Searching In Desperation?

[momto2monkeys]

I am a new member here and am just lost at this point. I will try to nutshell.... We have a 4.5 yr old daughter who has been listed as malnutritioned and failure to thrive since birth. From birth to 12 months she did have a pretty moderate case of GERD which was treated with meds. It literally stopped at about 12-13 mo old. At that point weight gain started to take a turn for the worse. She crept up the growth chart for about a year and when she was 2, she literally stopped at 24 lbs and that is where we are today. She is seen by genetics and alot of testing has been done on her to rule out various disorders and so on. Their best guess at this point and her GI also says, she just doesn't seem to absorb nutrients from her foods. Eating is hit or miss with her...she rarely has an appetite and complains of chronic stomach aches which started about a month ago. Her GI diagnosed Megace which I refuse to put her on since the manufacturer says it has not been proven safe or effective in children. We saw him again today and he will only agree to Megace. About 2 months ago in talking with a friend, she told me about Celiac disease. While I had heard the term, I was really unaware of what it all was about. I actually read the book which was borrowed from a friend. Now all through these 4 years I have remained rational and level headed in talking with her docs, however, I would really like this ruled out or confirmed...whatever the case may be. I know some will argue mother's intuition, but I think Celiac could be a real probable culprit. Her GI says she does not display the traditional symptom of diarrhea. I read in the book that there is asymptomatic Celiac as well...so why is he so close minded to this possibility? IT is so frustration and in reading Danna's book I realize many others have had to endure the years sometimes of waiting before a doctor tested and realized what the issue was.

. If there are any moms/dads here in the Houston area, I would love to know what your thoughts are especially. We currently see the GI ept. at Texas Children's.

Any help /advice is appreciated!

[lizard00]

Welcome to the board!!

I can only speak as a mother of a 3 yr old... he doesn't display any symptoms but this is what I would do if he did.

First, get a second opinion. If he only open to putting her on a Rx, then you need to go elsewhere. My ped is pretty young, but he told me first off that in med school now, they are learning that most of the time, the mother is right. YOU know your child, not a doc who sees her for a few minutes only when things are wrong. So, explore other options if you want to have her tested.

Now, bear also in mind that tests can be inconclusive in children, so be prepared for that. But, trust your gut, it's usually right. At that point, I would just go gluten-free. I don't have a diagnosis, although I actually am closer now than before, but I had to get myself well to even continue trying.

There actually are good doctors out there, but sometimes they take a little longer to find. And then, when she starts thriving, you can take her and say this is what I did, look at the results. Doctors can argue many things, but they cannot argue results.

Hope you get some answers soon!!

[bakingbarb]

I am a new member here and am just lost at this point. I will try to nutshell.... We have a 4.5 yr old daughter who has been listed as malnutritioned and failure to thrive since birth. From birth to 12 months she did have a pretty moderate case of GERD which was treated with meds. It literally stopped at about 12-13 mo old. At that point weight gain started to take a turn for the worse. She crept up the growth chart for about a year and when she was 2, she literally stopped at 24 lbs and that is where we are today. She is seen by genetics and alot of testing has been done on her to rule out various disorders and so on. Their best guess at this point and her GI also says, she just doesn't seem to absorb nutrients from her foods. Eating is hit or miss with her...she rarely has an appetite and complains of chronic stomach aches which started about a month ago. Her GI diagnosed Megace which I refuse to put her on since the manufacturer says it has not been proven safe or effective in children. We saw him again today and he will only agree to Megace. About 2 months ago in talking with a friend, she told me about Celiac disease. While I had heard the term, I was really unaware of what it all was about. I actually read the book which was borrowed from a friend. Now all through these 4 years I have remained rational and level headed in talking with her docs, however, I would really like this ruled out or confirmed...whatever the case may be. I know some will argue mother's intuition, but I think Celiac could be a real probable culprit. Her GI says she does not display the traditional symptom of diarrhea. I read in the book that there is asymptomatic Celiac as well...so why is he so close minded to this possibility? IT is so frustration and in reading Danna's book I realize many others have had to endure the years sometimes of waiting before a doctor tested and realized what the issue was.

. If there are any moms/dads here in the Houston area, I would love to know what your thoughts are especially. We currently see the GI ept. at Texas Children's.

Any help /advice is appreciated!

TRUST YOUR INSTINCTS

Don't mean to yell but I will tell you what happened to me and my son as a new born.

He threw up all the time. By the time he was 2 months old he was skin and bones. I had been to Dr after Dr. We had been to the ER at least 4 times, everytime we were told he was fine. I was told it was me, it was my milk, I was doing something wrong.

I was 18 when he was born, so lets face it I didn't have experince on my side.

Here is the worst and lowest event:

I had one Er nurse tell me she was not going to waste any Dr's time with me and my imagination and if I knew anything I would feed him fruit and cereal for the constipation. He was 2 months old. 2 month old babies dont eat food of any kind, 2 month old babies are not constipated to the point of it being a rock and 2 month old babie are not skin and bones 2 month old babies should not have projectile vomiting

BUT I knew there was something wrong and no Dr was going to tell me NO he is fine and make me belive it. I finaly found a Dr that listend and within 15 min had me take him to the hospital and admitted him for surgery. He had pyloric stenosis and was starving to death.

Please listen to your heart. You know something is wrong, you know the Drs are wrong. Don't put your baby on a medication that is not safe. Dr's are not Gods.

Open Original Shared Link can test your baby and give you the answers.

[happygirl]

When you pursue a second opinion, ask about testing for Celiac Disease, as well as Eosinophilic Disorders (www.apfed.org).

Best of luck!

[gfpaperdoll]

I sent you a PM. I am in Houston...

[ravenwoodglass]

Trying her on a gluten free diet is not going to do any harm and may lead to the resolution of her problems. Get her ped to do a celiac panel if it hasn't already been done, just in case she does show positive on one. There are a lot of false negatives so even if the blood tests are negative do the diet for a few months anyway. You don't need anyones permission to make her gluten free and it won't hurt her if it turns out to not be an issue.

[minnie82]

I actually haven't recieved a diagnosis yet and i'm not sure if i want to put myself through it to get one, as it would require i eat gluten heavily for at least 6 weeks according to my doctor. So I am posting this in hopes of getting some advice and guidence. My aunt (paternal) who was diagnosed a celiac after 20+ years of symptoms and dozens of doctors. She said you have to be eating A LOT of gluten in order to be diagnosed, she had several negative blood tests and it wasnt until she had lost 35 pounds and had a biopsy that it came up. Of course this was when her intestinal villi were already completely flat and she was already in her mid thirties. Her sister was diagnosed soon after.

I am 25/female/first generation Polish. Since I have been 8, I've had eczema all over my legs, under arms, my forhead and eyelids and shoulders, it has been controlled well with Protopic ointments. Since 11 I have had severe acne on my back, a little on my face, also around this time I have had diarheah or constipation at a least a couple times a week sometimes more. Intermittent periods of anemia since i was 10. Being on oral contraceptives at the age of 16 suppressed my acne until i was 21 when i had acne regardless of being on the pill, I discontinued the pill at 23 and dont want to take it again. I have always had a lot of dental problems despite pretty excellent oral hygene- my first root canal was last year, i have over 15 filllings. Since i've been 21-22 I have been suffering hairloss (it probably began sooner but it wasnt until then it had thinned enough to cause alarm), my hair has also went from thick and straight to very very wavy and thin and brittle, almost every hair has split ends no matter how well i keep up with trimmings. I have always had really dark circles under my eyes regardless of the amount of sleep, yoga, supplements and expensive creams i've used- yes i was that ten year old with dark circles under my eyes. I'm 4 inches shorter then my shortest reletive. I am known in my circle of friends to have the most foul room-clearing putrid farts on the planet- they have been affectionatly nick named "Polish Farts". In college after 2 beers (sometimes not even one) I was known to fall asleep immediatly. There's dozens of photos of me sleeping in weird places after drinking beer. i thought that would be an interesting point. The last 4 years I have been tired and Fatigued, needing 10+ hours of sleep. In fact my senior year of college i almost failed a couple classes because i could not get out of bed to make it to my 1 pm class. I have trouble keeping my weight in check. i'm 5'1'' small build and look great at 110lbs. If i eat a peice of pizza i will gain 5 pounds. I have had a insane affinity for all things breaded. My beloved snack is rye toast with butter. I've gone through phases where i allowed my self to consume entire loaves of bread only to be put into a hazy sleepy stupor and be incapacitated for the rest of the day. I am known to be irritable until i eat something. I am lactose intolerant. I can't concentrate and often forget why i came into a room. I will forget what i'm looking for while i'm looking for it.

I have been to soooo many doctors. I have tested for thyroid, Lupus, Cushings Disease, PCOS (even though i have never EVER had an irregullar period since i got mine) with everything being normal. I have been told that i should seek therapy, that i am the first women in my family to have female pattern baldness, that "some people just have acne and eczema", "we don't know how to help you". My endocrinologist insists that theres no way i have celiac because is not related to acne or hairloss. My aunt at my age, 10 years before her diagnosis experienced acne and hairloss. 2 summers ago, In the heat of my frustration with dermatologists, i saw a homeopath who put me on a "candida detox" that was gluten, sugar, dairy, caffeine free. So basically i was eating vegtables and meat with homemade sauces and obsene amounts of cashews (they helped with the sugar cravings) and over 300$ worth of supplements. IN one month i lost 20 pounds which put me back at my highschool weight of 107 pounds (remember i'm 5'1''), i felt great, slept 6 hours a day. It was incredibley difficult and though homeopaths mean well i think spending my meager paychecks on supplements and magic tinctures and powders was bogus. so i started eating gluten again and started to feel like crap and gained weight fast, though my diet over all was still "wellbbalanced" full of fresh veggies, greens, fruit, and Whole grains.

a couple months ago, My acne on my face was in full force. It was so bad the dominican cleaning lady (god bless her soul) at my office stopped me and said "honey you are young, your face should'nt look that way". I explained i was seeing many doctors and i know it looks bad, and that i'm trying to do something about it. Many other people approached me and offered their advice and recommended i see a dermatologist (as if i havent already tried more then a dozen creams and sulfer washes. I met up with a friend for dinner and we were talking about my frustration with all my doctors. She said her brother had celiac disease , i told her how much success i had with my candida cleanse diet though it was extremely difficult. I told her i stopped because i was looking for a diagnosis and in order to get one it has been advised to continue eating as you nroally would. She asked me why a diagnosis is so importent to me if i know what works already. That day i went gluten free. over a month later my acne is slowly clearing up. My face looks 50% better, my eczema has cleared, my back is having a chance to heal. My boyfriend and firends have said my mood is lighter. After waiting forever to get an appointment to see an allergist i saw one on friday. He said if eliminating is helping then i should continue and be as strict as possible, but only eliminate one thing at a time. he thinks its either wheat or dairy and that i should see a gastrologist. He also told me my other doctors are ass%$@#s and there is clearly something wrong. However i must eat gluten to get a biopsy. My face is almost clear,only time will tell with my hair, I have lost 5 pounds and my belly no longer looks swollen and bloated. My dark circles are much improved and my mood is better. So I have not decided whether i should get a proper diagnosis. I think that america (me included) is way too preoccupied with "diagnosis" when they are suffering needlessly. I am learning how to do the diet better every day and i feel better. so maybe after a few months of when i'm sure I've been strict i will decided depending on my symptoms. However If i feel drastic improvement and so far i have then why would i go and have a biopsy?

[gfpaperdoll]

Hi Minnie82 & welcome - you HAVE a diagnosis it came from the truest test of them all - dietary response.

If you go back to eating gluten I will tell you that some people get very ill & cannot do it - & you face the possibility of picking up another auto immune illness at that time. Since you have figured out your problem why go back to the medical community, who have obviously not helped you? & you could die from this and they would never figure it out. !! sad but true. A lot of us hurt for all the people that are suffering needlessly...

IMO you should be completely gluten free, dairy free & soy free, period.

please just change your diet/lifestyle get healthy & get on with a normal life - what you have been experiencing is not normal...

if you really want some idea of what you are dealing with - spend the money & get tested thru Enterolab.com You do not need any doctors orders & you can find out which genes you have, your reaction to gluten, dairy, & a couple other foods & how bad your malabsorption is. You do not have to be eating gluten to test with them - they can test you up to a year after you are gluten-free.

Having an aunt with celiac is like a red flag - I am surprised that she did not clue you in sooner...

& well yes it is unfortunate that some health care people are selling supplements. You will find on here that most of us take B12 & maybe a couple other things - if we test low for it. If you have medical insurance just get the blood tests run to check all your vitamin & mineral levels & get a hard copy of the results. Even if your B12 is in the normal range - take B12, the range is too low. & a lot of people take vitamin D, because we have found out that a lot of us are low in D - me also...

[momto2monkeys]

I want to thank all of you for your responses. Wwe heard from our daughter's geneticist the other day and she said based on the blood labs that came back, our daughter does in fact have Celiac. She said her ttg's (?) were high and she was positive for anti endomysial antibodies. I have no clue yet what all that means, but she had another ped GI look over the results ( not the one we are seeing at Texas Children's) but one who specializes in Celiac and he agreed with the diagnosis. I have talked to one member on here who has already given me tremendous help in our first steps of dietary changes.

My husband and I have decided to put the whole household on gluten free since we more than likely have it too. It would explain away alot of my own personal issues with food responses and things like my anemia ( which was written off to being a female and my cycle) and my frequent outbreaks of apthous ulcers which I can set my calendar too. My husband is also an identical twin whose brother has Crohn's disease. However, my husband does not have Crohn's. Anyway - I have begun shopping ( in a whole new and unexperienced way)! LOL and getting staple items. I think and am hoping we will learn quickly. Most of the time we grill meats, usually with no sauces and have fresh veggies and so on. Our biggest change will be bread which we love, but I found a great bread at Whole Foods yesterday. I did purchase a bread maker as well and will hopefully get feedback on a good gluten free mix which I can make my own from.

Soooo, with all this said, I guess this forum has gained a new member and am hoping to connect with many others for advice, suggestions and just general support in all of this. One other question I have is I have read posts here about the B-12 supplements some here take. I have not met yet with anyone who can help me on this, but will ask her new pediatrician about - but are B-12 supplements ok for children? She is 4 1/2 and our son is almost 7....I just want to make sure this will be safe for them?

Thanks in advance!!!