Testing Question - Multiple Q's

[wmdcookes]

Okay, so, my husband's family is being diagnosed with celiac left and right. My FIL has been a celiac for 20+ years, my SIL is has fibro/gluten sensitivities (no positive blood results) and my BIL and niece were both diagnosed severe celiacs last week. 

 

We have five children (9m twins, 2, 4, 6) and are having bloodwork done for all of them, but I wanted to take a list of exactly what they need to be tested for, just to make sure we do everything. My 4 year old is the red flag for me - my mother's intuition tells me that something isn't right with her, so I want to make sure we're taking the right steps. 

 

My husband is having a new panel drawn on Monday - he had a celiac panel done about 7 years ago and needs to be redrawn now. 

 

I had what I'm told is a celiac panel (I never saw the paperwork) but was gluten-free at the time and my results were "borderline." I have chronic mouth ulcers and ulcerative colitis for 15+ years. My question is, should I spend this weekend eating gluten and be retested with DH? 

 

Bottom line, there are a lot of us and the prevalance of gluten issues in the family leads me to believe that a higher number of kids means a higher risk of gluten issues in our household, just doing the numbers. I want to make sure we do this right, and am not sure what to do right now to  make sure we're getting the clearest results for DH, myself and our children with the ages that they're at. Help! 

 

 

Thank you! 

[MChase]

Okay, so, my husband's family is being diagnosed with celiac left and right. My FIL has been a celiac for 20+ years, my SIL is has fibro/gluten sensitivities (no positive blood results) and my BIL and niece were both diagnosed severe celiacs last week. 

 

We have five children (9m twins, 2, 4, 6) and are having bloodwork done for all of them, but I wanted to take a list of exactly what they need to be tested for, just to make sure we do everything. My 4 year old is the red flag for me - my mother's intuition tells me that something isn't right with her, so I want to make sure we're taking the right steps. 

 

My husband is having a new panel drawn on Monday - he had a celiac panel done about 7 years ago and needs to be redrawn now. 

 

I had what I'm told is a celiac panel (I never saw the paperwork) but was gluten-free at the time and my results were "borderline." I have chronic mouth ulcers and ulcerative colitis for 15+ years. My question is, should I spend this weekend eating gluten and be retested with DH? 

 

Bottom line, there are a lot of us and the prevalance of gluten issues in the family leads me to believe that a higher number of kids means a higher risk of gluten issues in our household, just doing the numbers. I want to make sure we do this right, and am not sure what to do right now to  make sure we're getting the clearest results for DH, myself and our children with the ages that they're at. Help! 

 

 

Thank you! 

I have read that you must eat an equivalent to 2 pieces of gluten bread for 6-8 weeks (some say 12 weeks) to get accurate results if you have been gluten free for any length of time.  If you do not do a gluten challenge, then the results are not accurate.  I am new to all this.  My Dr suspects that I have Celiac or Ulcerative Colitis or both.  I go see a GI next week (been waiting over a month) and was told not to change my diet whatsoever so that my results will not be skewed.  Hopefully someone with more knowledge will be able to answer your question.

[GF Lover]

WMD,

 

MChase is correct.  You must be eating gluten prior to testing.  And being gluten free prior to your last test would have certainly returned negative results.  If the "paper" diagnosis is not that important to you then you are good to go. 

 

Good luck with all the testing. 

 

Colleen

[nvsmom]

If you had a borderline celiac test test after you were already gluten-free, I think you should consider further testing or go gluten-free. It took me over a year of being gluten-free before some of my tests got down to a borderline level; they were pretty high when I was still eating gluten.

 

When you get your kids tested, try to ensure that you have the deaminated gliadin peptide (DGP) tests done as they tend to do a better job of detecting celiac disease in kids. Also, try to have both IgA and IgG versions of the tests done as some kids tend to have positive IgG tests and not be positive in the typically run IgA tests.

 

Be aware that celiac tests aren't considered completely reliable in toddlers and babies. False negatives are higher in that age group.

 

If the kids are negative and you choose to allow them to continue eating gluten, retest them every few years as celiac disease can develop over time. Of course if you suspect a problem and the blood tests or biopsy don't support a celiac disease diagnosis, you can always make your household gluten-free anyways. This happened in my home and going gluten-free was a very positive experience for my children.  

 

Anyway, the celiac tests to ask for are the:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG
• EMA IgA (often positive in those who have had untreated celiac disease for a long time and generally not as good a test for young kids - there are exceptions)
• total serum IgA (a control test to ensure you make enough IgA for accurate results, about 5% of celiacs don't)
• AGA IgA and AGA IgG (an older and less reliable test)

Make sure you all are eating gluten in the weeks before the tests or results may not be accurate.

 

It's a good idea to get copies of all labs too. Some doctors will say you are normal as long as you are "near" the normal range or barely in it. For example, my lab's tTG IgA's normal range is 0-20. A patient with a 1.2 can be pretty sure they are normal whereas a patient with a 19.8 or a 20.6 may be told their results were normal, but are they normal for sure? KWIM?

 

Good luck.  Let us know how it goes.