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Kaycee

Can A Negative Result Now

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At last my third son has been tested for coeliac, and luckily that is another negative. I am so happy for him. But there is still another son yet to be tested.

Alan who is 25 was told by his doctor that his results were negative. I told Alan to be aware that if he had stomach issues in years to come, to bear in mind coeliac. What I found interesting was that his doctor said, going by his results it is highly unlucky for him to have coeliac, and to not worry about getting it. Is that true or not? The doctor did a whole raft of tests on Alan, checking his cholestrol etc, and they all came back fine.

How many have had a negative test only to be tested positive at a later date?

Catherine

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My son had a negative (well borderline actually) blood test - but had a repeat test a year after (coupled with symptoms) which came up high positive.

You can develop celiac disease at any age, so the fact that your son has had a negative blood now doesn't mean he won't EVER get celiac disease.

Keep your son aware of all the symptoms so if he develops any he can get a repeat test. :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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Thanks Nikki, I thought the doctor could've had it wrong, as we are told that there has to be genetics and another trigger, like stress at some stage in your life to set of coeliac. I think the doctor thought that because all his other tests were good he had less chance as well.

But I must add, that right throughout my life the only bloodtest results to cause concern, apart from the coeliac test were low iron counts when I was pregnant, and at no other time until last year. I feel I have had coeliac for about 10 years undiagnosed, as that is about as long as I have had symptoms. But because of my low iron counts when pregnant, it probably stretches back 25 years ago.

It just re-iterates that doctors don't know everything. But I will keep at Alan about symptoms etc.

All I wanted was someone to say yes, they have had two tests one negative and the other positive to confirm what I believed.

Catherine

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Catherine, also keep in mind that many celiacs have had false negatives too. I gave up on doctors figuring this out. I have been gluten free now for 5 yrs and if I wanted a test now, I would have to do a gluten challange and eat gluten for some time and I won't, it's not worth having a piece of paper saying I have what I already know I have. Deb


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Guest cassidy

My mother was diagnosed at age 53. I can't say when she started having symptoms but I know they got dramatically worse in the last two years. So, I would imagine at some point in her life she would have had a negative blood test (if she had been tested).

I have had symptoms my whole life but was always misdiagnosed. My blood test was negative and I and 100% sure I have a gluten problem, and not just a little one. I am extremely sensitive to cc and I feel wonderful on this diet.

So, unfortunately doctors don't know everything about celiac, and blood tests are only about 50% accurate. I would look at the symptoms and if someone in your family isn't feeling well, they should consider celiac regardless of what a doctor or tests say.

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The Univ of Chicago recommends that a child who has a parent, sibling with Celiac be tested every 3 years with the TTG. I found out I have Celiac last September - my doc tested all my kids immediately (all were negative) and recommends another test in 3 years.

AK


Amanda

Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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My friend tested positive to Celiac with blood test but biopsy was negative so Dr told her she was OK and not Celiac. Wrong ?


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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Georgie, your friend may be gluten intolerant, which is what I am. My blood test and my biopsy were BOTH negative, but when I tried the gluten-free diet in an attempt to get rid of my celiac-type symptoms, it worked like a charm. GI symptoms, pain, headaches, exhaustion, insomnia, etc. all went away like someone flipped a switch. My doctor was blown away and very happy for me. The last time I saw her she said that she has several patients now just like me. Negative blood and biopsy, but "immediate and life-changing results" from changing to gluten-free. She now suggests trying the diet regardless of results. It's a healthy way to eat anyway, so there's generally no reason not to eat gluten-free.

Sometimes you just need to try the gluten-free diet and see if it helps. She could always come on here and get advice, ideas, support, etc. This is a really open and helpful board. We don't check your test results at the door or anything. B)

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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This topic was also helpful to me.

My son has negative test for celiac, but is positive on both DQ2/DQ8 gene tests. He shows symptoms and has a below average range for White Cell Count and Lymph.

Thankfully the doctor has ordered a bowel biopsy and the doctor at the large hospital is a Celiac Specialist (for 30 years) so I am hoping that we can get results from his biopsy.

Peta

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Guest nini

I've talked to MANY people who had negative tests for YEARS before getting so sick that they finally had a positive test. It happens all the time. In my experience of dealing with people, I've come to the conclusion that both the blood tests and biopsies can only detect it when the damage is far enough along that there are now multiple other health problems as well.

Georgie, if your friends blood work was positive, it IS Celiac despite what the Dr.s say.

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Thank you everybody for your responses.

Well I just hope my son has a little distrust for the medical community and will listen to his body when or if it shows symptoms of coeliac. It makes it a bit harder that he is overseas. I know we would all like to trust our doctors, but I've had experience where they have got it wrong for me.

I agree with you Nini, if Georgie's friends result was a positive blood test, then it is coeliac. That is precisely the way I was diagnosed, and the diet has made all the difference to me. I am living again.

Catherine

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