the time, literally from day 1. In the hospital heslept sitting upright in my husband's arms, when my dh would dose offand move him he would scream. It was horrible. He slept in a truecarseat in semi-recline for the first 3 mo of his life, sleeping only20 min at a time. We was slow to gain weight, but no one seemedconcerned, they told me to nurse more!!!I classified him as a Dr. Sears classic high needs infant/ child. Heseemed to be in pain and we were lead to believe it's probably colicand not to worry. His legs had to be up into his stomach to sleep, heloved being carried in a baby sling with his legs tucked up.When we started to introduce solids, oh, boy the rashes started tocome more. Bananas - anal rash, sweet potatos - anal rash, peaches -anal rash. Oatmeal was killer, came out the way it went in and ricecereal wasn't much better. I tried millet made at home but I wasn'tvery good about having to do all the extra prep work. White grapejuice and turkey were the only two foods he could eat. As he got abit older the rashes were not so pronounced, and I though well maybethe breastfeeding is keeping him from having solid stools. My otherson was constipated all the time, still is (CD dx will come soon Ibelieve).He also would push away bread, biscuts, cake, donuts, and cookies. Hesometimes would take one bite and sometimes not. I took a distictnotice to this at Christmas when he was 8 months old, he did not eatthe bread with the dinner. He ate the turkey, no gravy, and someveggies. He simply didn't seem to like them so I took them off hismenu. He prefered strawberries, nix the bananas. He also likedsalads. He eats his brocolli before touching his meat!!! So, as amom I think well this is okay, he likes healthy food all the betterfor him. WHen he was starting to walk, I can remember some very distinctmoments. One day I heard this horrible explosion from his butt, Ilooked at him and said are you okay. I won't go into detail of whatit contained but it was classic CD of unprocessed foods, froth,mucous, etc. This happened quite a few times. It stained the diapercovers permanently.Around the time he turned 2, I gave birth to our daughter. In themonths prior to her birth we discovered that certain foods were morelikely to cause diarrhea than others. My mother was staying with usand I told her that he couldn't eat crackers, yogurt 1X per 3 days,b/c they gave him diarrhea and rashes. She did not question it anddid not feed him crackers or yogurt. His diarrhea episodes decreased,which is good b/c my mother isn't the kind who deals well with messes.My mother being a diabetic an knowing I watch the amount of carbs Ieat was fixing dinners that were basically meat, veggies and salad. Idon't recall what she fed my children for lunch, probably mac andcheese, sandwiches, soup, all gluten containing. Once my mother leftand my MIL was back in the picture of watching him on occassion in theevening or weekend, she obviously did not listen to me when I said hecan't eat these things. But this was typical, at first we thought hewas milk intolerant and I would tell her not to feed him milk and shedid and I knew it b/c the diarrhea was worse.So we're going about our business limiting cracker products and he isstill having diarrhea but not as often. The cracker products thatwere on the off list were specifically from Nabisco. I asked thedoctor why he couldn't eat certain foods without diarrhea, no answer.Almost 3, early 05, he had diarrhea with the mucous on a Sat and ithad been a long time since that had happened this badly. I phone upthe person who brought the snack for the Friday event we attend andshe said it was Sociable crackers!!! Well that explained thediarrhea, but I still had no idea why those foods did this too him.He had a skin reaction to touching Rye at church around this time andI decided to take him to an allergist finally, this is now April 05. I take my list of offending foods, I call ahead to make sure they cantest for Rye. It's 55 miles from my house. We get there, he has noanswers, test him for everything but RYE!!! And we leave with "well,just keep doing what you're doing". Thanks...In August 05 I have both my boys with me at an appt for my dd for herupcoming tear duct probing. I mention to the doctor that he has somefood issues. She tells me that there are some new test on the marketfor environmental and chemical allergies and ask if I would bring himback. Well, okay, I'll bring him back. I haven't taken him to adoctor in a long time for a check-up since no doctor seemed able totell me what was wrong with him. He was 3 still wearing size 24 moand 2T and his sister was catching up to him in weight.Over the summer he had started to tell me his stomach hurt. Well, asan infant he lived on homeopathic Tummy medication, so I pulled thatout and gave it to him. I figured it would either work or give aplacebo effect. Eitherway, I blew off him telling me his tummy hurt.I think I was so frustrated by lack of answers that I let that overshadow what I should have taken seriously. He also would hurt so badhe could not walk and I thought he was playing a game, you know 3 yearolds.He also had stopped eating except for pure necessity. He would eatthe veggies and fruits and leave the rest, occassionally taking 2 or 3bites of meat. We were watching our little boy waste away and couldnot force him to eat more. I looked into Pediasure, but knowing hisdiary issue, that was out.On Sept 8, 2005 we had our answer. I took him back to this youngpediatrican and she reviewed his medical records, his growth charts,she's looking at his sibling, noting the height of me and my husband,and I share with her my list of offending foods and she said it iseither Celiac Disease or Cystic Fibrosis, but she clarified and saidshe really didn't think it was CF. She ordered the TTG and someallergy test. And I went home to read up on it, stopping at McD forlunch. Where he ate his last chicken nuggets and had stomach pain andcouldn't walk and it all clicked...Of course the TTG came back negative b/c he was on a nearly glutenfree diet. I had asked her to run the rest of the Celiac Diseasepanel b/c I didn't want to go through 2 blood draws and I knew the TTGwould come back negative. Those other test didn't happen and I wasunaware they didn't happen until he had been complete GF for a coupleof weeks and we had started teaching him about gluten and that is whyhis tummy hurt. So nearly 60 days into GF, we see a Pedi GI who orders the entirePanel including the gene markers. We get those back, IGG positive andDQ2. My dh and I have the CD panel done, Pedi GI order it for us. I'm negative, my dh had the gene and we are waiting still on the restof his results to reach our hands.In the mean time, 54 days into GF our little boy gained 1 1/2 poundsan about 3/4" in height. No biopsy, that would require making him eat gluten and we've workedto hard teaching him not to eat gluten and he ask before he eatsanything 'it's gots wheats?' We are not going to lie and sneak gluteninto him, he would know. We're working on trying to increase hisappetite. He still will not eat much.We are going to see Dr. Fasano Tues and I'm not sure why... I want tosee his nutritionist, we have some issues that need to be worked on. And maybe some good insight to the whole not wanting to eat issue willbe helpful in getting him past it.I know he can not tell the difference between hunger and pain. He hasa very high pain threshold. I hope that someday he will be able todistinguish hunger pain from just the pain he has lived with up untilSeptember. I believe with every bone in my body that gluten passes intobreastmilk. The pediatric GI we have seen also believe this to betrue dispite the publications from the Celiac Disease Foundation thatstate otherwise.The most symptomatic time period for him was between 9 mo old and 13mo old when solids were being eaten in addition to breastfeeding. That was the time to biopsy him, but no one had ever even mentionedCeliac Disease and I had only hear the words 1X before long before hewas born.My daughter who is still bfing has only had the frothy poop 2X or 3Xand when it happened I said 'oh, no not her too, what is this from.' I have to wonder if she has CD too, she does not like bread orcrackers, of course they haven't been around her much b/c I didn'thave them around her brother. I would like to see if she has diarrheafrom crackers etc, but she won't eat them. Makes me wonder... Shedidn't react to my breastmilk like her brother, but then again thereare a lot of factors that go into breastmilk -- if I had a leaky gutwith my CD child and it was healed by the time I had her??? I wish I had kept a journal of his life as a baby. It was horrificand I cried for days after reading about Celiac Disease knowing Icould have spared him if I had known. I would have gone GF, I wasalready DF for him. And the saddest part, I mentioned his dx to theLa Leche League leaders who had been with me through his infancy andone said well that makes sense, she knew what CD was and had nevermentioned it to me. The other also seemed to have a vagueunderstanding of CD and she was the one I was with on the phonediscussing his food reactions and not knowing where to turn.If you have read this far, bless you. Sorry it is so long. I justreally believe there are a lot of infants out there who are suffering'colic' etc and pediatricians are not giving the parents the benefitof even questioning them about family history etc. No child shouldsuffer from drinking the best food for human babies -- human milk andyet my little boy did suffer and has lasting effects from his painfulinfancy.RejoyceWinchester,VA

January 26, 2006

Wow! Isn't it amazing how they know what to avoid! Good for you sticking to your guns and getting to the bottom of it!

You are making me think about DD - I was just dx'd with CD. DD is almost three and doesn't seem to have diarrhea or vomiting. She does get some nasty diaper rash that looks like burns. I always thought it was odd that it would spring up suddenly, rather than gradually get worse. Hmmmm. I did get her tested today and they will do the gene testing too. But this gives me more to think about.

Trudy

Re: Celiac signs in infancy

I am a breastfeeding non-celiac gluten eating mom. I wasbreastfeeding my second child and knew that his stools shouldunformed, mustard colored, seedy etc. However, his stools werefrothy, green, sometimes browny yellow, the stink was not of sweet bfpoos, sometimes with white chunks (now I realize probably milk fat),mucousy like egg whites. Sometimes he had rashes that looked like aburn and I knew it was acid from his stomach running through him toburn his butt. I used cloth diapers, I knew this was not right. Itlooked like his intestinal lining was being ripped from his body atevery bowel movement and when the lining was gone, the burn rash wouldcome from the acid. In the beginning we thought dairy, so I went off all dairy, every bitof it. And he got somewhat better, but not normal still. By age 3months he has settled down a bit.I took him to the pediatrician and he reluctantly agreed to run astool test for Garadia, a bacteria. Of course that was negative hewas only 4 or 5 mo old at the time.He nursed a lot, never could go 2 hours without nursing even at 6 moold. He cried all the time, literally from day 1. In the hospital heslept sitting upright in my husband's arms, when my dh would dose offand move him he would scream. It was horrible. He slept in a truecarseat in semi-recline for the first 3 mo of his life, sleeping only20 min at a time. We was slow to gain weight, but no one seemedconcerned, they told me to nurse more!!!I classified him as a Dr. Sears classic high needs infant/ child. Heseemed to be in pain and we were lead to believe it's probably colicand not to worry. His legs had to be up into his stomach to sleep, heloved being carried in a baby sling with his legs tucked up.When we started to introduce solids, oh, boy the rashes started tocome more. Bananas - anal rash, sweet potatos - anal rash, peaches -anal rash. Oatmeal was killer, came out the way it went in and ricecereal wasn't much better. I tried millet made at home but I wasn'tvery good about having to do all the extra prep work. White grapejuice and turkey were the only two foods he could eat. As he got abit older the rashes were not so pronounced, and I though well maybethe breastfeeding is keeping him from having solid stools. My otherson was constipated all the time, still is (CD dx will come soon Ibelieve).He also would push away bread, biscuts, cake, donuts, and cookies. Hesometimes would take one bite and sometimes not. I took a distictnotice to this at Christmas when he was 8 months old, he did not eatthe bread with the dinner. He ate the turkey, no gravy, and someveggies. He simply didn't seem to like them so I took them off hismenu. He prefered strawberries, nix the bananas. He also likedsalads. He eats his brocolli before touching his meat!!! So, as amom I think well this is okay, he likes healthy food all the betterfor him. WHen he was starting to walk, I can remember some very distinctmoments. One day I heard this horrible explosion from his butt, Ilooked at him and said are you okay. I won't go into detail of whatit contained but it was classic CD of unprocessed foods, froth,mucous, etc. This happened quite a few times. It stained the diapercovers permanently.Around the time he turned 2, I gave birth to our daughter. In themonths prior to her birth we discovered that certain foods were morelikely to cause diarrhea than others. My mother was staying with usand I told her that he couldn't eat crackers, yogurt 1X per 3 days,b/c they gave him diarrhea and rashes. She did not question it anddid not feed him crackers or yogurt. His diarrhea episodes decreased,which is good b/c my mother isn't the kind who deals well with messes.My mother being a diabetic an knowing I watch the amount of carbs Ieat was fixing dinners that were basically meat, veggies and salad. Idon't recall what she fed my children for lunch, probably mac andcheese, sandwiches, soup, all gluten containing. Once my mother leftand my MIL was back in the picture of watching him on occassion in theevening or weekend, she obviously did not listen to me when I said hecan't eat these things. But this was typical, at first we thought hewas milk intolerant and I would tell her not to feed him milk and shedid and I knew it b/c the diarrhea was worse.So we're going about our business limiting cracker products and he isstill having diarrhea but not as often. The cracker products thatwere on the off list were specifically from Nabisco. I asked thedoctor why he couldn't eat certain foods without diarrhea, no answer.Almost 3, early 05, he had diarrhea with the mucous on a Sat and ithad been a long time since that had happened this badly. I phone upthe person who brought the snack for the Friday event we attend andshe said it was Sociable crackers!!! Well that explained thediarrhea, but I still had no idea why those foods did this too him.He had a skin reaction to touching Rye at church around this time andI decided to take him to an allergist finally, this is now April 05. I take my list of offending foods, I call ahead to make sure they cantest for Rye. It's 55 miles from my house. We get there, he has noanswers, test him for everything but RYE!!! And we leave with "well,just keep doing what you're doing". Thanks...In August 05 I have both my boys with me at an appt for my dd for herupcoming tear duct probing. I mention to the doctor that he has somefood issues. She tells me that there are some new test on the marketfor environmental and chemical allergies and ask if I would bring himback. Well, okay, I'll bring him back. I haven't taken him to adoctor in a long time for a check-up since no doctor seemed able totell me what was wrong with him. He was 3 still wearing size 24 moand 2T and his sister was catching up to him in weight.Over the summer he had started to tell me his stomach hurt. Well, asan infant he lived on homeopathic Tummy medication, so I pulled thatout and gave it to him. I figured it would either work or give aplacebo effect. Eitherway, I blew off him telling me his tummy hurt.I think I was so frustrated by lack of answers that I let that overshadow what I should have taken seriously. He also would hurt so badhe could not walk and I thought he was playing a game, you know 3 yearolds.He also had stopped eating except for pure necessity. He would eatthe veggies and fruits and leave the rest, occassionally taking 2 or 3bites of meat. We were watching our little boy waste away and couldnot force him to eat more. I looked into Pediasure, but knowing hisdiary issue, that was out.On Sept 8, 2005 we had our answer. I took him back to this youngpediatrican and she reviewed his medical records, his growth charts,she's looking at his sibling, noting the height of me and my husband,and I share with her my list of offending foods and she said it iseither Celiac Disease or Cystic Fibrosis, but she clarified and saidshe really didn't think it was CF. She ordered the TTG and someallergy test. And I went home to read up on it, stopping at McD forlunch. Where he ate his last chicken nuggets and had stomach pain andcouldn't walk and it all clicked...Of course the TTG came back negative b/c he was on a nearly glutenfree diet. I had asked her to run the rest of the Celiac Diseasepanel b/c I didn't want to go through 2 blood draws and I knew the TTGwould come back negative. Those other test didn't happen and I wasunaware they didn't happen until he had been complete GF for a coupleof weeks and we had started teaching him about gluten and that is whyhis tummy hurt. So nearly 60 days into GF, we see a Pedi GI who orders the entirePanel including the gene markers. We get those back, IGG positive andDQ2. My dh and I have the CD panel done, Pedi GI order it for us. I'm negative, my dh had the gene and we are waiting still on the restof his results to reach our hands.In the mean time, 54 days into GF our little boy gained 1 1/2 poundsan about 3/4" in height. No biopsy, that would require making him eat gluten and we've workedto hard teaching him not to eat gluten and he ask before he eatsanything 'it's gots wheats?' We are not going to lie and sneak gluteninto him, he would know. We're working on trying to increase hisappetite. He still will not eat much.We are going to see Dr. Fasano Tues and I'm not sure why... I want tosee his nutritionist, we have some issues that need to be worked on. And maybe some good insight to the whole not wanting to eat issue willbe helpful in getting him past it.I know he can not tell the difference between hunger and pain. He hasa very high pain threshold. I hope that someday he will be able todistinguish hunger pain from just the pain he has lived with up untilSeptember. I believe with every bone in my body that gluten passes intobreastmilk. The pediatric GI we have seen also believe this to betrue dispite the publications from the Celiac Disease Foundation thatstate otherwise.The most symptomatic time period for him was between 9 mo old and 13mo old when solids were being eaten in addition to breastfeeding. That was the time to biopsy him, but no one had ever even mentionedCeliac Disease and I had only hear the words 1X before long before hewas born.My daughter who is still bfing has only had the frothy poop 2X or 3Xand when it happened I said 'oh, no not her too, what is this from.' I have to wonder if she has CD too, she does not like bread orcrackers, of course they haven't been around her much b/c I didn'thave them around her brother. I would like to see if she has diarrheafrom crackers etc, but she won't eat them. Makes me wonder... Shedidn't react to my breastmilk like her brother, but then again thereare a lot of factors that go into breastmilk -- if I had a leaky gutwith my CD child and it was healed by the time I had her??? I wish I had kept a journal of his life as a baby. It was horrificand I cried for days after reading about Celiac Disease knowing Icould have spared him if I had known. I would have gone GF, I wasalready DF for him. And the saddest part, I mentioned his dx to theLa Leche League leaders who had been with me through his infancy andone said well that makes sense, she knew what CD was and had nevermentioned it to me. The other also seemed to have a vagueunderstanding of CD and she was the one I was with on the phonediscussing his food reactions and not knowing where to turn.If you have read this far, bless you. Sorry it is so long. I justreally believe there are a lot of infants out there who are suffering'colic' etc and pediatricians are not giving the parents the benefitof even questioning them about family history etc. No child shouldsuffer from drinking the best food for human babies -- human milk andyet my little boy did suffer and has lasting effects from his painfulinfancy.RejoyceWinchester,VA

January 26, 2006

Wow! Isn't it amazing how they know what to avoid! Good for you sticking to your guns and getting to the bottom of it!

You are making me think about DD - I was just dx'd with CD. DD is almost three and doesn't seem to have diarrhea or vomiting. She does get some nasty diaper rash that looks like burns. I always thought it was odd that it would spring up suddenly, rather than gradually get worse. Hmmmm. I did get her tested today and they will do the gene testing too. But this gives me more to think about.

Trudy

Re: Celiac signs in infancy

I am a breastfeeding non-celiac gluten eating mom. I wasbreastfeeding my second child and knew that his stools shouldunformed, mustard colored, seedy etc. However, his stools werefrothy, green, sometimes browny yellow, the stink was not of sweet bfpoos, sometimes with white chunks (now I realize probably milk fat),mucousy like egg whites. Sometimes he had rashes that looked like aburn and I knew it was acid from his stomach running through him toburn his butt. I used cloth diapers, I knew this was not right. Itlooked like his intestinal lining was being ripped from his body atevery bowel movement and when the lining was gone, the burn rash wouldcome from the acid. In the beginning we thought dairy, so I went off all dairy, every bitof it. And he got somewhat better, but not normal still. By age 3months he has settled down a bit.I took him to the pediatrician and he reluctantly agreed to run astool test for Garadia, a bacteria. Of course that was negative hewas only 4 or 5 mo old at the time.He nursed a lot, never could go 2 hours without nursing even at 6 moold. He cried all the time, literally from day 1. In the hospital heslept sitting upright in my husband's arms, when my dh would dose offand move him he would scream. It was horrible. He slept in a truecarseat in semi-recline for the first 3 mo of his life, sleeping only20 min at a time. We was slow to gain weight, but no one seemedconcerned, they told me to nurse more!!!I classified him as a Dr. Sears classic high needs infant/ child. Heseemed to be in pain and we were lead to believe it's probably colicand not to worry. His legs had to be up into his stomach to sleep, heloved being carried in a baby sling with his legs tucked up.When we started to introduce solids, oh, boy the rashes started tocome more. Bananas - anal rash, sweet potatos - anal rash, peaches -anal rash. Oatmeal was killer, came out the way it went in and ricecereal wasn't much better. I tried millet made at home but I wasn'tvery good about having to do all the extra prep work. White grapejuice and turkey were the only two foods he could eat. As he got abit older the rashes were not so pronounced, and I though well maybethe breastfeeding is keeping him from having solid stools. My otherson was constipated all the time, still is (CD dx will come soon Ibelieve).He also would push away bread, biscuts, cake, donuts, and cookies. Hesometimes would take one bite and sometimes not. I took a distictnotice to this at Christmas when he was 8 months old, he did not eatthe bread with the dinner. He ate the turkey, no gravy, and someveggies. He simply didn't seem to like them so I took them off hismenu. He prefered strawberries, nix the bananas. He also likedsalads. He eats his brocolli before touching his meat!!! So, as amom I think well this is okay, he likes healthy food all the betterfor him. WHen he was starting to walk, I can remember some very distinctmoments. One day I heard this horrible explosion from his butt, Ilooked at him and said are you okay. I won't go into detail of whatit contained but it was classic CD of unprocessed foods, froth,mucous, etc. This happened quite a few times. It stained the diapercovers permanently.Around the time he turned 2, I gave birth to our daughter. In themonths prior to her birth we discovered that certain foods were morelikely to cause diarrhea than others. My mother was staying with usand I told her that he couldn't eat crackers, yogurt 1X per 3 days,b/c they gave him diarrhea and rashes. She did not question it anddid not feed him crackers or yogurt. His diarrhea episodes decreased,which is good b/c my mother isn't the kind who deals well with messes.My mother being a diabetic an knowing I watch the amount of carbs Ieat was fixing dinners that were basically meat, veggies and salad. Idon't recall what she fed my children for lunch, probably mac andcheese, sandwiches, soup, all gluten containing. Once my mother leftand my MIL was back in the picture of watching him on occassion in theevening or weekend, she obviously did not listen to me when I said hecan't eat these things. But this was typical, at first we thought hewas milk intolerant and I would tell her not to feed him milk and shedid and I knew it b/c the diarrhea was worse.So we're going about our business limiting cracker products and he isstill having diarrhea but not as often. The cracker products thatwere on the off list were specifically from Nabisco. I asked thedoctor why he couldn't eat certain foods without diarrhea, no answer.Almost 3, early 05, he had diarrhea with the mucous on a Sat and ithad been a long time since that had happened this badly. I phone upthe person who brought the snack for the Friday event we attend andshe said it was Sociable crackers!!! Well that explained thediarrhea, but I still had no idea why those foods did this too him.He had a skin reaction to touching Rye at church around this time andI decided to take him to an allergist finally, this is now April 05. I take my list of offending foods, I call ahead to make sure they cantest for Rye. It's 55 miles from my house. We get there, he has noanswers, test him for everything but RYE!!! And we leave with "well,just keep doing what you're doing". Thanks...In August 05 I have both my boys with me at an appt for my dd for herupcoming tear duct probing. I mention to the doctor that he has somefood issues. She tells me that there are some new test on the marketfor environmental and chemical allergies and ask if I would bring himback. Well, okay, I'll bring him back. I haven't taken him to adoctor in a long time for a check-up since no doctor seemed able totell me what was wrong with him. He was 3 still wearing size 24 moand 2T and his sister was catching up to him in weight.Over the summer he had started to tell me his stomach hurt. Well, asan infant he lived on homeopathic Tummy medication, so I pulled thatout and gave it to him. I figured it would either work or give aplacebo effect. Eitherway, I blew off him telling me his tummy hurt.I think I was so frustrated by lack of answers that I let that overshadow what I should have taken seriously. He also would hurt so badhe could not walk and I thought he was playing a game, you know 3 yearolds.He also had stopped eating except for pure necessity. He would eatthe veggies and fruits and leave the rest, occassionally taking 2 or 3bites of meat. We were watching our little boy waste away and couldnot force him to eat more. I looked into Pediasure, but knowing hisdiary issue, that was out.On Sept 8, 2005 we had our answer. I took him back to this youngpediatrican and she reviewed his medical records, his growth charts,she's looking at his sibling, noting the height of me and my husband,and I share with her my list of offending foods and she said it iseither Celiac Disease or Cystic Fibrosis, but she clarified and saidshe really didn't think it was CF. She ordered the TTG and someallergy test. And I went home to read up on it, stopping at McD forlunch. Where he ate his last chicken nuggets and had stomach pain andcouldn't walk and it all clicked...Of course the TTG came back negative b/c he was on a nearly glutenfree diet. I had asked her to run the rest of the Celiac Diseasepanel b/c I didn't want to go through 2 blood draws and I knew the TTGwould come back negative. Those other test didn't happen and I wasunaware they didn't happen until he had been complete GF for a coupleof weeks and we had started teaching him about gluten and that is whyhis tummy hurt. So nearly 60 days into GF, we see a Pedi GI who orders the entirePanel including the gene markers. We get those back, IGG positive andDQ2. My dh and I have the CD panel done, Pedi GI order it for us. I'm negative, my dh had the gene and we are waiting still on the restof his results to reach our hands.In the mean time, 54 days into GF our little boy gained 1 1/2 poundsan about 3/4" in height. No biopsy, that would require making him eat gluten and we've workedto hard teaching him not to eat gluten and he ask before he eatsanything 'it's gots wheats?' We are not going to lie and sneak gluteninto him, he would know. We're working on trying to increase hisappetite. He still will not eat much.We are going to see Dr. Fasano Tues and I'm not sure why... I want tosee his nutritionist, we have some issues that need to be worked on. And maybe some good insight to the whole not wanting to eat issue willbe helpful in getting him past it.I know he can not tell the difference between hunger and pain. He hasa very high pain threshold. I hope that someday he will be able todistinguish hunger pain from just the pain he has lived with up untilSeptember. I believe with every bone in my body that gluten passes intobreastmilk. The pediatric GI we have seen also believe this to betrue dispite the publications from the Celiac Disease Foundation thatstate otherwise.The most symptomatic time period for him was between 9 mo old and 13mo old when solids were being eaten in addition to breastfeeding. That was the time to biopsy him, but no one had ever even mentionedCeliac Disease and I had only hear the words 1X before long before hewas born.My daughter who is still bfing has only had the frothy poop 2X or 3Xand when it happened I said 'oh, no not her too, what is this from.' I have to wonder if she has CD too, she does not like bread orcrackers, of course they haven't been around her much b/c I didn'thave them around her brother. I would like to see if she has diarrheafrom crackers etc, but she won't eat them. Makes me wonder... Shedidn't react to my breastmilk like her brother, but then again thereare a lot of factors that go into breastmilk -- if I had a leaky gutwith my CD child and it was healed by the time I had her??? I wish I had kept a journal of his life as a baby. It was horrificand I cried for days after reading about Celiac Disease knowing Icould have spared him if I had known. I would have gone GF, I wasalready DF for him. And the saddest part, I mentioned his dx to theLa Leche League leaders who had been with me through his infancy andone said well that makes sense, she knew what CD was and had nevermentioned it to me. The other also seemed to have a vagueunderstanding of CD and she was the one I was with on the phonediscussing his food reactions and not knowing where to turn.If you have read this far, bless you. Sorry it is so long. I justreally believe there are a lot of infants out there who are suffering'colic' etc and pediatricians are not giving the parents the benefitof even questioning them about family history etc. No child shouldsuffer from drinking the best food for human babies -- human milk andyet my little boy did suffer and has lasting effects from his painfulinfancy.RejoyceWinchester,VA

January 26, 2006

Another symptom when the kids were Babies/toddlers was anemia.

January 27, 2006

You're so welcome, !

TIA,

& Mike

Re: Re: Celiac signs in infancy

I read every word of this and am grateful to you for the response. I'm also

greatful to for starting the thread. I have a two year old and a 4

year old at home. They don't seem to display any symptoms, but neither did

I! I have been wrestling with the decision of whether or not to test them,

make them GF, etc., especially since my oldest has decided he doesn't want

to eat anymore. Dinner time has become negotiation time! No one complains

(and I know it is normal for kids his age) but I don't see him eating and

it's been a while for a growth spurt and I've been trying to keep my " panic "

in check. My oldest did have a blood test run last year because they were

already drawing blood for something else, but of course, his results were

" inconclusive. " I know how dramatic of a lifestyle change it can be and