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amicamom

11 Month Old Slowly Starving To Death

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Hi. This website has been a gift from God. I am excited and very thankful to find a place to ask questions about celiac disease in children. Please help me!!

Let me start with a few questions...

1. Has anyone ever had a very young baby present with celiac disease?

2. Has anyone ever noticed a reaction to baby rice cereal or formula?

3. How do you go about being tested for celiac if you are an adult and having no symptoms?

4. What is the best type of doctor to go to?

5. Please share your stories of infants or small children with celiac.

Let me share my situation...

I am a 28-year-old mother of four little girls. When I was around age six, I was having major problems with diarrhea, vomiting, and weight loss. I was skinny with a bloated stomach and looked like a starving child from Ethiopia. My parents took my brother and I to doctor after doctor without any relief. They tried everything and I was slowly starving to death. Finally, they visited a health food store and an Indian doctor who was in there suggested celiac disease and to take my brothers and I completely off of wheat and gluten. Within a few days, I had stopped vomiting and in just a few months I began to put weight back on. For the next four years, I stayed completely off of wheat and was fine. I was never tested for celiac disease by a doctor but my parents assumed that is what I had. My father became a pastor and our family moved across the country to take a small church in the south. "Miraculously" we began eating wheat again without any of the previous symptoms. We thought either we had outgrown celiac disease or the LORD had miraculously healed us as a blessing for my father becoming a pastor. Two of my brothers (who had similar symptoms to me) were also able to eat wheat again. None of us have ever had any problems again and we all eat a lot of wheat and gluten on a daily basis. If anything, we are overweight! We had all but forgotten our earlier years.

Fast forward 16 years...I have given birth to a beautiful little girl (third child for my husband and I) weighing 8 lbs 8oz at birth. I breast-fed her and began supplementing with a little formula since she didn't seem to be "getting enough". Around four months old, she is only weighing 10 lbs and looks incredibly skinny. She wasn't even registering on the growth charts! She had diarrhea and terrible diaper rash. The doctors scared us with cystic fibrosis but she tested negative. They didn't have any answers for us but suggested we start her on Nutramigen formula. We did and she began to gain weight slowly. She did not hit the bottom of the growth chart until she was 18 months old!! We started her on all the normal infant foods and she would occasionally have "blow-outs" with terrible diarrhea. We thought it was a milk allergy since she gained weight on the milk-free formula. She is almost four years old and has stomach aches after eating on an almost daily basis. I keep figuring it is just a little dairy slipping into her diet here and there. She is at the 50th percentile in growth now so I just figured she had lactose intolerance or something. Every time we take her to the doctor, they just check to make sure she has gained weight and that seems to be all they care about.

Two years ago, I read an article about celiac disease in a magazine and it suggested that you never outgrow celiac which shocked me! I realized that I might still have it and went to the doctor and requested a test. Since I was having no symptoms, my doctor would not perfom any tests for me! Even with the problems my two year old was having. I just let it go and continued eating wheat.

Now for my problem...

Last year I gave birth to my fourth daugther, Bethany. She was born at 7lbs, 11oz and 21" long (and completely healthy although she did seem a little flabby). I breast-fed her exclusively from the start because I did not want to repeat history. Around four months of age, she starts dropping off the charts. I am thinking, how can this be???? She is doing the exact same thing as her sister. I am thinking it must be that I do not have enough fat in my milk so I tried everything and nursed for hours and hours but it did not help. I thought maybe it was a milk allergy and some of the dairy was coming through my milk. When I got off milk, it did not help. She was getting worse and worse and having diarrhea so I stopped breast feeding and started the Nutramigen and rice cereal around 6 months. After a few weeks, she could not tolerate it. She was projectile vomiting and had awful diarrhea. I stopped the Nutramigen and just gave her rice cereal, baby food and apple juice. After a couple of months like this (with diahrrhea all the time and constant irritability) I have her down to just rice cereal with baby bananas and apple juice. At 10 months old this is a very limited diet. She is 11 months old right now and weighs 13.9 lbs. Her blood panel is showing low B vitamins, low potassium, and low iron. She is starving to death before our very eyes!! For some reason, the celiac disease came into my mind and I had a brain flash! What if it is celiac diease? I am thinking, but she didn't have any wheat! She has had cherrios and they have wheat flour in them but she has only had them very rarely. Could the baby rice cereal or Nutramigen have something like gluten in them? Just to test the theory, we took her off everything except baby food meats, veggies, fruits, and whole milk. Her diarrhea has stopped and she has had normal BMs for the past two days!! Her diaper rash is even going away. I have called my doctor and asked for a referral to a gastroenterologist. We do not have an appointment until Sept 15th. What should I do now?? Please send any helpful stories, information, or links.

This may be the answer for my other daugther who has stomach pains often as well as my sister who has had stomach problems for the last couple of years (and is very skinny as well). Thank you for bearing with me and reading all this. Sincerely, Rachel

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Sorry to hear that your children aren't doing well. You could have celiac disease (from reading your history) and since it is genetic, your childen may have it as well. I would find a doctor that will run the celiac blood panel on you and your children. You can also get a gene test done to see if you and your children have the celiac gene.

If you want an official diagnosis you must be consuming gluten or your test results could be false negative. If you do not care about an official diagnosis, then try the gluten free diet and see if it helps.

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My son was starving to death as well. Tests on young children are not reliable. I would go gluten free asap. There is no harm in a gluten free diet. Your children can suffer from irreversible learning disabilities as a result of nutritional deprivation at these young ages. My child is a year behind his age group. That doesn't sound like a lot, but it takes a lot of catching up just to be a year behind. With what I know now, I would make any child of mine who even looked SLIGHTLY like he/she was celiac GLUTEN FREE. Test later. Gluten free now while developmental milestones are critical to future success. 100% gluten free is the key. Gluten in the smallest crumb will negate your efhttp://www.chebe.com/forts.

http://www.kinnikinnick.com/

http://www.envirokidz.com/

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Guest taweavmo3

Hi! It sounds like your little girls have had a rough road, but hopefully you have found some answers. I know the hardest part for me was not knowing what was going on with my daughter. She was healthy until about 12 months, then she started going down hill. By the time she was 3, she weighed less than she did at 12 months, and she looked pitiful. She was also very irritable and cranky all the time, it was really stressful. Now we've been on the diet 6 months, and I have a happy, healthy little girl.

I also have a 17 month old son, who hasn't been tested yet, but I am pretty sure he has celiac disease as well. He looks healthy, but has had one ear infection after another, been hospitalized for a stomach bug as a baby, has had a funky strep infection on his toe, and has several stools a day. He's also intolerant of any dairy, and has been since he was born, just like my daughter. He is getting tested soon (if the ped will do it) but if the tests come back negative, he'll be gluten free no matter what.

I also want to second what jnkmnky said about developmental delays. Not all kids seem to be delayed, and are right on track with their peers despite being sick. But, my daughter has major delays. She isn't even close to being on the same level as other 3 year olds, and I don't know if the damage that has been done is something we can ever get back. You really don't know who is going to be delayed until it is possibly too late to play catch up. That is why my 17 month old will be gluten free no matter what.......at least until I know we have passed these crucial, brain developing years. I can handle the diet no problem, but brain development is nothing to mess with!

Good luck with everything, and stick around! You'll learn so much from everyone here.

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Wow I didn't think someone story go be as close to my son's life.

My son is now 26 mo and has been gluten-free since Feb. But I had a long hall to hall before Feb. My son was born July 2 2003 weighing 8 lbs 6oz and was 20 1/2 in long. (We have 5 children 3 girls and 2 boys and this is my youngest that I am talking about.) But with my first 4 children I had alot of trouble with my milk coming in and staying so with the first 3 I had stopped nursing between week 2 and 3 and put the kids on milk based formula and they did fine for a while and then had to switch all to soy. Child number 2 had to go all the way down to nutramigin formaul. Child number 4 didn't grow until I started her on formual and she did great after. Very health. Then came Braunson child number 5. The dr wanted me to nurse as long a possible because 3 out of the 5 have immundifency. One of those three are fine now. I have 2 still with that problem. So I was nursing thinking that I was doing the right thing and I had a LLN tell me to try Brewers yeast tablets to help me with my milk (malt in the ingredents). I found them at a health food store. I was taking 4 in the morning and 4 at night and my milk was doing great so I thought nursing was going to be great. My son started to get thrush all the time (about 6 weeks). After dealing with this for about 2 mo I stopped and my ped told me to put him on rice cereal and then oatmeal. So I did and that started trouble. At that point my son weighed almost 14 lbs. My son stopped gaining weight and growing. He was hopilized 3 times for pnemonia diahrea and for dehydration. When they put him in the hospital they would pull him off of all food and he would be better very soon. They would dismiss him and then go home put him back on food and you guessed he would be sick again. When he was on just formula and breastmillk he did fine. Then he would gain weight. At age 1 he weighed 16 lbs. In Feb he weighed 20 lbs and now weighs 27 lbs. He was having 10-18 stools a day. He had blisters on his bottom and then he would sleep for 20-22 hrs a day. He was very sick and looked very sick. We moved when he was 1 and this summer people said they didn't even know we had another son because one of us always stayed at home with him because he was very sick. All of my son's test came back negitive. I told you all of this to say she is to young to get tested don't waist your time and money because most likely they will come back negitave.

START gluten-free diet ASAP and she is young enough that she will most likly improve immediatly. I saw a huge difference in 4 days. He was down to 2-3 diapers and sleeping normal. If I would of know that all I had to do was put him on a gluten-free diet at age 4 mo and this would of all stopped I would of.

PS I would also go gluten-free with her and put you 4 yr old on it also.

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Guest nini

My daughter showed symptoms from birth. She has been gluten-free since she was 3 when I was dx with Celiac. she's 5 now.

My husband has been reading Dangerous Grains, and has now decided that our entire family should be Gluten Free...

The diet is healthy. If she improves (if you ALL improve) then you have your answer, some of you may not be having symptoms, but are still damaging your insides.

I say, go gluten-free. If it does not help, then keep pressing the Dr.s to find out why, but I'm willing to bet ya that this is it. AND, if you had it as a child, I hate to break it to you, but you never outgrow this. It just may be "silent"...

Feel free to e-mail me or PM me if you have any questions.

I don't have a whole lot of confidence in Dr.s after they missed this in me for 34 years. And yes, I've had symptoms of it since I was a baby too.

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Guest barbara3675

Take your children to a pediatric gastroentrologist at the most reputable medical facility in your area who will surely be up on the celiac issue. My granddaughter was starving to death at one year and is now seven and the picture of health because she was properly diagnosed in the beginning and has been totally gluten-free since then. As a result, I found that I am gluten intolerant and I feel a lot better too. I got tested through Enterolab, the full panel with gene testing too. I carry the gene. It is thought by some that the type of testing that Enterolab does will be the gold standard someday.

Barbara

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Tamara,

Hi. My son is now 7. He was dx at three. Your daughter can catch up *with a lot of work* on your part. :) You have two years before kindergarten, so just begin now. I don't know what her delays are, but you can strengthen all aspects of her social and cognitive skills by getting busy today. Get her holding crayons, pencils, using scissors, squeezing glue bottles, talking, enunciating clearly, jumping rope, doing sommersaults, pre- k workbooks, and anything else you can think of. Make it fun, no stress, no expectations, just focus on positive reinforcement for all successes no matter how small. If your daughter has speech delays *and you're in the U.S.* you can go to the school and ask how you get her into speech.. In my state, the school system takes over from the state beginning at age 3. Even if you're not sure if it's just cute baby-talk, take her for an evalutation *it's free*, and tell them she has celiac disease, which is a disability. They will (if they're comparable to my U.S. state) evaluate her and if needed, give her free speech services NOW!!!!! This is majorly beneficial to school success in the future, that's why the service is provided prior to beginning school. Now, the state of VA, gave me some headache about his need for physical therapy, but the state I'm in now has bent over backwards to accomodate ANY potential delay, including memory problems, and physical therapy. My son existed in a mental fog for the first three years, so he has some trouble associating words with mental images. This causes him to "forget" words he should know. He spends searching for words even though he can picture it in his mind. I've been assured that this can be fixed by a lot of reading, pictures, and reinforcement ... I didn't know all of this when he was dx, so I didn't concentrate on making up for those lost years. Your child will benefit from anything you do now. It's either work today, or work twice as hard in a few years. :blink: Either way, it's all work, right? Might as well make it as useful as possible! :D

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Hi.  This website has been a gift from God.  I am excited and very thankful to find a place to ask questions about celiac disease in children.  Please help me!!

Let me start with a few questions...

1.  Has anyone ever had a very young baby present with celiac disease?

2.  Has anyone ever noticed a reaction to baby rice cereal or formula?

3.  How do you go about being tested for celiac if you are an adult and having no symptoms?

4.  What is the best type of doctor to go to?

5.  Please share your stories of infants or small children with celiac.

Let me share my situation...

I am a 28-year-old mother of four little girls.  When I was around age six, I was having major problems with diarrhea, vomiting, and weight loss.  I was skinny with a bloated stomach and looked like a starving child from Ethiopia.  My parents took my brother and I to doctor after doctor without any relief.  They tried everything and I was slowly starving to death.  Finally, they visited a health food store and an Indian doctor who was in there suggested celiac disease and to take my brothers and I completely off of wheat and gluten.  Within a few days, I had stopped vomiting and in just a few months I began to put weight back on.  For the next four years, I stayed completely off of wheat and was fine.  I was never tested for celiac disease by a doctor but my parents assumed that is what I had. My father became a pastor and our family moved across the country to take a small church in the south.  "Miraculously" we began eating wheat again without any of the previous symptoms.  We thought either we had outgrown celiac disease or the LORD had miraculously healed us as a blessing for my father becoming a pastor.  Two of my brothers (who had similar symptoms to me) were also able to eat wheat again.  None of us have ever had any problems again and we all eat a lot of wheat and gluten on a daily basis.  If anything, we are overweight!  We had all but forgotten our earlier years.

Fast forward 16 years...I have given birth to a beautiful little girl (third child for my husband and I) weighing 8 lbs 8oz at birth.  I breast-fed her and began supplementing with a little formula since she didn't seem to be "getting enough".  Around four months old, she is only weighing 10 lbs and looks incredibly skinny.  She wasn't even registering on the growth charts!  She had diarrhea and terrible diaper rash.  The doctors scared us with cystic fibrosis but she tested negative.  They didn't have any answers for us but suggested we start her on Nutramigen formula.  We did and she began to gain weight slowly.  She did not hit the bottom of the growth chart until she was 18 months old!!  We started her on all the normal infant foods and she would occasionally have "blow-outs" with terrible diarrhea.  We thought it was a milk allergy since she gained weight on the milk-free formula.  She is almost four years old and has stomach aches after eating on an almost daily basis.  I keep figuring it is just a little dairy slipping into her diet here and there.  She is at the 50th percentile in growth now so I just figured she had lactose intolerance or something.  Every time we take her to the doctor, they just check to make sure she has gained weight and that seems to be all they care about.

Two years ago, I read an article about celiac disease in a magazine and it suggested that you never outgrow celiac which shocked me!  I realized that I might still have it and went to the doctor and requested a test.  Since I was having no symptoms, my doctor would not perfom any tests for me!  Even with the problems my two year old was having.  I just let it go and continued eating wheat.

Now for my problem...

Last year I gave birth to my fourth daugther, Bethany.  She was born at 7lbs, 11oz and 21" long (and completely healthy although she did seem a little flabby).  I breast-fed her exclusively from the start because I did not want to repeat history.  Around four months of age, she starts dropping off the charts.  I am thinking, how can this be????  She is doing the exact same thing as her sister.  I am thinking it must be that I do not have enough fat in my milk so I tried everything and nursed for hours and hours but it did not help.  I thought maybe it was a milk allergy and some of the dairy was coming through my milk.  When I got off milk, it did not help.  She was getting worse and worse and having diarrhea so I stopped breast feeding and started the Nutramigen and rice cereal around 6 months.  After a few weeks, she could not tolerate it.  She was projectile vomiting and had awful diarrhea.  I stopped the Nutramigen and just gave her rice cereal, baby food and apple juice.  After a couple of months like this (with diahrrhea all the time and constant irritability)  I have her down to just rice cereal with baby bananas and apple juice.  At 10 months old this is a very limited diet.  She is 11 months old right now and weighs 13.9 lbs.  Her blood panel is showing low B vitamins, low potassium, and low iron.  She is starving to death before our very eyes!!  For some reason, the celiac disease came into my mind and I had a brain flash!  What if it is celiac diease?  I am thinking, but she didn't have any wheat!  She has had cherrios and they have wheat flour in them but she has only had them very rarely.  Could the baby rice cereal or Nutramigen have something like gluten in them?  Just to test the theory, we took her off everything except baby food meats, veggies, fruits, and whole milk.  Her diarrhea has stopped and she has had normal BMs for the past two days!!  Her diaper rash is even going away.  I have called my doctor and asked for a referral to a gastroenterologist.  We do not have an appointment until Sept 15th.  What should I do now??  Please send any helpful stories, information, or links.

This may be the answer for my other daugther who has stomach pains often as well as my sister who has had stomach problems for the last couple of years (and is very skinny as well).  Thank you for bearing with me and reading all this.  Sincerely, Rachel

<{POST_SNAPBACK}>

I don't have anything to offer you except to agree with all the others who say go gluten-free right now - no delay. I am writing primarily to say - do not let any doctor tell you what test he will allow for you or for your children. You will have to be assertive if you are going to protect yourself and your children from the ego and ignorance of doctors. Tell him that you (or your child) is the patient and you or your insurance pays his fees. It is your body and your money. Take both elsewhere if he doesn't like those terms. Claire

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Guest taweavmo3

Thanks for the info jnkmnky.......it's good to hear my little girl might be able to catch up. The way you described your son sounds alot like Emmie. She has the hardest time retaining even the smallest bits of information. I can work on one color with her over and over again, and five minutes later, she'll forget. She also can't answer questions, unless it's with a yes or a no. Like if I ask her what she did today, she doesn't really understand what I am asking her and she'll just say something random. Her speech is the biggest delay, I can only understand about 20% of what she says, and to everyone else it's all jibberish. I am kicking myself for waiting until she was 3, we have a great program here in Texas for kids under 3. After they turn 3, the school system takes over, and it's less than ideal.

I've gotten the evaluation process started within the school system, but it is SLOW. We had her hearing/eye screening last week, and I turned in the paperwork. The diagnostician said it can take up to three months just to get an evaluation, then longer to get results and actually get therapy started. I would go through an independent speech therapist/OT and PT, but we have a hefty deductible for that, and have to pay for 20% of the total. I'm going to be going back to work soon, primarily in preparation to get Emmie into some additional therapy. I really don't have alot of faith in the school system to give her all the help she needs, given the fact that it takes so long just to get her looked at.

Thanks for the ideas......I figured there was something I could be doing at home to help my little girl, I just didn't know what, since the usual methods I used with my first child don't seem to help Emmie. Hopefully with alot of work, she will be able to catch up.

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Thank you all so much for your support and advice!

We have put Charity (our 3-year-old) and Bethany (our starving 11-month-old) on a gluten-free diet since Sunday. Bethany's diarrhea has stopped already! I am so excited. I am in the process of trying to be tested myself. I think Charity and I are going to get the blood test and depending on what they say, consider the small bowel biopsy.

Would someone be so kind as to send me a link or tell me about Enthrolab?

What are your favorite lists of mainstreem gluten-free foods. My Mom wants a list because she wants to start my 16-year-old sister on the diet but my sister is complaining that she won't be able to eat anything.

Thank you again for replying to this topic and helping me!

-Rachel

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Thank you all so much for your support and advice!

We have put Charity (our 3-year-old) and Bethany (our starving 11-month-old) on a gluten-free diet since Sunday.  Bethany's diarrhea has stopped already!  I am so excited.  I am in the process of trying to be tested myself.  I think Charity and I are going to get the blood test and depending on what they say, consider the small bowel biopsy.

Would someone be so kind as to send me a link or tell me about Enthrolab?

What are your favorite lists of mainstreem gluten-free foods.  My Mom wants a list because she wants to start my 16-year-old sister on the diet but my sister is complaining that she won't be able to eat anything. 

Thank you again for replying to this topic and helping me!

-Rachel

<{POST_SNAPBACK}>

This is the Enterolab website: http://www.enterolab.com/ Claire

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Things I wish everyone knew about celiac:

1.) You're born with it, you will die having it, and you will live all your years inbetween being celiac--whether it shows itself or not!

--You don't "outgrow" it, your body becomes stronger and "lives" with it better. That is why it is easier seen in the very young and the very old--their immune systems are not strong enough to handle it at all.

2.) If your baby has food related symptoms (diahorrea, bloating, gas, vomiting, constipation, rash, crankiness, failure to thrive, ect... , then consider celiac--quickly!

3.) If you breastfeed, gluten will "go thru" with the breastmilk.

--The Mom has to be gluten-free for the baby to truely be gluten-free.

4.) After you stop eating gluten, secondary food allergies will have a chance to show their stuff!

--You can have many food allergies, but the worse will be the one you notice. After you get the worse out of the way, the 2nd worse will be the new worse--and so on... ...Keep going! :P

5.) The tips of the villi is where dairy is digested.

--You may have to let them grow back to consume dairy without unpleasentness.

6.) If you eat even a fraction of a gram of gluten, you will do damage to yourself!!!!

--You might not notice it, but your villi will! (They detach, and your body goes thru a "gluten reaction" for upto a week--for each occurance.)

7.) In this country, doctors don't have a "celiac" clue!

8.) If your'e doctor diagnosed, you might have trouble obtaining or keeping health insurance.

9.) If you have trouble with any part of your digestive system, the food you have eaten should be suspect.... (it is a closed system, after all!)

10.) Just because a gluten ingredient isn't listed on the package doesn't mean the food is gluten-free!

--Rice Dream uses a process that uses barley in the manufacturing of their milk, but barley isn't an ingredient!

Cross-contamination is always an issue...

11.) Celiacs are great, friendly people who try to help from their experiences!

Any other things to add??

Connie

gluten-free since 1-'98

I'm not a doctor (obviously!) or anything above being an opinionated, well read, and experienced Celiac Mom of a Celiac Boy.

Take all opinions with a lot of thought, common sense, and a grain of salt!! ;-)

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We have put Charity (our 3-year-old) and Bethany (our starving 11-month-old) on a gluten-free diet since Sunday. Bethany's diarrhea has stopped already! I am so excited. I am in the process of trying to be tested myself. I think Charity and I are going to get the blood test and depending on what they say, consider the small bowel biopsy.
If you want accurate blood test results you must be consuming gluten. If you get tests done on a gluten free diet you can get false negative blood test results.

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My almost 6 year old son was just diagnosed via bloodwork and endoscopy just a couple of weeks ago. The Pediatric GI Surgeon said you need 3 things to have Celiac Disease.

1) exposure to gluten, so an infant consuming ONLY breast milk is not exposed (his words). Once the child starts eating solids, s/he is exposed to gluten.

2) the gene for Celiac disease

3) a triggering event.

The doctor said the triggering event could be pretty much anything.

My son at 5.5 years old weighs 34 lbs (below 10% on the growth chart) but is around 25% for height. He presented none of the "classic" symptoms, he was tested because of low weight and anemia.

Now the gluten-free adventure begins!

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Guest nini
My almost 6 year old son was just diagnosed via bloodwork and endoscopy just a couple of weeks ago. The Pediatric GI Surgeon said you need 3 things to have Celiac Disease.

1) exposure to gluten, so an infant consuming ONLY breast milk is not exposed (his words).  Once the child starts eating solids, s/he is exposed to gluten.

2) the gene for Celiac disease

3) a triggering event.

The doctor said the triggering event could be pretty much anything.

My son at 5.5 years old weighs 34 lbs (below 10% on the growth chart) but is around 25% for height. He presented none of the "classic" symptoms, he was tested because of low weight and anemia.

Now the gluten-free adventure begins!

<{POST_SNAPBACK}>

Those three things are so inaccurate it is not even funny.

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Those three things are so inaccurate it is not even funny.

<{POST_SNAPBACK}>

How so? I am new to Celiac, so please explain why these are inaccurate.

Thanks.

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Guest nini

the first one, YES THE INFANT CAN GET GLUTEN THROUGH BREAST MILK... if the mother is consuming gluten, the infant can still be reacting to it. Most medical dr.s are not willing to admit that the protein can make it into breast milk, but medications can, and just a molecule of gluten is enough to cause a sensitive individual to react.

the gene for celiac, unfortunately they don't know enough about genetics yet to definitively say that one particular gene is the only one that causes celiac, besides, gluten is toxic anyway, no one should be consuming it. Read Dangerous Grains...

a triggering event, a triggering event will only make you aware of SYMPTOMS... it will not signal silent damage being done inside.

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Hi~ My daughter is 2 1/2 and was dxed w/celiac last year in October. She was still nursing at 18 months when we hit her *trigger*. It was a round of antibiotics for an ear infection. She developed direaha (sp?) that never went away. We assumed it was C-Diff at first but when that came back neg my Ped said she was afraid it was celiac. Her blood work came back off the charts for an adult even though she was 20 months at the time of the blood draw. We had the biopsy scheduled asap and her villi were completly gone. We went gluten-free that day on October 20th 2004. She was a different kid in a week. She had looked exactly as you described-an etheopian baby. Her stools returned to normal and she gained 6 lbs in 10 weeks! By Christmas she looked NORMAL. And acted so much happier!!! The diet has been much easier than I thought it would be. I get all my online foods from www.glutensolutions.com as I think they have the biggest variety. I make her bread, cookies, cakes, pancakes etc all by hand every week but it has become routine now. She was our second daughter and no one else is affected so far. Im due with our third baby, a boy, in December. I do worry he might have it too, but if he does, ill know how to feed him!!! Get you baby tested ASAP!!! Do not stop hounding your Dr. Just get it done!!! Good luck!

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My son had the "Ethiopian look" at 18 months and had not grown for about 4-5 months. We had done ultrasounds of his stomach to see if there was a growth there or what. Then his blood test cam back positive for celiac, the endoscopy was "classic" celiac and we went gluten-free the next day. He never had the bad diapers, but he had weeks where he would throw up everything except drinkable yogurt and milk. After 1 week he was acting like a different boy and after 1 month he was eating us out of house and home again. I found that same estimate somewhere on the web when all this started and for us at least it was true. Our whole house is gluten-free with a few exceptions for my daughter. My husband is celiac and I just get my wheat eating out at lunch. I'm wondering if my daugher is sensitive (even though blood work cam back negative, she is 5) since she doesn't like most crackers and such. We eat a lot of fresh meat, vegetable, fruit, rice and potatoes now. We are getting tortilla chips and cheetos and haven't had any bad reactions (my husband is really sensitive), but I am always checking labels.

My advice is just to go gluten-free. It's a very nice diet...get Manna from Anna for your bread (it's a mix and the whole family loves it) and you can try the pastas until you find one you like. I haven't really liked any I've tried yet but the rest of the family does. Then again, I used to make my pasta and maybe I'll try that again.

Do whatever you can to get you family healthy. The dairy sensitivity can show up too. Luckily we haven't had that one.

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Thank you all so much for your help!

We took little Bethany in to be weighed this morning (they are monitoring it very carefully) and she had gone from 14 lbs last Thursday to 16.5 lbs this morning!! The nurse and I could hardly believe our eyes! She has followed a gluten-free diet since Sunday and her diarrhea has stopped completely and her appetite has picked up. She still has diaper rash but I think it is going to take a while for it to heal. I told her doctor that he would give me and two of my daughters the Complete Celiac Panel or we would find another doctor. They drew my blood this morning and we are awaiting the results. I have to take Charity and Bethany to the hospital to have theirs drawn because the doctor's office doesn't have small enough needles.

Personally, I am 100% sure it is celiac. However, I have a husband and two sets of grandparents who want to know for sure. I am a little unsure of what to do. I have read online that the blood tests are not very accurate (especially in children under 5). Everyone is afraid of EnteroLab because it is expensive and is not a "doctor" in a "hospital." They are afraid it is some kind of quack method or something. I appreciate any and all experiences with testing if you would be so kind to share. Part of me is terrified my blood will come back negative and the girls will be negative and no one will believe me. They can't argue with the weight gain in Bethany and I am putting the girls on a gluten-free diet NO MATTER WHAT. I will be honest, I don't really want to go gluten-free. I did when I was a child from age 5 to 10 and I got so SICK of ricecakes and corn tortillas and not being able to have pizza or toast or mac and cheese. I dread giving up my bread and crackers. Thankfully, it looks like there are a lot more options with foods available now. They are building a Whole Foods Market in our town right now. We don't have a lot of money and I dread trying to find cost effective gluten-free foods. I know it is my job as a mother but I am just sharing my fears. Thanks for listening. :) This board has helped more than anything else!

If anyone is interested, I have a Gluten-Free diet in PDF format from my sister-in-law who is a nurse and it seems more detailed and informative than most things I have found on the web. It is more "medical" but I found it helpful. I will be happy to email it to you if you send me an email.

Rachel

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I am so happy your daughter is doing well. But as far as relatives not believing you who cares. My in laws are very anti medical. THey think dr are crazy and if the test don't show positive then it is not true. But my son didn't have a postive dx but my inlaws see how well my son is doing and they applaude the diet. They say we can see how well he is doing and to keep doing it. I would care very little what they think any way.

We don't have much money either but we have learned to do stuff cheap. We make all of our own bread. I make homemade graham crackers, I make alot of cassoroles with homemade cream soups. I don't know where you live but our nearest health food story is several hrs away, so we don't even use them.

I know my son gets tired of ricecakes and corn torillas but I try to hid them in food and get creative on how to use them. I grill torillas and I put frosting on the graham crackers and peanutbutter on rice cakes.

Good luck with your test but in my oppinion I wouldn't get tested because they can use that against you for insurance. They can make you rates go up. If you just go gluten-free and see positive dietary response then you know to stay away from it and then it is not on you medical record. Just something to think about. Good luck with you diet. You know that you have alot of knowledgeable people on this website to ask questions to.

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Post fruity and cocoa pebbles

bushs baked beans

oscar mayer hotdogs and bologna

Classico alfredo sauces

Thai kitchen products (most, not all)

Old el Paso taco sauce in the jar*

Velveeta cheese

Lays Stax potato chips

Chili

beef stew

chicken rice soup

pea soup

tacos

http://www.chebe.com/

http://www.kinnikinnick.com/

I don't have celiac disease, but I'm gluten free. I have no problem maintaining the diet because there is SO much available nowadays. Don't compare the diet to the diet 15 years ago. It's changed dramatically just in the past 4 years my son has been on it. Not kidding.

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My daughter was diagnosed and went gluten-free at age 3. She was irritable, had diarrehea, bloating, gas, etc. She was the same weight/height as age 2. When I look at pictures of her from age 2-3, I feel like a terrible mother - she was thin, pale and just looked generally unhealthy. She is almost 9 now and very healthy, normal, intelligent young girls. The diet is amazing. Within 2 weeks, her mood had dramatically (she was MISERABLE pre-diet), her GI symptons disappeared. She begin gaining weight and growing within 6 months.

She is gluten-free and well aware of foods she can and cannot eat. I am beginning to teach her how to read labels and question new foods (she is a picky eater so I don't have to worry too much about her experimenting). If she is offered a new food and is unsure if she can eat it, she doesn't. She is a first born and generally a rule follower but I think in some way, she remembers how horrible she felt before the diet and doesn't want to harm herself. Her friends and school (preschool and elementry) have been fabulous about her diet. Our family and her close friends' mothers try to keep gluten-free food on hand for her and consider the treats they hand out at birthday parties to be sure she gets something gluten-free.

I tell you this to show you that life can be "normal" even though you and your kids may have special needs. It all depends on how you look at it. Being celiac is part of who she is. Although I will cook wheat pasta for myself and my husband, we always have gluten-free for her. Her younger sister eats gluten-free food like it is "regular" food and shows little preference over either (I wish I could say that for my husband and I). Other than pasta, I rarely cook a meal that she cannot eat and look for reciptes that are gluten-free or easily adapted to be gluten-free.

Good luck - you will be so happy to have your kids back, healthy and happy!

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Celiac Disease Comprehensive Panel tests are back...I AM FLABBERGASTED TO SAY THE LEAST...Charity, Bethany and I all tested NEGATIVE for Celiac Disease.

Bethany - TTG Antibody IGA <3 (negative is anything <5)

Bethany - Gliadin Antibody (IGA <3 (negative is anything <11)

Charity - TTG Angibody IGA <3 (negative is anything <5)

Charity - Gliadin Antibody <3 (negative is anything <11)

The lab did not perform the rest of the panel based on this information.

Me - TTG Antibody, IGA <3

Me - Gliadin Antibody (IGA) 8

IGA, Serum 212

The lab did not perform the rest of the panel based on this information.

I don't know what to think now. Of course, I am thankful we do not have celiac disease. However, I was certain this was the answer to my babies problems. What do I do now? Bethany is obviously thriving on a gluten free diet so I know there must be some kind of sensitivity. She is still scheduled to see a GI doctor next week.

The above tests did not even show a SENSITIVITY to gluten, right?

What should I do now?

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