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Hopefulmama

How Long Does Dd Need To Be Glutened Before Blood Test?

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DD who is 2.5 years old has been off of gluten for 1.5 months. She has shown signs of improvement on the diet. That is enough for me, but not for DH. So we decided to get the blood test done. I know that it is not always accurate. How long should she be back on gluten to get the most accurate results? I forgot to ask her ped. today. I will call her tomorrow, but thought I would ask here also. Her ped. said that there are many false positives to the test, but not many false negatives. Is that true? Thank you for any and all help and input.

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other way around...many false negatives (especially in kids) few false positives. Unfortunately pediatricians (and even gastroenterologists often don't know a whole lot about celiac). Please, PLEASE don't put her back on gluten. I speak from experience, it is absolutely miserable. Is it really that important to your DH that he must make your daughter so awfully sick? And it's a long time that you need to go back too, at least 6 weeks. While it is vital that your DH be on board with the diet, your daughter's welfare should come first.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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I couldn't agree more with the previous post. To even hope for a valid blood test, you are looking, like HAK said, at LEAST 6 weeks, but in reality, closer to 2.5 to 3 months. And what would happen if her test came back neg? Would your husband throw away the dietary response and put her back on gluten? Do you think he would would go for something like Enterolab, which doesn't base their results on IgA? The problem with IgA based tests is that children are notorious for producing low amounts of IgA, which then skews every IgA based test. Enterolab does stool testing, and you do not have to be consuming gluten to get an answer. They also do genetic testing. I have never used them, but many on here have, and I'm sure could give you some advice. I hear some insurances even pay for it. Always a bonus :D


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Those blood tests are notoriously unreliable in children under six at the best of times. But with your daughter having been on the gluten-free diet for that long, she has probably completely healed by now, since children heal very fast.

What a terrible idea to destroy her villi again and make her possibly deathly ill, just to confirm what you already know!

From what I hear she would have to be eating the equivalent of 4 slices of bread a day for at least three to six months to MAYBE get a positive test result. It might take up to a year to do enough damage to get a positive (and even then it may not happen, because she is so young).

I agree with trying the Enterolab testing instead. Their tests are accurate up to a year after starting the gluten-free diet and will give you the answers you need to convince your husband.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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dont put her back on gluten just to prove what you know. A mothers instinct is rarely wrong. If your DH cant stand putting her on the diet without tests go with entrolab. She would need to be on gluten for about 6 months with the other tests .. way too long in my opinion.. and you still may not get a positive result. IMO dietry response should be enough in the under 6's when the tests are often false negative.. and theres no such thing as a false positive in celiac disease.

I would keep her gluten-free... if, when shes older she feels she wants an official diagnosis then she can get tests ... just make her aware of what gluten will do to her.


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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I agree with the other posters. I would not put her back on gluten. We just went through this last year with my son. He was on gluten for a good 7 months and yet we got all negative results, even though he had many symptoms return after he was gluten free before. I wouldn't put him through this again, we did Enterolab testing and it came back positive for gluten, soy and casein. We also did the genetic testing and he has both celiac genes.

He is now gluten free again for the past 4 months again and doing better then ever. He has gained a total of 2.5 lbs in that time and grew about 1.5 inches.

I also suggest to go with enterolab for testing as you don't have to put her back on gluten again.


~Melanie~

Mommy to:

Jonathan-10-02-2000, seasonal allergies and Asthma, taking Flovent, Claritin and Nasonex.

Owen-04-29-2005, GERD, 20mgs of Prilosec, 2.5mgs Zyrtec. Negative bloodwork and biopsies but great dietary response.

HLA-DQ 2,3 (Subtype 2,8) both celiac genes

Fecal Anti-Soy IgA 24 Units

Fecal anti-casein (cow's milk) IgA antibody 12 Units

Fecal Antigliadin IgA 18

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Thank you all for your help. We have decided not to have DD tested. I think her dr. while good intentioned is very poorly informed. DH and I initially agreed not to have her tested-just to do the diet. She seems to be breaking out in a lot of rashes, so we thought maybe she had additional allergies. That is why we took her to the ped. in the first place. I think the skin problems are gluten related. She doesn't think so and wanted to do the test first. So that is why DH thought we should get her tested. After reading your comments here and doing more research, I think we have made the right decision. It stinks how you have to be your own dr. You pay your dr. good money and they give you false info. Oh well. At least there are great resources like celiac.com! Thanks again everyone!

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