Strict Gluten Free But Still Elevated Antibodies

[elle's mom]

Hello, this is my first post so i will explain my situation:

My 4 y.o daughter has celiac disease (diagnosed via elevated ttg antibody and endoscopy). We have had her on a strict gluten-free diet since nov 07 (over a year and a half); we have repeated antibody testing twice and both times the antibody levels are still high. The first time was only after she'd been gluten-free for about 3 months, so we just thought maybe it hasn't been long enough yet. But now, we recently had another try come back high again. Her doctor suggests we must "keep a closer eye on her". We are VERY careful and I just cannot imagine that we are cross contaminating her. It is hard for me to know if she gets gluten because she has never been able to "tell" me if she feels any differently. When we first started her on gluten-free she became drastically more cheerful, happy etc. But she still periodically has her temper outbursts and becomes very difficult. She also does not always have typical diarrhea when she's exposed, so I cannot monitor her that way.

Well, I also have a 2 month old who I am nursing, who I have recently figured out is both gluten and dairy sensitive through my breastmilk. I have read that although gluten doesn't pass through breastmilk, gliadin DOES, so I am going gluten free until I'm done nursing. When I started gluten-free, her fussiness improved drastically, but then I ate a lot of ice cream and realized she is dairy sensitive too. But this whole dairy thing with my 2 month old, also has me wondering about my 4y.o. If gliadin passes through our breastmilk, maybe it gets into dairy products too............When we first started gluten-free she also stayed dairy free for the recommended 30 days, possibly helping her mood?

SO, I have a few questions, wondering if anyone has input:

How long should it take for you antibody levels to come back normal after starting gluten-free?

Could her dairy intake, even though she's GLUTEN free, still be causing the antibody levels to be high? Also, causing her mood to change at times maybe.

Does anyone know if they test dairy products for gluten even if the ingredients would not necessarily lead you to believe that it contained gluten?

[marthamom]

Hello, this is my first post so i will explain my situation:

My 4 y.o daughter has celiac disease (diagnosed via elevated ttg antibody and endoscopy). We have had her on a strict gluten-free diet since nov 07 (over a year and a half); we have repeated antibody testing twice and both times the antibody levels are still high. The first time was only after she'd been gluten-free for about 3 months, so we just thought maybe it hasn't been long enough yet. But now, we recently had another try come back high again. Her doctor suggests we must "keep a closer eye on her". We are VERY careful and I just cannot imagine that we are cross contaminating her. It is hard for me to know if she gets gluten because she has never been able to "tell" me if she feels any differently. When we first started her on gluten-free she became drastically more cheerful, happy etc. But she still periodically has her temper outbursts and becomes very difficult. She also does not always have typical diarrhea when she's exposed, so I cannot monitor her that way.

Well, I also have a 2 month old who I am nursing, who I have recently figured out is both gluten and dairy sensitive through my breastmilk. I have read that although gluten doesn't pass through breastmilk, gliadin DOES, so I am going gluten free until I'm done nursing. When I started gluten-free, her fussiness improved drastically, but then I ate a lot of ice cream and realized she is dairy sensitive too. But this whole dairy thing with my 2 month old, also has me wondering about my 4y.o. If gliadin passes through our breastmilk, maybe it gets into dairy products too............When we first started gluten-free she also stayed dairy free for the recommended 30 days, possibly helping her mood?

SO, I have a few questions, wondering if anyone has input:

How long should it take for you antibody levels to come back normal after starting gluten-free?

Could her dairy intake, even though she's GLUTEN free, still be causing the antibody levels to be high? Also, causing her mood to change at times maybe.

Does anyone know if they test dairy products for gluten even if the ingredients would not necessarily lead you to believe that it contained gluten?

Hello,

I'm sorry to hear about your daughter. I am certainly not an expert at all, but I just wanted to share with you that I have now been strictly gluten free since the beginning of September (after being diagnosed by blood test and endoscopy), and my antibodies are still elevated--I just got them tested a few weeks ago, and they are lower than when I was diagnosed but still not in the normal range. It's discouraging, but my doctor said that it can take some people up to a couple of years before the intestines heal and antibody levels get back to normal. Do you know what your daughter's level was both times she's been tested? Has it come down at all?

With regard to the dairy, I'm pretty sure that it wouldn't be causing the antibodies to stay elevated, even if your daughter has a lactose intolerance or a casein allergy, or just can't digest dairy because of the damage to her intestines. For what it's worth, the last time I saw my doctor, I asked her specifically whether there was anything else besides gluten that would trigger the autoimmune reaction (and therefore elevated antibodies), and she said no. But I'm obviously not a doctor, so I'm not 100% sure.

Has your daughter had a second endoscopy since her diagnosis? I'm anxious to get one done just to assess the degree of healing that (I hope) has taken place.

Sorry if this wasn't too helpful, but I do sympathize and know how frustrating this can be--and I can only imagine it's that much more so when it's your child.

Good luck!

[ang1e0251]

The dairy won't affect her antibody count but it certainly can affect her moods. I would give her another dairy free trial. You're doing that yourself anyway.

Can she get gluten in not very obvious ways? Is your pet food gluten-free? Is she around the food and the pets? What about craft supplies like Playdough or tempera paints? Have you had any drywall going into your house? Do you use gluten-free bath products? I read one poster write that her child was glutened by her husband's bath product? Does she eat many gluten-free prepared foods, those often have low levels of gluten and can affect sensitive persons.

Apart from that if her levels are reducing, even if slowly, I'd say you're making progress. Make sure she isn't sharing food when with family members or friends or at church, etc.

[elle's mom]

thank you so much for your insight; it is nice just to know someone else is struggling with the elevated antibodies. no, we have not gotten another endoscopy (i was hoping to never have to put her through that again). it was awful; of course her being such a young age made me paranoid about it.

[elle's mom]

now that you've both mentioned it, i do think the levels were LOWER, just not into the normal range. thank you for confirming the dairy would not trigger the antibody response if she were sensitive. we are doing a dairy free trial right now-it's only been 2 days so we'll see.