celiac disease? - Mothering Forums

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#1 of 11 Old 06-20-2009, 11:42 PM - Thread Starter
 
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This post is for a worried and confused friend regarding her son. This is her post on another discussion forum: any advice or insight would be appreciated. Thank you!

-----
Hi all, please help me.

My 17 months old has a wheat, milk and pork intolerance. We also
suspect he is allergic to soy, but haven't done a blood test to confirm
it.

Last December (he was almost a year old) he was confirmed to be
allergic to wheat and milk (blood test) and was found to be anemic. He
was prescribed an iron supplement, and put in a gluten-free/milk-free
diet. (he is still nursing).

At that point the doctor thought that he probably was not celiac since
is result did not suggested that dx:
anti-gliadine IgA weak positive (no number was given)
anti-transglutaminase IgA 0.6

A couple of weeks ago we repeated the blood tests. He is now also
allergic to pork, and his allergies to milk and wheat are still there.
(the intollerance to wheat seems to be improving, they when from 14 %
to 8 %) He is still anemic (mildly, Iron 18 mcg/dl -- hemoglobine 10.9 d/dL)

But the
anti-gliadine IgA negative
anti-transglutaminase IgA 4.8
is now positive.

Now the doctor thinks he probably has celiac disease.
The doctor refered us to an specialist who seemed very concerned.

So I am, of course, even if my son where to be dx with celiac disease, he has been in a
gluten free-milk free diet for half a year now and has showed no
improved. What are we doing so wrong with him ??

what can we do ??

He is so underweight (18.5 pounds at 17 months, almost 18. Exactly the same weight than in mid September, almost a year ago).

He is also sleeping a lot, far more than usual, during the past week or so.
thanks for reading so far.
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#2 of 11 Old 06-21-2009, 12:40 AM
 
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I have celiac. Eliminating gluten was not enough, I had to eliminate all grains. Within days the autoimmunity symptoms disappeared - returned immediately when I ingested even the *tiniest* amount of grain. Examples would be eating something with vinegar, citric acid, "natural spices":

I was so sick of accidentally contaminating myself I gave up all processed/packaged food. I believe other than seaweed and raw choco everything is a fresh meat or produce...

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#3 of 11 Old 06-21-2009, 01:10 AM
 
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Hi,

I have celiac disease. As far as I know it would be impossible for your friends son to test positive for anti-transglutaminase IgA unless he had been ingesting gluten. I suggest that she look into this further. www.celic.com has a great forum. I always think that that forum is to Celiac disease as this forum is to parenting.

Also, is she still eating gluten while nursing? It is a pretty big molecule but maybe it's getting through to him in her milk?

As far as I understand to get any kind of accuracy out of the blood tests for Celiac disease you need to be eating gluten for an extended period of time before testing or you may get false negatives.

I hope she finds something to help him soon. That sounds like a really scary situation.

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#4 of 11 Old 06-21-2009, 03:10 AM
 
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Quote:
Originally Posted by tomtemama View Post
Also, is she still eating gluten while nursing? It is a pretty big molecule but maybe it's getting through to him in her milk?
Gluten absolutely passes in breastmilk, so that would definitely be the first question to ask...

Next would be to look at other things celiacs often have trouble with (I know corn is on that list, not sure what else is). Allergy testing is far from foolproof, and seems to miss corn particularly often.

Good luck to your friend, I know it's really scary to have a little one that doesn't seem to be thriving.

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#5 of 11 Old 06-21-2009, 05:48 AM
 
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My ds has coeliacs (diagnosed at 2.5yrs). We went on a grain free diet at the beginning of this year due to another auto-immune condition (it is the GAPS diet which is to heal the gut) and I found for the *first* time that his bowel motions were actually normal (they did improve a lot just going GF though). So to me, there was more than just the gluten causing an issue. Apparently the treatment for celiacs way back before they discovered gluten as being the issue was to remove all grains, but somewhere along the lines just gluten ended up being targetted, but some believe that other grains also cause the same problems and I would believe this.

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#6 of 11 Old 06-21-2009, 07:52 AM
 
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Ditto others, I don't know how he could test pos w/o ingesting it. The dr should know that. If he did test positive and he is not eating gluten(and she is not ingesting it while nursing) than they don't have a clean diet, something is getting in there. We need some more info to figure out what is going on with the poor babe! I think a good healing diet might be a great place to start, but if gluten is still being consumed somehow than that would be the first place to look.

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#7 of 11 Old 06-21-2009, 01:08 PM
 
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She may not be eliminating wheat and gluten as well as she thinks if the test came back positive. There are so many hidden sources (vinegar, beer, oatmeal, caramel coloring, etc.). Gluten absolutely *does* pass through milk, so if she's nursing and eating it, the baby is too, most likely. Good luck to your friend. I'm glad she's going to see a specialist.
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#8 of 11 Old 06-21-2009, 05:12 PM - Thread Starter
 
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Thank you all for the replies. I gave her the link to this thread. She herself is following the same milk, soy and gluten-free diet. She suspects the problem is at the daycare. Her son stays home for the summer, and she is hoping he will improve.
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#9 of 11 Old 06-21-2009, 08:09 PM
 
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The other thing, could be playing with playdough and hands in mouth before being washed?

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#10 of 11 Old 06-22-2009, 07:43 AM
 
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THANKS, I am geekmoma's friend and this is my very first post on this community.

I am nursing my baby, and following a gluten free - diary free since last december, and very recently also a soy free and pork free diet. It is not easy and I have lost a lot of weight. In my case it is welcome, but no wonder the baby can not gain any weight.

Last August he was 8.5 Kg, last week 8.4 Kg ( 18.7 lb / 18.5 lb ). 9 months and no weight gain, he is 18 months as of today... And he is SO skinny. We took him to see a gastro specialist. He measured the width of his arm, just as doctors do to sick kids in the developing country. It really broke my heart. The doctor face was not a happy face.

I asked him about excluding pork from his diet (The baby was found to be borderline intollerant). The doctor said : he is doing so poorly that you should stop it too. The "so poorly" part really worried me.

We have been trying hard to follow an strict diet, but there are two possibilites for the contamination: First, his daycare. Second, a couple of trips where we ate a lot in restaurants. We now have a wo months vacation, I am hoping he will improve.

The doctor suggested to do a biopsia. He is waiting for the results of some testing (blood, perspiration). I was under the impression that this made no sense if he was in a gluten free diet, but again, there has been some contamination.

Thanks for reading so far, and for your answers,

Bellotas
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#11 of 11 Old 06-23-2009, 09:16 AM
 
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Welcome!

I think what I would do first off is try to figure out the source of contamination. Restuarants sound like a problem and I would talk to daycare as well, that needs to be figured out. Are they giving him unapproved snacks? Are the kids trading? Are they playing w/ playdoh or doing other craft activities w/ things like cheerios. Do they really understand the seriousness of this? At this point I would say as well that restuarant eating needs to be out.

I would double and triple check the homefront as well. Do any of your health and beauty products have gluten in them- shampoo often does. Are you using old nonstick pans? Cast iron pans? Old waffle irons? Cutting boards? Pasta strainers? The same toaster? Are rags being used frequently to clean up gluten messes and then used for other things? How much gluten is in the house? How much of an issue do you have w/ cross contamination in the house? How many other people are in the house? Can your whole house go gf? Or at least make sure that they only use certain dishes and certain counterspace? Is there gluten baking going on(flour tends to settle everywhere and is very had to contain)? any processed foods he eats you might want to check and double the label if it is not specifically labeled gf, perhaps call companies. Ditto all that w/ milk products as well.

I hope these questions don't come off as insulting at all, just trying to throw out every possibility I can think of here.

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