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Doctors Don't 'believe' In Intolerance, Won't Test For celiac disease


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8 replies to this topic

#1 sydneysmommy

 
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Posted 07 March 2011 - 07:15 PM

I am 30 and was diagnosed with celiac disease 9 years ago after suffering my entire life (since I was around 5) with chronic illnesses. I was a sick child my whole life, and it made things so difficult for me. (ear infections, joint problems, asthma, anxiety, insomnia and migraines starting when I was 7 & 10, and I caught everything going around and seemed to get whtever it was to the point I'd be hospitalized. My family was fed up with me pretty quick and I was deemed a hypochondriac. I felt so blessed to finally have an explaination for all those years of illness to be able to present something tangible and medical and say I'm not nuts).

Long story short: I DO NOT want my 2 girls to have to go through their lives the way I did.
If they do not have celiac disease, I'll be the first one to sigh in relief. But I just want to KNOW!!!

Why don't their doctors "believe in" gluten intolerance, sensitivity, or want to test either one for Celiac????

Both have had symptoms that I consider red flags and especially the fact that their mother has Celiac, I wonder why they wouldn't want to be on the safe side?
The pediatrician made some comment that she doesn't want the 5yo on a gluten free diet bc if she does that now, she won't build up a tolerance to it later in life. And she doesn't really buy into the intolerance "deal" because if that's the case then we're all intolerant to one thing or another and that just spooks everyone on some level which spirals out of control.

So after the youngest (21 months old) began having severe gut problems I just went behind pediatricians back and took her to a Gastro, and he suspected and wanted to test for celiac but not until she's 3?



But I keep hearing about intolerance and sensitivity and others getting this. Kicker is that bother girls' schools will not feed them a gluten-free diet without a doctors note.
So how can I do this?


5yo:
for most part, she's normal. not too many symptoms.
but intermittedly she will have spurts of extreme anxiety.
suffers insomnia like I did
is also getting headaches a lot now
asthma
I had her on gluten-free before and she says she WANTS to go back to gluten-free bc it makes her feel better.


21mo:
10th percentile
goes months without growing
HUGE belly
either constipated or the opposite
(removed lactose, symptoms improved, but belly gets really big again after eating)
gas
fussy after eating (literally belly blows up so big she's too large for high chair tray and it causes her pain)
a lot of ear infections, has had 2 tube surgeries and adenoids removed
doesn't eat a lot, picks her food. eats healthy, but just not a lot.
generally sleeps very well though
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Sara, Austin TX
Diagnosed Celiac Disease
2001 via endoscope
gluten free for 10 years!

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#2 GlutenFreeManna

 
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Posted 07 March 2011 - 07:21 PM

Find another doctor! They should test your kids just based on the fact that you have celiac alone. That said, however I have read that false negatives on the blood tests are more common in children. Look for a D.O. instead of an MD if your insurance allows as they are more likely to accept a diagnosis based on dietary response and genes even if the blood tests are negative.
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#3 eatmeat4good

 
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Posted 07 March 2011 - 07:59 PM

I know the world has yet to learn of this disease, but your Dr.'s response is inappropriate.

All family members should be tested. It is in the medical literature.

I also don't understand the gastro not wanting to test until age 3!

If I were you I'd try again to find other Dr.'s who WILL test.

Keep jumping Dr.'s until you find one that understands Celiac.

If that had to go on too long, I wouldn't be able to do it. (Dr. searching and feeding the kids gluten, that is)

I'd take the kids gluten free, send their lunch to school and tell them it is serious as they grow up.

Unbelievable how hard you have to advocate even with a postive test in the family. Whew! Hang in there.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#4 srall

 
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Posted 07 March 2011 - 08:06 PM

People have to build up a tolerance to gluten? That is alarming in and of itself.
I believe (just a theory) that celiac is just one part of gluten intolerance. Some people who are gluten intolerant may develop celiac, while others develop anxiety, thyroid problems, diabetes etc etc.
Whatever the real story is I know this much. If your kids are showing improvement on a gluten free diet, I believe you have found your answer. And get a more supportive doctor. My daughter tested celiac but her pedi told me to keep her off gluten (and dairy/corn) based on a positive (VERY positive) response to the diet.
Good luck. Anxiety and migraines are not normal in children.

I am editing this because it should say "my daughter tested NEGATIVE for celiac"
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#5 kareng

 
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Posted 07 March 2011 - 08:10 PM

Go on the websites of the Celiac centers. Print off info about testing first degree relatives.


http://www.celiacdis....net/factsheets

http://cpmcnet.colum...3-Diagnosis.htm
This one says info for doctors and list relative as a reason

http://www.bidmc.org/celiaccenter
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#6 Roda

 
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Posted 08 March 2011 - 04:55 AM

Find another doctor! They should test your kids just based on the fact that you have celiac alone. That said, however I have read that false negatives on the blood tests are more common in children. Look for a D.O. instead of an MD if your insurance allows as they are more likely to accept a diagnosis based on dietary response and genes even if the blood tests are negative.

Just my personal experience. A D.O vs. an MD doesn't guarantee you'll get any further. My children's pediatrician is a D.O. and he REFUSED to test my kids after I was diagnosed. I was so mad! They were both seeing an allergist/immunologist (who was an MD) at the time and ordered the tests no questions asked. We see a different allergist now due to insurance reasons, but I'm so happy with the new one. We see a NP at the office who works and consults with an MD and they are the ones based on my youngest son's tests, recommended he go gluten free. They also, despite my oldests son's tests being negative, recommend gluten free for him also. I am waiting on a gi consult on the oldest since I didn't do one on the youngest one.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#7 sydneysmommy

 
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Posted 08 March 2011 - 05:39 AM

Thank you all.

I am calling in 30 minutes to leave a message with the GI department at our children's hospital. According to our local magazine, it has the best pediatric gi there. I'll have them both tested next week if it kills me.

My question is if they are negative (though I strongly suspect the little one has celiac disease), how do I have them tested or possibly diagnosed with intolerance? or sensitivity?

Like I said... their schools WILL NOT feed them gluten free diets without a doctors note.
:(

which kills me bc i can control what goes on here at home and feed them mostly gluten-free here anyway (easier bc I eat gluten-free, though my husband doesnt and that's another story)... but when they go off to school it's different.
I pack the 5yo's lunch so it's a bit easier for her but next year I cannot do that (private school) without a doctors note. and the 21mo cannot have outside food in her school without a doctors note; I had to jump through hoops just to get them to give her lactose free milk.
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Sara, Austin TX
Diagnosed Celiac Disease
2001 via endoscope
gluten free for 10 years!

#8 srall

 
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Posted 08 March 2011 - 07:17 AM

Forgive me if I am misinformed, but I don't think there are tests for gluten intolerance. I think it's based on how you feel and how you respond to the diet. I would be floored if my daughter's school refused to let me feed her and would continue to feed her foods against my wishes with or without a doctor's note. Luckily, my doctor would write a note for me.

I won't encourage you to find new schools, but I think you can find a doctor who will support you and your decisions. I will say my doctor was supportive because we had been watching my daughter's health deteriorate quickly over the course of months, and she was responding to the diet, so the doctor saw results. Plus he said it was becoming so common in other patients that he couldn't continue to deny gluten sensitivity exists. We are in MN. I don't know where you are, but if you were within driving range of Minneapolis, I could give you his name.
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#9 mommida

 
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Posted 08 March 2011 - 07:28 AM

If you tell the school feeding them gluten makes them sick. They really should not feed them gluten. (Who wants to clean up a pile of puke or "D"?) Without a doctors note they probably won't go through the special allergy free kitchen precautions.
Even though there are symptoms that strongly suggest Celiac, you should have testing done for your children to rule out other disorders. The GI doctor is correct that test results for a patient under 24 months is often not accurate. I do not agree with waiting til your child is 3.
Good luck. Finding the right doctor is a major part of getting diagnosed.
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Michigan




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