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My daughter had terrible stomach aches at 2 yrs. She was admitted to the hospital where they did a biopsy and called it "inconclusive". I thought she had Celiac...the doctors said they didn't

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The blood tests are NOT 100% accurate. I can understand how hard it is when one is in High School because I am in it myself. The only reason I am able to do it and stay strong about it is because I was SO ill for such a long time, I could never really go to school for a whole day! So, being gluten free is the best thing for me. Is she still eating dairy? If she is, that opens a lot of doors for food options. Also, if you want to have her talk to me (I know, it may be hard to convince her...lol)I would be more than willing to talk to her about food at school, etc. and most of all just be of support. I haven't been gluten-free for very long, but I am SO strict about it that I may be able to give her moral support.

my email is knshore@hotmail.com


P.S. Someone will jump in and give you more info on the whole blood result thing...they're not very accurate...they give a lot of false negatives.

Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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False negatives are absolutely possible with the celiac blood panel. False positives aren't, so if celiac is presented in the blood work, you're celiac for sure. The biopsy can also yield false negatives--the lower intestine is twenty-two feet long, so there is a real possibility of a damaged area being missed by the camera or the knife. Time and again you'll hear the brilliant people on this forum say that the only truly effective diagnostic tool is dietary response. That's the most frustrating thing aboput this illness...serious, far-ranging symptoms, and no cut-and-dry medical tool for diagnosis. :(


diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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Yes, blood tests can be false negative.

Whether your children have celiac or not, they obviously have gluten intolerance. It does sound like celiac though. Celiac presents differently in different people.

You have done everything you can possibly do to help your children and that is great. Sometimes, just like adults, something needs to hit someone hard before they'll listen. It's hard to be different in school, but not impossible. There are many on this board that attend high school or college and are gluten free.

I personally hope your daughter will understand that gluten hurts her body and that she will continue gluten free.

Has she been tested for heavy metals, parasites, viruses, fungus issues, or lyme? If her zinc and copper are still out of wack I would assume something else is going on as well. It could just be the gluten, but heavy metals do interfer with the minerals the body utilizes though.


Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)

The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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That is so interesting about your sons' teeth. Two years ago I went to see a new dentist becaue I had moved. Because of the move, I had gone a bit longer than 6 months between appointments, it was more like 8, but he found 4 new cavities, and 2 fillings that needed replacing. I just assumed my previous dentist just wasn't very good. Now I wonder, if this was an early clue. Recent X rays revealed some spots of weak enamel that aren't cavities yer that my dentist is keeping his eye on.

Anyway, as far as your daughter goes, has she noticed herself feeling any better this summer going back to gluten free? If she has at all, really emphasize that and connect it to her sports and goals, Ask her if she wants to make herself too sick to play. Tell her she may not notice too much now in terms of symptoms, but if she continues to eat it she will slowly get worse and possibly by the time she is in college be too unhealthy to compete. You know because you've watched her go through it all these years.

The blood test is secondary. I'm seeking a diagnosis myself for various reasons, but I don't question the improvements I've seen going gluten free. When all the medical testing is said and done,I will stay on the diet regardless. As a former dancer, if I had heard about and tried the diet a decade ago and got the amazing results I've seen in just 2 short weeks, I would've stayed on it and might have really gone far in my career. Instead, I was too fatigued to keep up, and first went into teaching, and then had to give it up altogether. I understand wanting to fit in, but frankly, I find your daughter putting her long term goals and dreams at risk for the short term benefit of fitting in appalling. You have sacrificed a lot to give her this opportunity to compete in her sport and not staying on her diet is like throwing it all away IMO.

Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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Guest dreams25

Hey there just in reply to your question are blood tests 100% accurate, here in Australia you can't be a memeber of a celiac society unless you have the biopsy, as they say is only accurate way to tell if you have the disease.

But i do had epilepsy most of my life, and once found to be celiac my symptoms have dissappeared, along with my many other medical problems.

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what is the powder under the tounge test? is it gluten? does it affect them within seconds? ::confused:: :blink:

but, The teeth thing is a dead giveaway, like everyone before me has said. That really points to celiac!

gluten-free since april 05

for the love of gluten-free rice krispies, can we all as a group realize that "celiacs" only refers to a group of people with celiac disease. it is not "celiacs or celiac's disease". it drives me nutso!

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Dear Meg,

Blood tests are not very accurate. My holistic physician diagnosed me with Celiac this year. The past few years, my teeth suddenly began chipping off. I had always had healthy teeth up until then. I have had digestive problems since birth.

I was taken off of formulas at three weeks old, because I spit all of them up. No matter if they had iron or not, whether it was Prosobee or something else, I did not tolerate it. My parents ended up having to put me on 2 percent milk. The issues only intensified as I got older. Eventually, by early adulthood, unbearable nausea, stomach pain, body pain, depression, severe reflux to the point I had to practically sleep sitting straight up despite taking Prilosec twice a day, and a plethora of other miseries only improved after going gluten-free.

We paid $300 to send my blood to a special lab in late 2000. They said the results were negative. I went to numerous doctors who said there was no way I could be Celiac. At my lowest point, I could not even speak I got so weak. My mother had to walk behind me in case I passed out. I got down to 84 pounds when I left the hospital, after the most hellacious experience of my life, from which I do not know if I will ever mentally recover. The morons told me I just had a chemical imbalance of low serotonin, which was causing me to feel sick when I was not.

They forced me to start taking Celexa. I am still stuck on it. I also was forced to go to a psychiatrist and psychotherapy. Well, I later lost my gallbladder at the age of 20 in 2003. That was yet another Celiac-induced health issue.

Many doctors know absolutely nothing about this disease. I got lucky that I switched doctors! Some researchers such as Dr. Kenneth Fine have more recently reported that the most severe cases of Celiac often have seronegative results. This makes sense. Sure I cannot go out to eat. However, there are a lot of things I can have. I thank God everyday that I found out at 24 instead of in my 30s or 40s when irreversible damage could have taken hold.




Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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