When Should I Have My Son Tested?

[Guest PastorDave]

Hello,

This is not Pastor Dave, it is his wife . I do not have celiac disease and I frequently eat gluten. I have never taken our son Jonathan off of gluten either, although both of us eat mostly gluten-free whenever David is home. We live in rural Missouri and I have not been able to find a doctor here who can give me clear advice about when to test Jonathan, or the new baby I am pregnant with. Jonathan is tiny, 37 inches tall, but only 30 pounds at four years old. His stools have been coming more frequently and he is having lots of accidents although he was fully potty trained over a year ago. What type of testing should I recommend my doctor do first? I am at a loss, but am scheduling a check-up for Jonathan this month and would like to try to bring it up again then.

Also, I am planning on nursing our new baby exclusively for at least six to eight months before introducing solids, and not adding gluten until well over a year. Is there any research or advice on whether I should eat gluten while breastfeeding (does it cross through breastmilk)? I have not been gluten free through the pregnancy, truthfully the thought never occured to me. We were still reeling from David's diagnosis (he was diagnosed in November and I have been pregnant since September.)

Thanks in advance for the advice!

Pastor Dave's wife - Christina

[GFdoc]

Christina - Your 4 year old son should most definately be tested. He could be small due to family genetics, or could be small because he has celiac disease and is malnourished from poor intestinal absorbtion! Ask your doctor to send off the following tests (and make sure he is not gluten free until the tests are done):

1. IgA quantitative (to make sure there is no IgA deficiency - this would render the next test inaccurate

2. Tissue transglutaminase IgA (tTG-IgA) - these tests are best performed by Prometheus or Mayo laboratories, but the tTG test is done by a computer so it may be OK even at another lab.

If the IgA levels are low, indicating an IgA deficiency, then your doc needs to ask for the IgG tTG test as well.

If your son tests positive, many docs will insist on a biopsy of the small intestine to confirm the diagnosis. If positive, then your son should be checked for thyroid levels, anemia and iron levels, and vitamin b12. anti-Gliadin antibodies should be done for a baseline level as these will need to be checked every 6-12 months for future follow-up/compliance with the gluten-free diet.

I recommend asking your doc to check with the University of Chicago Celiac Disease Program (773) 702-7593. This program offers assistance to doctors as well as to patients re: diagnosis and treatment of celiac disease.

As for the questions about your current pregnancy and whether you should be gluten-free now...I would definitely direct that question to the Univ. of Chicago also. They have the most up to date info...

Sara

[Guest PastorDave]

Sara,

Thank you so very much! It is very very helpful to have the number of the Univ. of Chicago to give to my doctor. He is very interested in celiacs, but lacks the knowledge, and lacks the time to do a full study. I will ask for/insist on scheduling testing for Jonathan, again thanks for the specifics. Jonathan might "just be small" (I am 4 foot 11 and usually weigh 115 pounds) but he looks more like his dad who is 5 foot 10 and only weights 130 pounds. Everybody always said David was "just small" until we insisted on testing after his mother was diagnosed.

Thanks again!

[tpineo]

I am wondering if anyone has any information on recommendations for a non celiac disease pregnant mom when one child in the family already has celiac disease? We have 2 kids (one with celiac disease, one without) and are thinking about a third.

1) First, should Mom be gluten-free during pregnancy?

2) Second, should Mom be gluten-free for breastfeeding?

2) Third, should the newborn be gluten-free for a year? longer? not be gluten-free and watch for symptoms?

I feel keeping the gluten away longer gives the newborn a better chance but I am wondering if there is any research to back this.

Any information is appreciated. Tania Greenville, PA

[lovegrov]

This is an area with varying opinions. One study suggested that delaying gluten beyond normal intoduction actually increases the chances of celiac. Another study indicated that children who continue to breastfeed past the introduction of gluten are less likely to get celiac, although no one knows whether that continues into later life.

There's a similar debate about eating gluten while breastfeeding.

I'm fairly certain, though, that the general advice is to introduce gluten at what would be a "normal" time, whenever that is (my youngest is 12 so I've forgotten these things).

richard

[hapi2bgf]

Hi,

I'm the celiac in our family, but we also have a child with a peanut allergy. I am 30 weeks pregnant. My OB is of little help regarding the entire Celiac issue. I just had to spend a long visit at my Gastro who I do like and trust very much to sort of all of my issues with regards to the pregnancy and what needs to happen or not.

My Gastro is under the opinion that you do not test a new born or very young child unless they are "faling to thrive" or showing other symptoms. My newborn would test positive for Celiacs because of me is the idea. I liked the idea of waiting until the child is having other blood tests done at an older age to discuss having the gene test or Celiac panel done on an otherwise healthy child just to know where you stand. My other child had the Celiac panel done twice right after I had the diagnoisis. She was elevated on one and normal on the other. The specialist said to go with the non-celiac until symptoms present.

(Christina - I would have your child blood tested. There is a numbing cream that your pediatrician should have. If not, you can order it through your pharmacist. It will make the blood work much less traumatic for you and the child.)

As for the nursing, as the celiac I have concerns here. My first ended up with double ear tubes, peanut allergy, and pencillian allergy. So nursing didn't do much to help out in the allergy category for her. My gastro is of the opinion that you need to do what works best for you the Mom, the baby, and the family. For me they recommend presumming that this next child does not have celiacs. The breast feeding didn't work too well with the first baby, so I think this one will be nursed and get supplimental bottles.

Best of luck on your pregnancy and delivery!

[Merika]

Hi,

Regarding the breastfeeding, there is a newish study out on celiac disease that shows the ONLY external variable in whether a person gets celiac disease is LENGTH OF EXCLUSIVE NURSING TIME, meaning the longer you exclusively breastfeed, the less likely your child will develop celiac.

So, nurse nurse nurse This won't prevent celiac, but it does increase your odds. Check out www.lalecheleague.org for lots of great info on breastfeeding and to find a group near you.

Good luck!

Merika

[MySuicidalTurtle]

I do not agree with that study by the reaon for it happening and how they select people to participate.

From everything I researched before it is that being breastfed can push back the onset of symptoms, and that's it.

[flboysmom]

Hmmm...that's interesting. I wonder how long they suggest to nurse? I breastfed both of my boys and although we haven't had them tested they are having a positive response to being gluten-free. When my second son had gluten a week ago, his stools were white and runny. The rash on his arms and legs tripled in size( layers of bumps), and his mood was severly affected. So we are pretty certain that he is gluten intolerant. He had breastmilk until he was nearly 10 months old and my husband is the one with celiac...not me. He is currently 2.5 years old and has shown symptoms since being introduced to solids at 6 months old.

[Merika]

Hi,

I don't think they make a recommendation for exact length of nursing because they don't know. They did find that the longer you *exclusively* nurse, the less likelihood of celiac. Unfortunately, it is difficult in the United States to find many mothers who nurse exclusively even up to 6 months. I bet, for example, that if you stopped nursing at 10 months, then you introduced formula or solids before 6 months. Am I right?

Also, it's not whether the mother has celiac, it's whether the baby carries the gene(s) for celiac. Apparently, 25% of the US population carries the gene for celiac - that's a lot! But only 1% of us actually get celiac.

hth,

Merika

(ex-sociologist and loves statistics and studies )