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sarahjo

Need Help With Toddler And Possible Celiac Disease

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I have a 2.5 year old that is failure to thrive and is on a feeding tube at night. she is allergic to milk, and we have been in and out of doctors and no answer, someone mentioned celiac to me and it fits, I finally removed all gluten from her diet even colors and playdough. she improved and even gained weight. she wasn't sick all the time, then we met with her new gastro. he said she didn't have it and to start a regular diet. we did 6 months ago she has only been healthy for 2 days. she has been hosp. 2 times. has caught ever cold and illness around, and has only gained 2 pounds. (She gained 5 on the other diet) she does carry the gene that could develop into celiac. she is miserable. I decided tonight she was going gluten free. I am lost and cry alot. please help with info. thanks

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First of all, find a new doctor!!! Anyone that ignores improvement when gluten is eliminated from the diet does not seem very bright...... However if you want an official diagnosis she needs to be eating gluten when testing is done.

The alternative is to put her on the diet and if you see improvement as before, I say you have your answer. Sometimes you need to trust your instincts more that the doctors!!!!!

I hope she starts to feel better. Good luck.

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Testing in children, especially under 24 months is not very reliable.

If there is an improvement on the diet and a positive gene, that is enough for most doctors to say a gluten free diet is the right direction. Find a doctor that is caring enough to take into account your child's well being while trying to determine what your child's health issues are.

L.

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her doctor said at the first meeting 3 times "SHE DOES NOT HAVE CELIAC< YOU CAN"T SAY SHE DOES!!" he said since there was nothing on paper she doesn't have it. when we found out she was allergic to milk, he said we could still feed her cheese and ice cream, just avoid milk. well first of all she is still on formula through a feeding tube, milk hasn't even entered her world yet. I know i need to swith doctors. i have tried both ped. gastor.in our area. We see him tomorrow, and I am bringing my aunt( she's been a nurse for 25 years) and telling him he can do the biopsy on friday or never. we will start treating her for celiac next weekend. I am just scared that something will happen and since we don't have it in her file, she won't be treated as a celiac patient.

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Guest nini

that Dr. sounds like a real winner (NOT!) I am so sorry that you are having to go through this.

My daughter was 3 when I was dx'ed with Celiac and then realized that her symptoms fit... she was also failure to thrive, plus being treated for GERD and she was also anemic and hypoclycemic... very very tiny for her age and refused to eat... The pediatric GI refused to even consider a Celiac dx for her and said she just had IBS!!! (WHAT???!) anyway, I went back to her pediatrician and got her to agree with me that we would try the diet and see if it worked... between her extremely positive dietary response and genetic predisposition, she was dx'ed with Gluten Intolerance. Her pediatrician told me "we KNOW it's Celiac, but we can't prove it, so we'll just put Gluten Intolerance in her chart..." the treatment is the same anyway...

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Let me tell ypu my story, very much like you daughters, this might be long!

At 15 months, stopped walking, talking, eating, playing everything. Kept going to the doctor but they couldn't find anything. By 17 months they had admitted me to the hospital, and still couldn't find anything. They thought I had cancer, so had many spinal taps and other tests for that. All came back negative. Went home from the hospital, and didn't get any better, but they thought that because I didn't have cancer, that all was okay. I was admitted again the next month. Failure ot thrive, got down to i think 15 pounds when almost 2 is not good.

More and more testing, nothing positive. Well she is not walking, she must have some sort of muscle disesase. NO, but they only found that out after the invasive muscle biopsy, which showed nothing wrong! of course it did, i didn't have a muscle disease. They sent me home after that procedure, and I threw up constatly the entire weekend from the surgery, and they still didn't know what was wrong. All my hair fell out, they just ddin't have a clue what was happening. My GI (at the time) didn't think I could have celiac, bcause I didn't have diaharea, i was constipated. That was his only basis for not testing celiac.

Admitted a 3rd (and final) time. Ended up putting a broviac catheter into my chest, and IV through your chest right into you heart for continuous blood tests and fluids. Had a feeding tube in constantly, were feeding me pancakes in the hospital, they thought it would settle my stomach WRONG again.

Finally they did a blood test for celiac, and the numbers were through the roof, so high they couldn't believe it. Yet they still wanted to do the biopsy to confirm, so they told my mom not to change my diet at all in case it made the biopsy neg. So we had a biopsy, and I had no villi left in my intestine, all completely gone. They started the gluten-free dietm and within a week, I was happy and eating and playing. I stayed in the hospital for another hcouple weeks to make sure that it wasn't just a fluke and I really was better.

The nurses told my mom after I was better, that they had guessed I had another 3-6 weeks to live.

Then a year later he wanted to do a challeng biopsy, with a gluten challenge, to make sure that was what it was, my mom refused, of course, and he got really mad at her, and said that the diagnosis could not be confirmed, and i did not have celaic, because they could not make sure. So my mom just got up and left, and we have never seen him again. we now have a really good GI doc, and he is really nice, and does all that is possible to make me feel as good as I can.

Yet if i had been diagnosed when the first symptoms popped up, i would be majorly better. The muscle biopsy lead me to tearing my quad 4 weeks ago, and might have to have surgery to fix it next week.

I have had slowed growth, and have the bone age of a 12 year old, I am 15 and almost 16. I did grow, and now I am 5'8" but I could have grown when all my friends did in middle school, instead of sophomore year of high school.

It also led to major other autoimmune problems, that probably could have been prevented.

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The moral of this long story is to go gluten-free, it could lead you daughter to getting sicker later in life if you let it wait. Some GI docs can be rather jerks, and can leave your child's life on the line. Go gluten-free if you can't get the proper diagnosis from your doc, who sounds rather mean, and just see the dference in her life, and you don't need an official diagnosis. You could also ask your regular Ped to do the blood, and if that is positive, then they might want to do the biopsy.

Hope she feels better soon, sorry for the lengthy post!

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Molly--That is truly an amazing story! We tend to think in terms of adults who have been sick for years as the ones having the most damage and additional health problems. Your experience proves that even for the very young, early diagnosis and the gluten-free diet are so very important. So glad your mom stuck to her guns years ago! I know that your story is going to help a lot of people :)

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you guys help so much, my daughters symptoms are

failure to thrive (Weighs 23 pounds, will be 3 in 2 months)

feeding tube (Unexplained)

irritaiable

reflux (She had the surgery to stop it, has returned since she ate gluten)

muscle pains

nonstop illnesses (mostly viral)

daily fever 99.0

hospitolized for unexplained reasons (High fever, listless)

hurts to poops (alternates between const. and diarr.)

dehyrates extremely easy (with in hours)

when she is Gluten-free Casein-free she doesn't have these symptoms

it helps to hear your stories, I know deep down she has celiac it is just hard to get the doctors to see it.

she does carry the gene to develop celiac also

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Doctors really anger me!!! I was the typical celiac taking at least 12 years to diagnose. Besides that whole scenario, I broke my foot last August and the doctor told me by the xrays it wasn't broken. I told my husband it had to be (had same foot broken before). Dr. finally sent me to foot specialist and voila, I was right. Took about 15 weeks to heal b/c of the delay in diagnosis and it still bothers me. :blink:

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You can get a gene test to find out if you have the gene. (blood)

Oh, I know, it's just that with all the testing mentioned a gene test was absent, so I wasn't sure how the Sarahjo knew that for sure.

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You mentioned that she is receiving formula and is allergic to milk. Is the formula milk based or soy based? Both are potential allergens.

I would also suspect celiac especially since she has the gene for it ... I was diagnosed by enterolab (2 gluten intolerant genes, no celiac genes). My conventional tests came out negative (blood and endoscopy) but I had realized I had a problem with wheat three years before my tests, so they were probably inaccurate. If I waited to have the damage that a conventional diagnosis requires, I would have been much sicker as I was on a fast downward spiral with all the classic celiac symptoms (I lost 15 pounds in 3 months). Even my internist is going to start using Enterolab because he has seen such a dramatic change in my health going gluten-free. I wouldn't wait till she's sicker. I went through over 40 years of belly aches, mystery illnesses, etc. It's not worth waiting for her symptoms to finally fulfill the requirements for diagnosis. There's just so much they don't know yet. I've noticed many people on the site could have benefitted from being diagnosed at an earlier stage, before they developed other problems.

If the gluten-free diet works, that is the best confirmation.

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they did do a gene test by blood on her, they have been waiting for to be healthy enough to do the biopsy. I have told them that unless she is off of wheat/gluten this isn't going to happen. so we battle the books vs. my child. I have had this gut feeling that she has celiac for over a year now. she is a whole differnt child on the diet, she is happy, healthy, and eats better.

about her formula-she gets neocate plus, it is a speacilized formula.

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Guest nini

just trust your instinct and put her on the gluten free diet and keep her on it if it helps. I would not do the biopsy, especially in a small child, most Dr.s are reluctant to dx celiac unless they see full blown villous atrophy. They aren't willing to consider early stages of the disease. Why wait until there is significant damage to dx? The gene test shows she has the predisposition to it and if she responds to the diet, that should be more than enough. That is my two cents.

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I went to the doctor today, he agreed to put katarah on the Gluten-free Casein-free diet. i think he doesn't think anything will happen. he didn't want to perform the biopsy. he had a pulmnologist come in and speak to us. now we are also treating her for asthma, iron defiency, and we have sleep anpnea test on friday, we are going to remove her tonsils, and adnoids. anybody have any of these problems also?

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Guest nini

are you going to hold off removing the tonsils and adenoids until you can see if the diet is making a difference? My daughter's pediatrician agreed to a three week trial before doing anything else.

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If she has sleep apena, I would suggest getting the surgeries out of the way before she really remembers it. I had sleep apnea, and had my tonsils out when i was 14, it was very painful and it gets more painful the older you are. , and then she wouldn't have to worry about the sleep apnea anymore.

I had sleep apnea, and had t&a surgery, then had reconstructive jaw surgery last summer which finally cured the apnea.

Hope she feels better.

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Sarajo,

I have been where you are and my advice is to FOLLOW YOUR GUT!!!!!!!!! Both my kids have had a lot of problems and my gut feeling is the only thing that has kept my daughter alive. My son is 3 and had 2 negative biopsies and inconclusive bloodwork. I found out later that testing is often inconclusive in kids under 5. I finally said to heck with it and started him on the diet. It worked miracles in him and now he's thriving. Both my kids started out having issues with dairy (blood in stool), so I went dairy free while nursing them and it cleared. They both can handle dairy now that they've been gluten-free for a while.

My daughter has a LOT of issues. She was born with a heart defect and open heart surgery at 9 days old. She kept getting sicker and sicker and no one could figure out why, they just blamed her heart. I begged them to test her for celiac and I was told that I just needed to accept the heart babies are sick. I was sooooo mad. She was projectile vomiting 20+ times per day, listless, not gaining any weight, anemic to the point of getting transfusions and on an NG then NJ tube. She was pitiful and at only 4 mos. old she had a fundoplication and a g-tube put in. I just knew she didn't need the fundo, but I every dr. recommended it and I didn't know what else to try. After a lot more happened, I finally went on a gluten-free diet to see if it would help her. The change was immediate and amazing. She was happy, the projectile vomiting stopped, the blood from her g-tube stopped and she started gaining weight. After a week I ate one bowl of oatmeal to test it and her symptoms returned immediately. It was amazing. I kept very detailed records of everything and ended up doing a chart with everything that happened, then plotted her weight against the date. It is very evident when doctors look at the chart that a gluten-free diet has been a literal lifesaver for her.

She turned 1 last week and I really don't think she would have lived if I had listened to her doctors. She still has a lot of health issues and will have a 2nd open heart surgery in August, but the difference is amazing. She still has lot of choking issues, but I think a lot of that is due to damage done when she was so sick. We now are mixing pureed avocado, prunes, and gerber chicken in with her feedings at night. She can only handle breastmilk and we have tried every formula imaginable. I'm sure you have too. For now I am pumping and will continue for a while, at least through her surgery. I breastfed my son til 20 mos because of all his issues and I think it helped him too.

I'm sorry if this has been all over the place, but I am exhausted after a long day and having a hard time making complete thoughts. Please let me know if you need to talk at all. I really do understand where you are right now. Our Ped. GI now agrees that it's celiac, but it's been a long road.

I had gene testing on both kids. My son has both genes and my daughter has one.

Also - be sure to eliminate all health a beauty supplies that have gluten. We had some Curel lotion that made Megan very ill and it took a while to figure that out.

Good luck and let me know if you need anything.

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from what the doctor says her t&A are physically to large. she is very small, and it wouldn't suprise me. we go to see and ent next week.

are all these problems normal with celiac? i had brought my aunt with to support me, and since she was there, the doctor looked at me and said no problem start her on that diet. i believe he is waiting for no change, I know that there will be. I am hoping that the asthma will clear up on the diet, and hopefully her iron deficiency will to. she obvisouly is malnourished.

TCA (?) I feel so sorry for you, I have been through alot,the feeding tube is still in my daughter and we use it every night. but to have heart problems to. i will pray for you.

you guys are so supportive, my husband doesn't ever want to talk about it, so I feel alone.thank you so much

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from what the doctor says her t&A are physically to large. she is very small, and it wouldn't suprise me. we go to see and ent next week.

are all these problems normal with celiac? i had brought my aunt with to support me, and since she was there, the doctor looked at me and said no problem start her on that diet. i believe he is waiting for no change, I know that there will be. I am hoping that the asthma will clear up on the diet, and hopefully her iron deficiency will to. she obvisouly is malnourished.

TCA (?) I feel so sorry for you, I have been through alot,the feeding tube is still in my daughter and we use it every night. but to have heart problems to. i will pray for you.

you guys are so supportive, my husband doesn't ever want to talk about it, so I feel alone.thank you so much

Thanks so much for the prayers. That is all that has gotten us through. I will pray for your family too. I hope your husband comes around. When my husband saw the improvement in the kids he was amazed and got on board in a hurry.

I also wanted to let you know that my son, who had been on a nebulizer and inhalers has not shown one symptom of asthma since going gluten-free. It's really amazing.

I have a list of gluten-free foods I feed him if you would like it. I keep one made up in case Meg goes into the hospital other family members will know how to prepare his food. Just PM me for it.

Good luck and please let us know how your daughter is doing.

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Sarahjo, I am continually amazed at the stupidity of some doctors. Stupid is not a word I use lightly. I'm 50 and I have seen and heard some things that just make my head spin!! Actually worse, they infuriate me!!

You have gotten some really good advice on this board. I agree with the advice to trust your gut feeling. You see the difference when your child is gluten free. You really don't need a doctor to tell you what you, in your heart, already know. One thing you have to remember about doctors, sad as it is, they need us to be sick to stay in business. Some people say that is hogwash but it's not. Without sick people, no doctors would be needed. Without sick people, we wouldn't need medicine, thus no pharmacies or pharmaceutical companies. Think of how many people would be out of work.

For a doctor to blatantly ignore the signs of celiac - wow!! If that doesn't say "I'm not going to help your child get well so that you have to keep coming back and support me", I don't know what does.

I'm going thru the same thing w/ my granddaughter. I'd bet a paycheck she has celiac, yet because the DR says she doesn't, my daughter won't have her tested. It's maddening. She has a skin rash that was first diagnosed as eczema, then psoriasis. Typical for persons w/ dermatitis herpetiformis. She is very little for her age, has discolored teeth, mood swings, constipation/diahrrea just to name a few off the top of my head.

For people to discount or ignore the fact that there are true food allergies is ludicrous. Five mths after I got married, I felt like I was dying. Literally. Scared the pee outta me. I felt worse every day. Then I realized I'd been eating white potatoes and corn every night for 5 mths, something I didnt do before I got married. I'd been to several doctors, with no results. I stopped the potatoes and corn and within a week, I was fine.

I urge you not to let them do a biopsy on your child. You have "proof in the pudding" enough w/o putting her thru that. All that is going to confirm is that she is, possibly, full blown celiac and have little or no villi left. The only thing the dr's are going to do after that is tell you to avoid gluten. I don't know if you've been told about this, but I know plenty of celiacs who have not been. Celiacs need to avoid modified food starch and textured vegetable protein.

As for the tonsils and adinoids coming out, please wait, give the gluten-free diet a chance. Gluten in many people causes inflammation.

Dairy is a big factor in asthma. While I don't have asthma, I did have constant bronchitis, sinus infections, sinus drainage, sinus headaches. Within a week of eliminating dairy from my diet, all symptoms were gone. Never to return unless I ingest dairy.

Sleep apnea is also related to thyroid issues, as well as dairy. This dr who told which ever person posted this on this board (sorry) that you can give your child cheese and other dairy products, just no milk, is a quack. Dairy is dairy and today, unless you are buying organic, it also has tons of hormones and antibiotics in it. Cows are fed those every day of their lives. It passes to their milk, thus cheese, etc.

Sarahjo, do you know what blood type your daughter is?

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Plain and simple your doctor is an idiot! If she improved that much on a gluten free diet stick to it. She doesn't need gluten to be healthy. I would get a stool sample analyzed by enterolabs and skip the stupid doctors.

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Just to let you know - her asthma may or may not go away or improve on the diet, though you may see plenty of other positive results. I too, would encourage holding off on surgery a few weeks to get an idea of the diet will make any difference on the symptoms that would be treated by surgery, but my asthma was not really impacted one way or another by the diet. (Of course, I'm also 28, and don't have severe asthma... ;-) small difference.) I'm glad that you're going full force giving the diet a go, though. :-) Good luck. Let us know how you guys are doing.

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