11 Month Old Slowly Starving To Death

[Jnkmnky]

Have you read the book Dangerous Grains? You can order it at Amazon. I think you're left with making a decision to include gluten grains in your diet, or not. After reading DG, I made my entire family gluten free. We've been very happy with the diet and encountered no problems. My celiac disease kid is thrilled that we've all joined him, of course. You know, if your child is feeling better on a gluten free diet, why question it? So a dr says she doesn't have celiac disease. She shows positive health changes on the diet. It's ok to make the decision to go gluten free and feel confident about your decision. People go vegan without a dr dx.

[amicamom]

Yes, I've read the book "Dangerous Grains" and enjoyed it. My husband and I have decided to put our entire family on a gluten-free diet for now. However, I really want to know what is wrong with Bethany and WHY. No one ever figured out what I had as a child and we haven't been able to figure out what is wrong with Bethany or Charity. I would like to know and it is frustrating that no one can give us any answers.

[Connie R-E]

This is where I have trouble with the doctor's interpretations of these tests! If a test result is 0, then 0 it is. But, less than 3 might be 2.5 and still a positive...

Less than 11(?) is still a positive to me.

My son is allergic to eggs. He had a very low score, so he was negative by the doctor...but, the poor kid has such terrible reactions to eggs--even at a very low score--he can't possibly eat them!!

Doctors don't know everything...especially about food sensitivites!

I think that if a gluten-free diet helps, then where is the harm in eating healthy?

Connie

gluten-free since 1-'98

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.

[ChristineE]

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}>

[ChristineE]

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}>

[amicamom]

Bethany had her visit with the pediatric gastroenterologist yesterday. He was a great doctor and actually took the time to explain everything very careflully. He said he gives lectures on celiac to other doctors and he seemed to be very up-to-date on the information he gave me. I had done so much web research that I think I would have known if he was a joke or not.

As expected, he can't do any more tests on her as she has been gluten-free for three weeks now. He says she is presenting as a CLASSIC CELIAC and that with the family history, he thinks she has it. However, he is going to work with us to find out for sure. He said the most important thing was to get some weight back on her so he sent me to their dietician and she spent over two hours going over the gluten-free diet with me. VERY HELPFUL!! I would recommend this for any newly diagnosed celiac. We are going to wait until she is two and then reintroduce gluten for a trial period and see what happens. In the mean time, they had me fax over my blood test results and they are going to look at them and see what the next step should be. I think it may be the gene testing. I am still on gluten so I may also have the biopsy if they think I should. We will just have to wait and see.

Bethany is doing great. My daughter Charity seems to be getting more and more sensitive to gluten after being off of it for three weeks. She snuck a piece of grahm cracker at my Mom's house yesterday and was literally on the floor rolling back and forth crying that her stomach hurt. YIKES!! I told my husband this all or nothing thing with gluten is for real. I explained to her that we have to be really careful about eating gluten or she will get another tummy ache. She is only three but I think she understands.

[tarnalberry]

Congrats on finding such a helpful doctor!

[key]

My son's pediatrician and pediatric GI doctor diagnosed my son by weight gain and change in his behavior! His blood tests were negative too, but he had a VERY positive change from going gluten free. THe tests are just not accurate in children. My son was 13 months when he got tested. Then I found out about celiac and thought it sounded just like him.

I went and got tested and my blood test came back borderline. I had tons of symptoms and had already been on the diet for 5 weeks when I got tested. The abnormal on my test was anything above 19 and mine was 17. My GI told me he believed that I had it and if the diet was making better to stay on it. He said that people that don't have Celiac would normally have a number of 0. My oldest son got tested for celiac too and his number was 0. I get very sick when I eat gluten now too. It stinks, because I think the longer I am off of it the more sensitive I am.

Anyway, my point is like others have said. The diet and how it changes your child is diagnoses enough. My husband is a physician and even read it in one of his books.

Good luck.

Monica

[Engineer2]

Amica's Mom,

There is not much medical research on this but as a mom with gluten-intolerance who has nursed two babies who also have gluten-intolerance, here is some info that should help. I've noticed that when I eat gluten, it affects my breast milk supply and quality. So not only did I have a problem that my extremely colicy, gluten-intolerant baby who was in pain and extended stomach from the gluten in my breast milk (this was long before I found out that gluten was causing her colic) but also eating gluten was affecting my breast milk supply. (I'm nursing another baby and have noticed the same thing with this baby also.)

When I ingest gluten, I have an over-supply of milk. Also it appears that gluten causes my milk to have a fore-milk/hind-milk imbalance where the baby is getting too much "thin" milk and never nurses long enough to get the higher-fat hind-milk. Also the the problems my babies have with gluten-intolerance means that the breast-milk makes their stomachs hurt which leads to the problem where they want to nurse and nurse and nurse... but they will keep arching back from the breast and scream and cry. I've heard other moms talk about having these same problems with their babies and they always think it's due to not enough milk so they start to give formula to their babies.... but when I suggest to them that it might possibly be the symptoms of an oversupply of milk... they just can't believe that gluten/wheat could possibly affect their breastmilk in that way.

All I can say is that once I realized what was going on and kept to a strict gluten-free diet, breastfeeding my girls has practically been a breeze and they both became very happy babies/toddlers/little girls who continue to grow tall and strong on a healthy gluten-free diet.

Good Luck!

Paula

[amicamom]

Hi!

It has been a little over two years since we took our little baby off gluten. I just wanted to check back in and update this post. Everything is going great! She is doing well off of gluten. She is still "thin" but tall for her age and thriving!! Since then we have found out that two more family members have the same issues.

I've written a couple of posts about our experience and tips on gluten-free cooking at my

Open Original Shared Link

Best wishes to everyone dealing with celiac disease!!

Here are some tips I've learned in feeding a family of 6 a gluten-free diet on $300 a month:

1. Plan meals and make a grocery list.

2. Do 90% of grocery shopping at Aldi (Wal-Mart if you don't have an Aldi). Aldi is cheap and very careful in their labeling of ingredients. They even have a website listing gluten-free foods and recipes here Open Original Shared Link

3. Do not purchase a lot of gourmet gluten-free items that you find at places like Whole Foods (tempting as they may be).

4. Make a list of everything you currently eat that does not contain wheat (gluten).

5. Portion Food!! I find this to be extrememely important when staying on a budget. This means to take a box of gluten free cereal and divide it into as many "breakfasts" as you think before the kids get a hold of it and have three bowls for breakfast just because they can. When I use brown rice pasta to make spaghetti pie, I freeze half of it so it can be used for two meals. If you just set the entire pan on the table, everyone will finish it just because they can. I portion everything out as soon as I bring it home from the grocery store. My girls help with this. I purchased a bunch of tiny plastic containers from the dollar store and we portion everything from peanuts and raisins to little boxes with two slices of cheddar cheese and two pieces of pepperoni for a lunch snack.

6. Limit snacking. A designated mid-afternoon snack of an apple or a banana is fine, but just grazing through the cabinets every time someone is bored, IS NOT ALLOWED.

7. We drink water. Period. No sodas. No juice. No milk. God intended for us to drink water and our bodies NEED it. I give orange juice when we are fighting winter colds, otherwise it just makes the kids hyper. They need the entire orange,not just the juice. They have milk on their cereal but we don't just drink it by the glassful because I don't think it is very healthy and I can't afford to buy the healthier varieties.

8. Nurse your babies.

9. My girls attend a Christian school so they pack a lunch each day. I purchased them nice thermal insulated lunch bags (from a consignment store) and they pack their lunch for the next day each afternoon when they get home from school. I have given a list of typical foods in the blog post. Usually it includes some of the following: cheese and pepperoni, a fruit, carrots and ranch, peanuts and raisins, yogurt or applesauce, a peanut butter rice cake or a piece of ham or turkey by itself. It could also include leftover from dinner the night before.

10. Focus on eating foods that are "normal" that you can have instead of trying to make all kinds of exotic gluten-free things. Gluten-free bread and bakery items just don't taste very good. Bob's Red Mill mixes are the exception but they are expensive so they are used for special occasions. This means that we don't eat bread. There are many other foods that we can it so we try to focus on them.

11. For dinner, try to focus on making a meal that consists of a meat (canned salmon, chicken, ground turkey, ham, pork chops, etc) and add veggies (salad, veggies tray, roasted veggies, slaw, peas, etc), add starchy veggies (potatoes, corn, beans, etc) and then add something like applesauce or canned pears for something sweet and tasty.

12. Skip desserts.

13. Use cornbread. We purchase stoneground cornbread from a local mill for $5 for a 10 lb bag. We eat a lot of cornbread. I have a recipe that does not use wheat. We like it with butter and honey on it. It can also be used as a topping on casseroles such as Mexican Sheppard's Pie.

14. You can still make casseroles!! Use sour cream and Velveta cheese (or something similar) instead of using wheat thickened "cream of mushroom soup," cream of chicken soup," or white sauce. One meal that I make regularly is to purchase a whole chicken from Aldi (usually costs around $3.50). I put it in the crock pot and cook it until it is falling off the bones. I debone the chicken and add cooked brown rice, chopped broccoli, sour cream, and Velveeta cheese to make a delicious chicken, brocolli and rice casserole. I divide the "mixture" into two casserole dishes and I have TWO meals. We eat one that night and I freeze the other one. The entire meal costs less than $5. If you have boys and are worried about having enough - just add corn bread and roasted veggies!! We have a rule that you can not have seconds until you eat your veggies. I do a similar thing with spaghetti pie.

15. Corn tortillas with melted cheese on them are cheap and great for lunches or snacks.

16. Don't eat out. It costs too much and it is very difficult to find gluten-free food at the cheaper restaurants.

17. Basically you just have to change your mindset. Focus on all the wonderful things God created that we CAN eat. Instead of whining about how we can't have french toast or muffins for breakfast, fix a delicous breakfast of bacon and omelets or gluten-free blueberry pancakes.

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

[Fiddle-Faddle]

Amicamom, thank you for the update. I only just saw your original post today, and was worried that, since I had not seen you post since I joined the board 20 months ago, that your baby had not done well. I'm so relieved!

I love all your suggestions, and am looking forsward to reading your blog!

[Fiddle-Faddle]

P.S. I think I know why your blood tests were all negative (or very, very low positive)--it looks like you all went off gluten BEFORE your bloodwork was done--so the triggering factor (gluten) was out of your system by the time they looked for evidence of anything being triggered.

But you probably already know that by now.

It sounds like you have an absolutely marvelous doctor!

[ptkds]

I checked out your blog! There are lots of great meal ideas on there. I printed up the cheeseburger casserole, but how much sour cream do you use? We can't wait to try it out.

Thanks!

[Collinsmom]

We are just going through the process of diagnosis ourselves for our 13 mos old ds. he had his endoscopy yesterday. Prior to that, he was vomitting multiple times daily, put no weight on for 3 mos and was sick constantly. Two weeks ago his blood work confirmed multiple allergies, including wheat. While I wanted to keep gluten in his diet until the endoscopy, he has been pretty much gluten free because of the wheat allergy. We noticed improvements immediately. His vomtting stopped immediately. On top of that, his appatite has doubled, he seems happier and he sure feels heavier to me.

I wish you luck. I don't have any new advice to offer except to agree with all the other posts. If you want an official diagnosis, you probably should stay on gluten. Given your history however, it sounds like gluten free is the way to go.

I have been a member of this board for only a short while, but already I have been amazed and greatful for all the experience, knowledge, and kindness of everyone on this board. This is a great resource and support group, and I hope you keep us all updated.

[Nancym]

Despite what doctors think they know, gluten does pass through breastmilk! There are studies out there that prove it.