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Debbie B in MD

Just Saw The Gi For My Daughter Argh!

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I am a bit frustrated. I know I am not a doctor, but in the last few weeks I have read ALOT.... He told me false positives on blood tests are common and false negatives on endoscopy biopsies are rare. These are both a contradiction to what I have learned. He also intimated that celiac is the lastest panacea. He wants to do a scope. I do not. We scheduled it for April 27th and she is to eat gluten. My thougths are to eat gluten and see if her symptoms come back. Then that way it doesn't matter if it is celiac or not, she shouldn't eat gluten. The only thing is that thus far her symptoms have been mild. So if nothing happens, then what. He did say that her blood work certainly makes it likely and her bathroom issues have improved. I just don't want her sedated. I haven't talked to Rob about this yet so we will see what he has to say. ARGH!!!!!!

Her ttg was >100 reference range >11

gliadin >100, refernece range >5

She has Hashimotos and juvenile rheumatoid arthritis

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Dang with blood work that positive what is he thinking is wrong with her? He clearly doesn't know what he is takling about.


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.

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I think that you know your daughter best and are probably right and you know how to make her well.

My son is 6 and I knew he was going to go gluten-free anyway, no matter what the outcome, but I decided to do the scope so we could try to get a solid diagnosis. We don't need one now (his school is wonderful and will gladly honor any request from a parent) but we may need a doctor's note in the future and I didn't want him to have to do a gluten challenge after being off gluten for an extended time.

Your scope date is not too far away. A couple of weeks and then you would be done. If the test comes back positive, you will know for sure and never wonder about it. Never have to test again. Imagine that.

I was very worried about the scope and even made my husband take him since I knew I would be a nervous wreck. Everything went beautifully (Children's Hospital) and he actually had a great time. After hearing how much "fun" it was, his older brother was jealous.

Cara

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Your doctor is flat out wrong about the blood work. You may want to ask for a second opinion. You also mention she has improved on the diet. She would need to do a much longer challenge than just a couple of weeks for the best chance at a positive diagnosis with the scope. Even then if the doctor does not do enough biopsies or the damage is patchy she could still end up with a false negative. With blood work that high there is no doubt that she needs to be gluten free and in addition there is one gene associated with celiac, the one I have a double copy of, that is considered an RA associated gene here in the US. You may find she gets some relief from the RA symptoms once she has been strictly on the diet for a few months. Not a for sure, of course, but mine has been in complete remission since about 6 months into the diet.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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How old is your daughter? If your child is still in diapers, that can complicate the gluten challenge further.

An endoscopy could rule out other disorders that may be co-existing with Celiac.


Michigan

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You are the mom. If your kid feels better when she eats a certain way, why do you care what the doc says about it? He's not the one inflicting pain on his child.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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An endoscopy could rule out other disorders that may be co-existing with Celiac.

These would show up even if she were gluten-free.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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All the doctor knows are the tests he has in front of him. Your daughter is a complex human being and may, or may not, have an accurate response to those tests.

Since you (she) can choose what she wants to eat, she can choose to eat in a way that is healthy, and makes her feel good. You don't need anything from a physician to make these healthy choices.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Oh, I forgot to tell you.... On the way home we stopped at Subway for lunch. Gluten-fest. An hour later her stomach was upset, she had a headache and she needed a nap. It could have been exhaustion from being upset, but I am really sure it was the gluten. She hasn't had any since, feels well, and we have a second opinion to schedule. But my mind is pretty made up. We will at the least postpone the scope, go several more weeks gluten free and then challenge. We will probably wait until after her recital in June. She is a ballet dancer. Of course, then she will have been gluten-free for 2 months and the scope might not show anything then. ???? Gluten-free, gluten challenge seem like a much better option to me. Another thing, a local girl, 16, died last week while having her wisdom teeth out. Anesthesia allergy. I am a worrier. I guess all of my own celiac induced anxiety hasn't gone away. Thanks for your input. I really appreciate it.

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This is what I know (not much, but for what it's worth) :P False positives (blood or biopsy) are rare; false negatives (either one) are pretty common. Gluten intolerance is gluten intolerance, whether you call it celiac or something else. But whatever you do, do not call it IBS!!! Going gluten free and then challenging is fine, but don't expect any endoscopy results after that to mean anything unless you are willing to have her eat gluten for two to three months before the endoscopy. It will tell you if she is gluten intolerant or not. All gluten intolerants should avoid gluten.

Period.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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