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My First Post- About My Son
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Hi-

This is my first post. I am glad there's a board like this. A little about my situation:

My son Jake will be 8 years old in November. A doctor has finally decided to test my son for Celiac Disease. For the last three years, I have mentioned my concerns to my pediatrictian that my son has not gained any weight. He hit 40 pounds in Kindergarten and stopped there. He is still 40 pounds 2 years later beginning 2nd grade. I have mentioned my weight concerns to two different doctors at the old doctor's office only to be blown off by them, and twice to my son's new doctor who assured me that if he is still growing in height, he's fine.

One doctor from the last office actually said to me, "You're so used to seeing fat kids that you forgot what a healthy kid looks like." Yeah, I must be stupid.

My son has lost so much muscle tone that over the summer I felt fear when I would watch him take his shirt off and jump in the pool with other kids. I kept trying to feel reassured by the doctor's words that he was fine. FOUR TIMES in the last TWO years I have tried to get a doctor's attention about my son's thin frame, tiny wrists, lack of muscle tone, and bony appearance. Not one of them was concerned that he hadn't put on a pound since Kindergarten. His feet have not grown much either, with me buying a 12 1/2 everytime we go shoe shopping since I'm not even sure when.

I had such a nagging dread looking at him play this summer- I knew deep down something was not right. Even when I took him to this last appointment, where my son had developed a bump under one of his nipples- I mentioned that he is in the 5th percentile for weight but the 50th percentile for height- and the doctor said he was fine and set us up with an endocrinologist to have his hormones checked to discover why he had a bump under his nipple.

The endocrinologist was the doctor who examined my son, said he was underweight, and screened him for Celiac as well as hormonal problems. It hit me then that these doctors had continually blown me off and allowed my son to become mal-nutritioned, and all these years have gone by with my son slowly starving and becoming malnourished. I am very angry. I am relieved, and at the same time I feel anger.

My son recently began needing glasses because he found it hard to see to the back of the classroom. I have recieved "poor mothering" looks from the dentist because my son always comes back with another cavity. I have recieved stares from my husband's sisters who gawk at my kid while he's running around in his bathing suit with his cousins. I have had other mothers say they thought I wasn't feeding him properly, that I should force him to eat more and I must be doing something wrong otherwise he wouldn't seem so skinny. I must be depriving him of nutritious meals.

I never considered Celiac because my son had a little girl in his preschool class with it and since he had a peanut allergy, the mother and I would talk. She discovered her daughter had it early because of stomach pain and bloating. I assumed those were prominent symptoms. Jake has NEVER complained of any stomach ailments. He has never had vomitting, foul smelling stools, diahrea, pains or any of the stomach symptoms. He HAS had a poor appetite, a craving for junk foods while picking like a mouse at his meals, and the fact that he has stopped gaining weight and looks WAY TOO thin. Recently, he had a bloody nose in school, and then again in the middle of the night. That was last week.

The endocrinologist also ordered an x-ray of my son's hand. His bone density is that of a 4 1/2 year old child, and he will be 8 in two months. I am not furious with the doctors- but hurt. I am hurt that they blew me off time and again when I voiced my concerns, and that stupid me- I allowed myself to be reassured by their casual responses.

You will be seeing me a lot more on here, because this is much different from the peanut allergy my son has. That was a piece of cake in comparison to this. I notice that there are NO LISTS anywhere of name brands that are safe that can ne bought in a grocery store.

The hormone tests seemed to be fine. I don't know if the bump under his nipple is related or unrelated to Celiac. The doctor said 95% of the time they won't ever find out what is causing it. He had liver tests and hormone tests that came back OK.

My son will be seeing a gastroenterologist October 5th. Isn't that a long time to wait? I don't understand why they aren't treating this like an emergency. I know they will want to "put him under" for an endoscopy or a colonoscopy. I am concerned about them doing this while his body is in this compromised state. If he's been malnourished for the last 3 or four years, is it wise to put him under? Isn't him responding to the diet and passing another screening a clear enough indication that he has it? Thanks.

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Sharon,

I am so sorry to hear that you have had such a horrible experience. I can totally relate becasue I was given the same run around by my doctor AND my BIL ped. We, too were sent to an endocronologist to determine why he was not growing. It took an intestinal crisis and a 12 day hospital stay for us to figure out his gluten intolerance. I look back and, you know what they say, hindsight is 20/20. It all makes so much sense AFTERWARDS!

You are an excellent mother who turned to all the right people to help you figure out what was wrong with your son. Thankfully, the endocronologist picked up on the Celiac angle.

Yes, to a worried mother October 5th seems so far away. It is a problem many moms face... do I take my child off of gluten and see what happens, or do I knowingly feed him gluten in hopes of acquiring the 'golden' diagnosis of a positive biopsy. If you want to know if it has damaged his intestines... you'll need to keep him on his regular diet until a biopsy has been obtained.

If your son has elevated antibodies to gliadin, positive bloodwork, then he most likely has a gluten intolerance. The fact that he isn't growing could definitely point to a malabsorption issue in the intestines. But depending on your GI and how many samples are taken and from where... the villi damage could be missed. So, an inconclusive or negative biopsy doesn't always indicate a free and clear signal. The response to a gluten free trial will be your best answer.

My son had positive bloodwork, but an inconclusive biopsy and was NOT given a definitive diagnosis. Just a 'let's try a gluten-free diet and see.' Well he thrived on it and grew 4" and gained 7pounds within the first 6 months being gluten-free. The GI wanted to give us a definitive diagnosis by challenging him to a 2 month diet of gluten and rescoping him. Due to the fact that my son has a severe reaction to a small amount of gluten, I couldn't see subjecting him to 2 months of poisoning in order to damage his intestines so the doctor could feel more confident in a gluten free prescription.

Only you and your doctor can determine the necessary course of action for your son. You will have to decide what you are willing to live with... can you, and more importantly he, keep him on a gluten-free diet for life without the 'gold standard' diagnosis? Will you/he question yourself or the diet, especially in light of his non-intestinal response?

It is a most personal decision you will have to make on behalf of your son. I would do as much research on the subject as possible and in light of what you learn and understand, make your decision. Going in to the GI office well informed will be helpful in determining the best path to a diagnosis.

God bless you on your journey and keep asking questions... there are many people who have answers... weigh them wisely for most of us are just giving opinons based on what we know to be true in our own experiences! :)

(Personal disclaimer: I am NOT a doctor, nor do I play one on t.v.! :) I am just a mother of a gluten intolerant child who has read and chatted with others in the same boat. Please feel free to challenge me or point me towards any research and information, I'm always searching!)

Priscilla :)

"Cleaning your house while your kids are still growing is like shoveling the walk before it stops snowing." --Phyllis Diller

SAHM to 3 beautiful boys and one adorable girl

Kyle - 6

Matthew - 4 (Gluten Free since 11/03)

Andrew - 2 (Gluten Free since 7/04)

Abigail - 7 months (staying gluten-free until ?)

My hands are full, but my heart is not! ;)

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Welcome. I'm glad you've found the problem, though sad about all you had to go through to get the answer.

There are some lists out there with mainstream processed products that are supposed to be gluten-free (search around the archives for a while and you'll find them, I don't have a list handy), but many of these are a potential source for cross contamination as well, which (among other things) leads me to sticking to whole foods and doing the cooking. (Don't worry, there are plenty of people here to take advatage of the wide range of common brand and speciality items that are gluten-free and are doing just fine, so I don't mean to say you HAVE to cook everything from scratch. :-) )

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Sharon,

First, you are in a great place and welcome! You will find many helpful parents here.

My son was just diagnosed in June, but he's only 2 1/2 and we didn't have the experience you are having. Fortunately. That said, I can assure you that "putting him under" for the endoscopy is no big deal. My son came out of it within a half an hour and immediately requested food...and then ran around playing the rest of the day. When he had his hernia surgery a week later, however, he did not bounce back as quickly as it was a totally different anesthesia. So, don't be nervous. It's very mild.

As for mainstream lists, there are a ton out there. You can buy one from CSA-America (their new version should be out in October) and you can also get lists from a variety of other places. One very good one is at the Delphi Forums message board for Celiacs (another message group I frequent) www.delphiforums.com select health/wellness and then the Celiac group.

Bridget Calacci

Mother of Brennan, 2 1/2 years old, dxd in June 2004

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Hi Sharon,

My daughter was diagnosed at 8-years old, so I understand your need for a "mainstream" product list. I also use the CSA list however, I find this list even more helpful http://homepage.mac.com/sholland/celiac/GFfoodlist903.pdf

Be sure to check the latest ingredient lists because sometimes the product formulations change. My daughter (and my 6 year old son) also have peanut/tree nut allergies.

If your son already has some favorite foods that happen to be gluten free this wil help ease his transition.

Also, some favorite gluten-free "kids meals" in our house are:

Welshire Kids Gluten Free Chicken Nuggets (with Heinz ketchup, and veggies)

Hebrew National Beef Hog Dogs (no bun) and B&M Baked beans,

Baked Potatoes with gluten-free toppings

Kinnickinick gluten-free Pizza Crust with Classico Sauce and Cabot Mozz. Cheese

Hormel Chili

Dinty Moore Beef Stew

Mary Kitchen Corned Beef Hash

Also on this board a lot of parents shared what they pack their gluten-free kids for lunch. This will be helpful to you as well... do a search under "parents of kids" and the "products" sections.

Of course, whole foods cooked from scratch are best for everyone, but one or two meals a week that are "quick and fast" before a soccer game or whatever are needed too!

Good Luck. Don't beat yourself up.... you have followed your instincts and your son is being tested...

If you do find he has celiac he will be better soon... it is amazing how dietary changes can make such a huge impact. Let us know how his appointment with the gastroenterologist goes.

Take Care,

Ruth

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Ruth,

I am so glad you posted that list link. I couldn't find that one to give her, the only one I could remember was the delphi forums one. Between the list you gave, and teh delphi one, I have a great variety of foods to choose from. I think it's funny that all three of these lists have things the others don't. I took all three, and combined them with my own information, and I'm armed and ready!! :-)

Bridget!

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I heard the Welshire Kids nuggets are not being produced any longer, they are looking for someone else to make these apparently. Sigh.

I also use the Mrs. Leepers pasta meals. They are sort of a like a hamburger helper thing, but they are GREAT. There's a chicken alfredo one...you can add the chicken or not. My two year old loves this. And there are some other flavors too, I know there's a stroganoff one and a lasagna, and there's one more I've seen.

Bridget

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Hi Bridget,

I was wondering why I couldn't find those Chicken Nuggets! UGH!

I did hear that Ian's is coming out with a gluten-free chicken nugget... I'll let you know if I find them.

I've never used the Delphi forum list. I'll be printing it out today, Thanks!

It is interesting how overtime you find what gluten-free products suit your situation and it becomes like second nature to buy them. I now know what stores to go to, what isles to go to, etc. for specific products. The only issue becomes when products are discontinued, or the ingredients change. This will be an ongoing adventure I guess.

Take Care,

Ruth

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Thanks to everyone who's replied so far. It's important that some things remain the same for my son.

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I heard the same thing about Ian's...and he's got an allergen free fish stick too!!! My son will be in heaven if I can ever find these things. I haven't been successful yet, but I think they were just introduced recently so fingers crossed....

Bridget

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Hi Ruth-

For some reason, when I click on the mac link, I'm taken to a page where I'm told that the page does not exist. Is there a typo in the link? Thanks- Sharon

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I'm trying to register on the Mac site, and it's asking me if this is my first Macintosh computer, and what am I going to use the computer for- home or business. Am I at the correct website? I'm getting a funny feeling I'm at the wrong Mac website. :unsure:

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Hi,

My son is 3 1/2 and was diagnosed a couple of months ago by his allergist. His pediatrician was cluless. I wanted to take him to the allergist at 2 but he wanted to do a basic food allergy test first -all were neg. The delayed rast couple of months ago revealed he is very allergic to a number of things. Since being off gluten and these allergic foods his behavoir is better at home and pre-school as well as his consentration. I had some tests done for deficiencies at spectracell labs and put him on Metagenics ULTRACARE for KIDS which is a nutritional shake and he loves it. (added some pure stevia sweetener)( Would like to tell off his DR. but instead I am going to give him a copy of D. Korns Kids with celiac disease book. Maybe it might help someone else get diagnosed earlier.

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I also feel resentment at the years that went by while the doctors told me he was fine. I remember he was about three when I first became concerned with how much thinner he was than other children. He will be 8 in November, and has only just recently gotten attention from a doctor. And I have to WAIT now until October 5th to see the gastro. I feel like they said, "We just did a test and discovered your child is starving. Do you think you can let him starve another few weeks until we can get him in to see a gastro?" Just venting.

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o.k lost my post. trying again... Not offering medical advice. even though my son's blood test were only a little elevated I told my Dr. I was going to try this gluten-free diet and see how he does. He is so much better not just physically but emotionally/behavior too. Doing a lot of reading so I can talk to the Dr. and ask good questions. www.clanthompson.com has good food lists. There are also some really good vitamins (Gluten-free) at healthfood stores. I am working on patience as I want him to be all better now.

I can as a healthcare professional recommend the Metagenics ULTRA CARE FOR KIDS. Its a medical food shake with lots of nutrients. WWW.metagenics.com you can locate a practioner there.

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JSIB...remember, Celiac is not an allergy, so your child could very well not have any allergies (including wheat) and still have Celiac.

I would suggest to your Pedi. GI that they go to the NASPGHAN.org and look up Celiac Disease. This is the website for Pedi. GI's and they will find all they need to know.

The good news, for both of you, is that children tend to respond extremely quickly to the gluten-free diet. They may not instantly gain weight, or grow, but you will see an amazing change in their personalities...whether you think there's something different in their personality or not trust me, you'll see a difference. I had no idea my son wasn't acting like himself until he went gluten-free....THEN I discovered what having a 2 year old REALLY means!

Best of luck!!

Bridget

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Thanks for your reply. My son has had all the allergy tests and He is very allergic to quite a few things on the delayed rast tests. wheat was the lowest. My pedi. is clueless but we have a great allergist we found this summer.

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To the OP-- I totally know how you feel.. My 2 1/2 yr old was having horrible bowel movements and not gaining weight well (she is still small at 23 lbs) and in April, the GI dr appt was scheduled for July!! I was thinking the same thing.. shouldn't this be an emergency? Argh!

Your story rang a bell with me, because my husband AND his brother, as children, were sent to an endocrinologist because of their small size (my husband was measuring 2 years behind what he should have).. back then they didn't test for Celiac. I am still in the figuring-out stage with my family. My 7 year old son does not have GI symptoms but is very small for his age. Then my 2 1/2 yr old had obvious GI symptoms with an elevated IgG and IgA.

Mel

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Hi Sharon

I'm sorry for all you have been through.....I can relate. My family always critisized my daughter for being thin and asked do you feed her..YUCK. My peditrician did more blood tests. I am so thankful that he took the time and had the insight. My daughter is 12 and has made great strides in 5 months. Don't look back ..look forward. Kids are unbelievable. My daughter is cool calm and collected. She is doing awesome and has a clue. Your son will too. Kids are amazing wait and see. Good luck!!!! :D

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Thanks to everyone who's replied so far. It's important that some things remain the same for my son.

My son was dx almost a year ago, and only after several months of illness followed by 3 months in the hospital. It can be so scary at first, and I can't believe that we've arrived at a place where we do gluten-free as naturally as can be. You will get there too.

The "some things remain the same" can be a big issue for kids. Two things we did that helped us --- I had P make a list of 4 things he didn't want to see us eat yet -- (he was on a Gluten-free Casein-free, soy free, egg free, diet for about 6 weeks). It gave him some control, and showed our empathy for his grieving.

Next he made a list of his favorite foods that were not gluten-free. Over the months that followed, as he was allowed to expand his diet, we worked on finding acceptable gluten-free substitutes for them. It was a great learning experience, we had fun with the liberty of "cook and throw it out" for dud recipes, and we could see there were, in fact, lots of choices out there.

If your son would like, he can email us and talk to my son. Good luck, and when you are done with the grief stage, try to think of it as an adventure~

Joanna

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Wow, Joanna, thank you. That's what I'm going through right now- the grief stage. I am imaging my son and how his life will be from now on, and missing the simplicity of the old life and how he was able to partake in the foods that other children do on trips and for parties. I've been feeling down and out, finding myself teary-eyed as I drive, just "in a slump". How the holiday parties at school are goint to be painful for him instead of fun. I will try to make things that he will be able to have. He already puts up with a peanut allergy.

October 5th he goes for his appointment with the gastro. I've been depressed. Thanks for your message. I'm sure he may want to email your son. Thanks.

Sharon

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I went with my son on his preschool fieldtrip to go apple picking. Lots of fun. The afterwards they helped make a scarecrow. I asked what they were using.Got a funny look. and was told "just grass" then afer my son was covered his teacher said it might be wild rye or others. It was o.k. The teachers did not know about the scarecrow making until we got there-We left early as they brought out apple donuts... My son had fun and the donuts missed were only a small part of the expierience. My son's teachers have been very supportive and before my son got to school a few days after his dx had made the class room gluten-free,. Ordered gluten -free playdoh and put a sign on the door that all must wash their hands when entering the classroom.

Sometimes I forget to breathe and forget it is more stress on my son because even with a smile on my face he picks up my worry.

But you know WITHOUT all that processed food our kids will end up healthier kids and as adults.

For yummy cookies gluten-free,sf,nutf,df try www.enjoylifefoods.com The chocolate cookies are really good. As a project we are going to expieriment with making cookies and cakes we have three months before his birthday to come up with something good.

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That's the only thing I feel good about, that they will be healthier without that stuff. It's hard for him because he's already 8, already has his "favorite" foods, and I feel if this had happened in preschool it would have been easier to transition him. Even things like ordering a pizza will be something he can't share when company is over and someone says, "Hey, lets order a pizza."

He has been able to eat these foods for years, and now he suddenly can't. He is so much more "aware" than if he were 2 or 3. As your child gets older, this intolerence will become more of an issue, especially in a mainstream classroom where children are bringing in stuff for holiday parties and birthdays. My son's school gave me a hard enough time with the peanut allergy, and there's no way they are going to make the lunchroom gluten free, or the holiday parties gluten free, on account of my child. I found with the peanut allergy, it was so much easier to deal with in the younger years, and you lose control the older and older they get. I go to all the holiday parties so I can read ingredients and place things on my son's plate that he otherwise couldn't have because the school won't be responsible for giving him ANYTHING. They expect him to sit there with nothing on his plate while the rest of the kids without issues eat in front of him. They don't want to be sued if a teacher puts something on his plate and he's allergic. So I go to every party. That was easy with peanut- not so with gluten.

It was easy to transition my son with the peanut, because he was 2 when we found out. He was just raised avoiding peanut. But he's 8 now, and this will be much harder on him. I can try to be positive about it, which I've been, but this news was bad news for him, not good news. How would you feel if your house burned down and people had no empathy? Just happy smiles and saying, "Gee, now you can get all new stuff." Wouldn't you want your old stuff? Wouldn't you be annoyed that people were acting like nothing bad has happened to you and offering no compassion? I think Rye-baby hit the nail on the head when she mentioned the grief stage. There definitely is one, especially when dealing with an older child. I cried just reading her post- finally someone put words to what I was going through. I didn't even realize it was a grief stage until someone pointed it out.

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