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AliB

Stupid, Stupid Doctor

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Oh Boy.

My little grandson, Connor, is just 7. He was getting terrible bowel problems, constantly messing himself. When I discovered that I am Celiac/GI, I suggested to my daughter that she get him tested and try him on a gluten-free diet.

She took him to the Doctor at the end of April (a locum) and he agreed that in view of the family link (my Mum was almost definitely Celiac) it would be a good idea to get him checked out. He arranged for her to take Connor to the hospital to have his blood taken and also to see a Pediatrician.

The blood test came back 2 weeks later and the Doctor said that everything seemed fine but to still see the Ped, as my daughter said that he did seem to be better on gluten-free. The appointment to see him is next Monday.

Today she thought it would be a good idea, especially as she is still undecided whether it is gluten that is the problem or just stress (and at my prompting), to find out what the actual results were of the test.

The receptionist gave her a print-out of the results - and no-where on it does it list the Celiac Panel. There must be 30 different results, and not one of them was for Celiac! Our daughter said that when the Doc gave her the blood request sheet she didn't see anything on it about Celiac.

He ticked all the normal test boxes, but they usually have to write 'Celiac' as a separate request on the sheet. She rang the Surgery again and spoke to another receptionist who was more knowledgeable - her daughter has been tested for it - and she looked at the results and couldn't find anything about Celiac either!

So now it looks like poor little Connor is going to have to start all over again eating gluten and going through months of all this constant diarrhea and the stress involved, just so they can do it all over again.

AAAAAARGH!

This Doctor obviously did his Celiac Training on the Planet Zog!

Sorry - just needed to vent................


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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Ali, I'm so sorry to hear that. Doctors can make our lives most difficult sometimes!!! I hope your daughter makes some progress quickly. It's so tough to see our kids sick.

Sending hugs your way!!!

My little guy is Connor too!! What a fantastic name B)


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Ohh, Ali, I'm so sorry that happened!!! :(

I'll be thinking about poor Conner!

One thing to keep in mind, is if your daughter puts him back on full-time gluten, Conner may show worse symptoms than before. Maybe that would be enough to convince her..?


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Ali, that's terrible...poor Connor :( What the heck did the doctor think he was testing for....did everything your daughter said go in one ear and out the other? :angry:

I hope it won't be too hard on him--is he off gluten right now? If so, how does he do off of it?


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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There seem to be so many experiences like this out there, I am thankful that we had good Gastro doctors that worked with us, our transition was so much easier. I hope that they are able to find out for sure this time so that he can know one way or the other. I don't know how they make those kind of mistakes, especially when you specifically ask for him to be tested for that!


May 2007 - Emily went dairy free

April 2008 - took her back to pedi - she was getting worse

April 24, 2008 - first consult with Pedi gastro specialist

May 5, 2008 - doctor's office called with blood test results - Celiac levels highly elevated

June 9, 2008 - Emily's endoscopy

June 11, 2008 - doctor's office called with Emily's Celiac diagnoses, she has it

So now our new life begins, and hopefully that will be a happier, healthier life for her! I am glad I followed that little maternal instinct telling me something wasn't right!

Here's my little sweetheart:

http://img.photobucket.com/albums/v104/you...pictures018.jpg

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Ali, that's terrible...poor Connor :( What the heck did the doctor think he was testing for....did everything your daughter said go in one ear and out the other? :angry:

I hope it won't be too hard on him--is he off gluten right now? If so, how does he do off of it?

I think it is definitely gluten that is the catalyst for his diarrhea and stomach ache issues. When he has been here during the school breaks and on a guaranteed gluten-free diet he is fine. Generally he has been better when back home and at school apart from the occasional accident and some irritability - we are never sure whether that it is a glutening either from school meals (he has been given dispensation for special diet and is supposedly on gluten-free at school) or perhaps from odd snacks from other kids' lunches (well he is only 7!)

Low blood sugar does seems to be a problem for him and he often wakes up very grumpy and is usually in a foul mood when he comes out of school at the end of the afternoon! His Mum was exactly the same. I don't know if dairy is an issue or not - certainly it doesn't seem to be that obvious.

She is selling their house and hopes to be up with us by the Summer recess so I am hoping that we can really get to grips with it all. I am convinced because I know how gluten affects me, but because she does not get any obvious symptoms (although I am convinced that GI is behind her emotional and hormonal issues), I'm not sure she is as rigorous or disciplined with it as I am. She has been trying to stick to it for Connor though.

In some ways perhaps having to put him back on it and monitor his response for a while might just be enough to convince her (and convince her to get tested herself!)


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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I totally agree with what everyone else said. Poor Conner. But one good thing is for sure, at least you know things now and not after 2 or 5 or 10 or 20 + years like others, before he got worse.


Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

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Absolutely - took me 50 years to figure mine out! That's why I was able to get my daughter to take it more seriously for him.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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If he has celiac with positive serology, it can take a year (it did for my son) for his TTG to go back to normal. So, if he's only been gluten-free for a month, I think it's OK to do the full ELISA panel now. You have a good chance of getting an accurate result if it's positive.

If it's negative, you can continue with the diet and let him do a gluten challenge if he wants to when he's older.

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