Dr.'s Neglected My Son

[krisb]

I just switched my 8 year old to a new Ped. I went and picked up his medical records from his old Dr. It's more like a book. He has had so many abnormal blood results that were just ignored. These records only go back to when he was about 3. I would like to see the records from his first few years, I'm sure they are disturbing also.

Not only has he seen an endocrinologist, neurologist, allergists, dermatologist to rule out seizures and diabetes and skin problems. He had so many illnesses. Lot's of infections, pneumonia, viruses etc. He also had years of abnormal blood work that showed anemia, low thyroid and blood and protiens in his urine. His growth chart shows how obviously he fell right off the chart after starting solids. He was so sick all the time after starting solids and was even losing weight at 9 months old. In his charts it shows he complained of fatigue, paleness, and leg pain for years. He had a low blood pressure too. Plus he has many food allergies and severe environmental allergies and asthma. He also complained of chest pains.

I had to insist on the celiac test. His allergist said it was impossible but his Ped ran the test. Of course it came back positive. he went for his scope and colonoscopy and they came back with so much damage. Ulcers, lympgh nodes, gastritis, esophigitis, reflux, lactose intolerant on top of all his other symptoms with anemia.

So I read the letter the Gastro sent to the allergist and Ped. It says she was going to rule out celiac and his Iga was normal but Igg was high. When I talked to them about the results they said nothing about celiac as if they didn't know what I was talking about. The Dr. did tell me to start the diet after he had his scope but that's not what is said to the notes to the other Dr.'s. That doesn't help me any since my allergist thinks I'm nuts.

His new Ped is very understanding and helpful. She has been reading up on the subject so that's good. I'm just so frustrated. Why can't anyone just say this boy can't have gluten? What is the big deal? Look at his history! It's all so consistent with celiac and this boy has been suffering since he was a baby. I hate this. His gastro won't see him now until the end of the month. I don't know what she wants to do with him or her thought on him having celiac. She didn't even prescribe anything to heal his insides or advise me in any way. What do I do if she puts in his records that she didn't find celiac damage? I'm not putting him back on gluten. He already feels better. He is even playing with the kids more and has more energy. He looks pinker and gained a couple of pounds.

[Jnkmnky]

Why can't anyone just say this boy can't have gluten? What is the big deal? Look at his history! It's all so consistent with celiac and this boy has been suffering since he was a baby. I hate this. His gastro won't see him now until the end of the month. I don't know what she wants to do with him or her thought on him having celiac. She didn't even prescribe anything to heal his insides or advise me in any way. What do I do if she puts in his records that she didn't find celiac damage? I'm not putting him back on gluten. He already feels better. He is even playing with the kids more and has more energy. He looks pinker and gained a couple of pounds.

Why are you wanting them to say he can't have gluten? People in this world are on all sorts of diets. You don't need an official dx of celiac disease for your child. When he goes to school, you tell the nurse that he had a positive dietary response to the gluten challenge. He has Celiac Disease. Tell the dr he had a positive dietary response to the gluten challenge, you want his records to reflect the high probability of Celiac disease OR just record he HAS celiac disease. There's nothing they can give you to speed healing of the intestines. Lucky you!!! You can heal them all on your own with a diet 100% free and clear of any and all gluten. You're IN CHARGE! No more doctors!!! This is a good thing. Buy him some gluten free t-shirts, start a R.O.C.K chapter in your area *a once a month commitment isn't too difficult* and embrace the dx and no one will dare question the validity.

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There's no benefit to you to have an "official dx" of celiac disease. I've moved a bit recently, gone waltzing into new hospitals with sick kids, no records available, new schools, etc... Just said the kid has celiac disease and people accept my word. Who's going to lie about their child having Celiac disease?! What do we get for that??? A higher food bill!? Just don't ask the school to provide a gluten free lunch...then they might want proof.. Just pack a lunch. My school has never asked for a drs note. The district nurse just called me this week to gather info on the disease, not for me to prove it. I told her that the school needs to do NOTHING to maintain his saftey. She was good to go after hearing that. My last school was more annoying with the prodding and even wrote a letter to all the teachers and staff... I told them it was totally unnecessary and ended up disputing several of the "facts" in their stupid letter. Ultimately, they had to re-write the fricken letter and resend it in order to be accurate. I hated that school - completely useless while trying to micormanage everyone's lives. Hopefully, you have a normal school.

Anyway, I'm confused by why you feel so strongly that you need the drs to offically dx your child. If they tell you to feed him gluten containing food, would you? You feel confident that his issues are resolving on a gluten free diet? Stick with it. If new problems crop up, or the problems persist to the point that he needs medical attention, then take him back. A gluten free diet won't harm you child. It will make further testing null and void. But if they're only trying to prove Celiac---- again---- then who needs the gluten?

[Jnkmnky]

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Here's a link to get you started in organizing a R.O.C.K. chapter in your area. Also look into the Celiac Walks that happen in May. This will be the ..5th or 6th walk. I forget. I've been to all but can't remember!

[krisb]

[Why are you wanting them to say he can't have gluten? People in this world are on all sorts of diets. You don't need an official dx of celiac disease for your child.]

You are right. i think i just needed to hear it. I think I'm just so annoyed that I complained to Dr.'s his entire life about his health and they never took me seriously. I had to do all the work myself and as much as all the evidence is there for the Dr.'s to see, they still didn't help me.

His school is pretty good. He has severe food allergies so they all know him. He has a picture with all his food allergies and what to do if he goes into anaphlaxis. He also wears a medic alert braclet. I already told the nurse about my 2 boys having celiac and she added it to the record and offered support. He always brings his own lunch because of the food allergies so that is nothing new. Now both my boys will always bring.

I'm finding a lot of gluten free brands that aren't safe for my son. A lot of things contain nuts, seeds or peanuts. Plus he's allergic to soy and some fruits. He can't have apples and I noticed it's in a lot of breads. He is doing ok though. I made him a horrible pizza last night and he acted like he loved it. I think he does that for my benefit. he's so good. He even tried to smile when I made him grits. I'm just doing a lot more baking.

I noticed in your sig line that you went gluten free after reading dangerous grains. i'm reading that now and it is so interesting. His new Dr. also said she is reading that. I'm glad she is reading up on the subject.

[Guest nini]

I'm so sorry you had such a tough time with the Dr.s, I can relate. My daughter's ped. was young and willing to learn, but the ped. GI we went to was a complete useless idiot. BUT, because I had recently been positively dx with Celiac, I knew that had to be what was going on with my daughter as well. And yes, her records also showed a very clear record of deterioration after introducing solid foods, She was on so many medications as an infant it wasn't even funny... But I've had her on a gluten-free diet since she was 3 and she is now a very healthy 5 year old. Her school has been pretty supportive, I don't expect them to provide gluten-free options for her, so I make sure I do that myself. Pack a lunch, send her snacks, provide gluten-free pasta noodles and play dough for arts and craft projects, all that jazz...

Seriously, the Dr.s for the most part are inadequately informed on the subject of celiac, so it is up to those of us living with it to educate the rest of them!

[taweavmo3]

The sad truth is that most of us on here have a similar story to share. There are a few situations where celiac was caught before the child was in a seriously ill state of health, but that is not the norm. Our last ped was an extremely arrogant guy, who wouldn't even run a stool culture when Ben was in hospital, b/c he just "knew" what it was. I like my doctors to be confident, but arrogance is flat out dangerous.

Sorry you have all been through so much......your little boy sounds like such a sweetheart. Geez, my kids start complaining about dinner before it's even on the table! They don't mind the gluten free stuff so much, they just cringe at anything remotely green or tomato-looking on their plate.

At least it sounds like you have found the gem of a pediatrician you are in need of........hang on to that doctor for dear life. If she's reading Dangerous Grains, that's a great sign. I need to find a ped like that! We have a new ped now (the hospital incident was the last straw, B nearly died) but I haven't been entirely happy with him either. I'm giving him a bit more time before we change, but if I have to look around some more, I'll do it. God forbid any of our kids get seriously ill from anything, but if they do....you want to have a ped that listens to you, and that you can trust.

Oh, one more thing. If it makes you feel any better, our pedi GI wasn't very informative after my daughter's dx either. He seems like a pretty good doc in that he was the first one to listen to my concerns.......but as far as any info after diagnosis, he just told me to come to this website!

[Jnkmnky]

All these stories, sad as they are, make me laugh. I haven't had one iota of assistence from my drs. The newest guy, nice as can be, told me a celiac can eat RYE, OATS, BARLEY, AND SPROUTED GRAINS. It was straight out of a horror movie. Who ever dreamed of going to the doctor only to get advice that could level you? It's malpractice to suggest the diet mentioned above to a confirmed celiac. THANK GOD I don't require any medical support. THANK GOD! That advice I just got was a good as telling a peanut allergic person to go work with the elephants at the circus.