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I have been feeling sick forever and a few months ago they did a blood test to check for Celiac, which came back negative. Then recently they did an endoscopy. I wasn't really sure what they were testing for, didn't really even think it was for Celiac at all. They told me after the procedure that everything looked good but that they did 3 biopsies (one of the duodendum, one of the esophagus, and one of the stomach lining). Then today the dr. office called me and said that the doctor wanted to see me on Monday. She said that they got the biopsy results back and that the results "suggest that you may have celiac disease" She is not a nurse and couldn't tell me on the phone. So now I have to wait until Monday. Of course my brain is already going and I am almost certain she is going to say that is what it is...and I have been googling everything like crazy and driving myself nuts. But some of the weird symptoms I have had seem to be symptoms and it all seems to make sense now. Anyhow, so what she said probably suggests I have it, doesn't it? My husband says "you never know...she didn't say you have it or anything." Ugh...

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I am sorry that you are going to have to spend the weekend on tenterhooks awaiting your appointment on Monday. Oftentimes the results of a biopsy are not truly definitive, but are indicative, meaning that it is quite possible that you either have it or are in the early stages of developing it. I think if I were you I would prepare myself for the possibility that the doctor will recommend that you start a gluten free diet. If I were to receive that kind of result, I would not wait until I developed a full-blown case, with some possibly other nasty authoimune disease to go along with it; I would start the diet right away. But wait to hear what the doctor has to say, while being prepared that that will be it.


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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I am sorry that you are going to have to spend the weekend on tenterhooks awaiting your appointment on Monday. Oftentimes the results of a biopsy are not truly definitive, but are indicative, meaning that it is quite possible that you either have it or are in the early stages of developing it. I think if I were you I would prepare myself for the possibility that the doctor will recommend that you start a gluten free diet. If I were to receive that kind of result, I would not wait until I developed a full-blown case, with some possibly other nasty authoimune disease to go along with it; I would start the diet right away. But wait to hear what the doctor has to say, while being prepared that that will be it.

Thanks! I guess only time will tell...but I did some research though so I am mentally prepared for when the doctor tells me. What is more concerning to me is that I think my 3yo daughter may have this. She is on the smaller side and has real problems with constipation and has had bouts of diahrhea and no real appetite. Her stomach is upset a lot and a few times she has been to the bathroom and has had fat deposits float up to the top. It would be a big challenge for her because she is a very picky eater. She does like her fruits and veggies some, but she practically lives off of pasta and crackers. Thankfully she likes rice. Anyhow, if they do say it's positive I will need to get her tested too. Probably test my son as well but he has no symptoms.

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Thanks! I guess only time will tell...but I did some research though so I am mentally prepared for when the doctor tells me. What is more concerning to me is that I think my 3yo daughter may have this. She is on the smaller side and has real problems with constipation and has had bouts of diahrhea and no real appetite. Her stomach is upset a lot and a few times she has been to the bathroom and has had fat deposits float up to the top. It would be a big challenge for her because she is a very picky eater. She does like her fruits and veggies some, but she practically lives off of pasta and crackers. Thankfully she likes rice. Anyhow, if they do say it's positive I will need to get her tested too. Probably test my son as well but he has no symptoms.

I would ask them to test at least your daughter now no matter what your test results. Some of us do become addicted to gluten and that might be what is causing her strong preference for gluten foods. After everyone is done with testing you might want to make the whole house gluten free at least for a while to see if it helps.


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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I think you may also find that it's not as difficult as you think. The hard part is learning where possible contamination sources may be but as far as feeling restricted, I don't at all. There are so many gluten free things out there that taste quite good and my guess is she wouldn't know the difference. It definitely takes a learning curve. I've just started myself. I thought it would be more difficult. It may become tougher as I test for other allergies but wheat/gluten alone isn't bad at all. Good luck. You may find getting your husband on board will be the toughest battle. :)

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I think my 3yo daughter may have this. She is on the smaller side and has real problems with constipation and has had bouts of diahrhea and no real appetite. Her stomach is upset a lot and a few times she has been to the bathroom and has had fat deposits float up to the top. It would be a big challenge for her because she is a very picky eater. She does like her fruits and veggies some, but she practically lives off of pasta and crackers. Thankfully she likes rice.

It's funny, my daughter was a very picky eater before going gluten free and she too could live on pasta and crackers. She is WAY less picky on a gluten free diet. I think it probably has to do with her tummy feeling better. I think too that when you crave gluten foods like that it is an indication that there is a problem with the particular food and a lot of times you'll go through withdrawals after removing it from your diet. There are plenty of kid friendly gluten alternatives out there and you may find that she adapts very easily, even more so than many adults. Hope everything turns out good for you! :)


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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I have been feeling sick forever and a few months ago they did a blood test to check for Celiac, which came back negative. Then recently they did an endoscopy. I wasn't really sure what they were testing for, didn't really even think it was for Celiac at all. They told me after the procedure that everything looked good but that they did 3 biopsies (one of the duodendum, one of the esophagus, and one of the stomach lining). Then today the dr. office called me and said that the doctor wanted to see me on Monday. She said that they got the biopsy results back and that the results "suggest that you may have celiac disease" She is not a nurse and couldn't tell me on the phone. So now I have to wait until Monday. Of course my brain is already going and I am almost certain she is going to say that is what it is...and I have been googling everything like crazy and driving myself nuts. But some of the weird symptoms I have had seem to be symptoms and it all seems to make sense now. Anyhow, so what she said probably suggests I have it, doesn't it? My husband says "you never know...she didn't say you have it or anything." Ugh...

Your story is somewhat like how I was diagnosed. I had the biopsy first - to look for an ulcer - and they looked at the biopsy results and saw celiac. My blood test was negative...an all-too-common experience.

And speaking as a parent who had a kid sick with probable celiac until he was 15, your daughter will be lucky if it prevents/clears up any problems. Taking a 3yo gluten-free is much easier than convincing a teen or pre-teen. The saddest moment for me as a mom was to learn that my 15yo experienced pain every time he ate and thought it was normal: It was only after he stopped eating gluten that he said "I didn't know that eating wasn't supposed to hurt."

I'll cross my fingers for you that if you take her gluten-free, that she'll be happier and healthier for the rest of her childhood. Good luck!


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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