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Testing For Celiac Disease


JoyceG

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JoyceG Newbie

Hi my name is Joyce. My 3.5 year old son has autism and has been following a Gluten-free Casein-free diet since October 2004. He has made great progress with the diet. A number of kids with autism have a family history of celiac disease.

I decided to go Gluten-free Casein-free due to allergies(sinsus), ezcema and digestive issues in July 2005. It seems to be helping. I have not knowningly had gluten containing food. I did have McDonalds french fries on two occasions before McDonalds announcement. Recent blood work indicates that I have an elevated C Reactive Protein level. This is an indication of imflamation somewhere in the body.

I now want to confirm whether or not I have Celiac Disease (financial reasons). My doctor has ordered the Antibody to wheat protein test blood test.

Since I have been Gluten free for more than six months, how many days before the test do I need to reintroduce gluten into my diet to see if the antibody is present? How much of an infraction do I need, a weeks worth of gluten filled foods, a couple of days or one meal? Does the test require a fasting period?

Joyce


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lovegrov Collaborator

There is no set period for everybody. It really does vary. Most celiac experts say you should be eating gluten for a minimum of 12 weeks, but even then who knows. I think the amount per day is something like 4 pieces of bread -- a fair amount. There's no fasting period for the blood tests but a short time for the biopsy.

richard

Rachel--24 Collaborator
There is no set period for everybody. It really does vary. Most celiac experts say you should be eating gluten for a minimum of 12 weeks, but even then who knows. I think the amount per day is something like 4 pieces of bread -- a fair amount. There's no fasting period for the blood tests but a short time for the biopsy.

richard

I agree with Richard...at least 3 months with a good amount of gluten eaten daily. Eating gluten for only a short time before testing (especially having been off it for 6 months) will likely give you negative results even if you have Celiac.

JoyceG Newbie

Thanks for the quick replies. This is a different response than what the Physicians Assistant at my Doctor's gave. She indicated a weekend of gluten filled foods should be enough. I'm not sure if I want to go through with the test now. I have gotten use to eating this way. I feel better and my allergies have improved (no ear or sinsus infections and no longer taking claritin or algeria on a daily basis). I have not had any stomach issues since I had a grilled chicken salad that I suspect was marinated in soy sause, my boss also had stomach issues the next day. He recovered in a day. It took me two weeks.

I guess this is what I get for playing doctor and not going through the proper procedures to get on the diet. I was hoping to be tested so I could be confirmed or not confirmed as Celiac so I could deduct the difference in food on our taxes. Since Autism is not considered life threating the diet foods are not tax deductable based on my sons condition.

Joyce

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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