Please Explain This

[mom-to-claire]

I probably should post this in the testing section but thought you could help me out as well. My daughter is 11 months and has been on a gluten free diet for about 6 weeks. It seems to be making a big difference in her mood (although not today, she's totally grouchy) and her weight gain. I am not gluten free and I am still breastfeeding about 3 times a day. I am also not being a fanatic about crumbs etc. I have a 2.5 year old who is not gluten free nor are we (parents).

I have read several posts that suggest that I SHOULD be a fanatic because if she DOES have celiac, even a crumb can be doing damage as much as eating an entire slice of bread. I understand this but have not been as diligent as I should be. We do not know if she has celiac but might have her tested at a later date. Her symptoms of being glutened are lots of vomiting and lethargy and then crankiness/clinginess for several days. She has had none of that since starting her diet even with my BF and not being fanatical.

If we decide to get her tested (biopsy) later on down the road, I've read that she will have to have gluten for 6-8 weeks before the biopsy can be done...OK so explain this to me..why would this be if she is possibly getting small amounts of gluten from crumbs, contamination etc. that is apparently doing as much damage as if she was getting large amounts. I don't get the inconsistency here. Is there something I'm missing??

[girlfromclare]

I probably should post this in the testing section but thought you could help me out as well. My daughter is 11 months and has been on a gluten free diet for about 6 weeks. It seems to be making a big difference in her mood (although not today, she's totally grouchy) and her weight gain. I am not gluten free and I am still breastfeeding about 3 times a day. I am also not being a fanatic about crumbs etc. I have a 2.5 year old who is not gluten free nor are we (parents).

I have read several posts that suggest that I SHOULD be a fanatic because if she DOES have celiac, even a crumb can be doing damage as much as eating an entire slice of bread. I understand this but have not been as diligent as I should be. We do not know if she has celiac but might have her tested at a later date. Her symptoms of being glutened are lots of vomiting and lethargy and then crankiness/clinginess for several days. She has had none of that since starting her diet even with my BF and not being fanatical.

If we decide to get her tested (biopsy) later on down the road, I've read that she will have to have gluten for 6-8 weeks before the biopsy can be done...OK so explain this to me..why would this be if she is possibly getting small amounts of gluten from crumbs, contamination etc. that is apparently doing as much damage as if she was getting large amounts. I don't get the inconsistency here. Is there something I'm missing??

Hi mom to claire.... im not an expert as we are only adapting to the diet ourselves and seeing great results too. however I noticed that you mentioned that even though you arent being fanatical about crumbs etc, that you are still seeing results... however you also mentioned that your baby was totally grouchy today and that could be because you are not worrying about the crumbs. thats what we see on and off when we make slip ups in the diet... our son gets really really grouchy to the point of being in real distress. So without knowing your situation at all, I reckon that perhaps you should try a 100% gluten-free diet because from what I have learned, yes, even tiny particles can cause problems. how my gp described it was that even tiny particles of the offending food can cause a whole chain reaction of problems in the intestine...

however there are moms with much more experience than me on this board and they will no doubt reply soon with plenty of detailed advice. I do know however that if you want to get tests done in the future, blood work or biopsy, that your baby will have to be eating gluten... the reason being that once you remove gluten from the diet, the villi in the intestine start to heal themselves and thus any damage that it had been doing might not be apparent in testing... therefore one needs to be eating gluten unfortunatley for the damage to be evident during testing. Yes small amounts of gluten, crumbs etc, can cause damage in the form of upsets and sickness in the person but crumbs alone would probably not be enough to do sufficient damage to the villi to be evident during testing... does that make any sense???

I wish you the best of luck and the other moms are bound to be of more help than me.. good luck

liz ireland

[happygirl]

Couple things:

celiac is a patchy disease. the small intestine is like 22 feet long. to eat a tiny amount of gluten and biopsy is really like a needle/haystack. even eating normal amounts of gluten, all celiac experts admit that they can miss it.

plus, ingesting gluten to a celiac is setting off the autoimmune system. the reason we go gluten free is to stop turning "on" the switch. so, yes, even if a crumb versus a lot of gluten goes in our system and different amounts of damage occurs, the switch is still turned ON.

many peds now do not say that parents need to reintroduce gluten to test, since testing *can* be unreliable and making children so sick and miserable for so long is not worth it.

(i had + bloodwork, negative biopsy because my doctor told me to go gluten-free for 5 weeks before my biopsy, and yet the dietary response was enough that no one cares what the reason was---gluten was bad for me.)

hope this helps, a bit!

[FeedIndy]

We noticed significant results with my DD within a few days. After a month or so it sort of hit a plateau. That was when I started reading about breastfeeding and celiac. I went gluten free and she started improving again right away! Now we seem to have hit another wall so I am being more strict about crumbs. In fact, I've given my family until the end of the year to get it under control or we all go gluten free! (though I'm seeing a lot of signs that indicate it would be beneficial for the girls to do so anyway.)

My point is that yes she got better, but if you start doing the other things necessary to keep her completey gluten free I think you'll be surprised to see even more results!

[Sage'sMommy]

My daughter's newly diagnosed but I thought you might get some use out of what her doc did. While we were waiting on the appointment for the biopsy we knew we still had to give her gluten but we really hated to since the blood work said she was. Well the doctor said keep a journal. For two days be a fanatic about gluten make sure she doesn't get any, and that you don't give her any threw the breast milk. Make sure you write down her meals. After that feed her two meals gluten free, on meal with gluten. Write down the meals along with anything you notice also write when she has a bowel movement and what it's like. When we showed up with the journal we all knew she had Celiacs and to what extent. Mine is really sensitive but your's might not be. But your doctors will have a document to study and the boipsy will just be a preliminary. Good Luck!

[Kibbie]

I probably should post this in the testing section but thought you could help me out as well. My daughter is 11 months and has been on a gluten free diet for about 6 weeks. It seems to be making a big difference in her mood (although not today, she's totally grouchy) and her weight gain. I am not gluten free and I am still breastfeeding about 3 times a day. I am also not being a fanatic about crumbs etc. I have a 2.5 year old who is not gluten free nor are we (parents).

I have read several posts that suggest that I SHOULD be a fanatic because if she DOES have celiac, even a crumb can be doing damage as much as eating an entire slice of bread. I understand this but have not been as diligent as I should be. We do not know if she has celiac but might have her tested at a later date. Her symptoms of being glutened are lots of vomiting and lethargy and then crankiness/clinginess for several days. She has had none of that since starting her diet even with my BF and not being fanatical.

If we decide to get her tested (biopsy) later on down the road, I've read that she will have to have gluten for 6-8 weeks before the biopsy can be done...OK so explain this to me..why would this be if she is possibly getting small amounts of gluten from crumbs, contamination etc. that is apparently doing as much damage as if she was getting large amounts. I don't get the inconsistency here. Is there something I'm missing??

Small amounts do the same amount of damage as large amounts. Kids however recover very quickly when they go gluten free (my daughter was completely symptom free after 3 days on the diet).

Before her biopsy we were told to go gluten light... I fed her 1 saltine cracker a day for 2 weeks and everything else was gluten free. She still had symptoms (lethargy, crankiness, and vomiting plus she started loosing weight and gaining the Celiac Belly)

So if you go gluten free your daughter's body could heal its self quickly and then it would take 6-8 weeks to do enough damage for a positive biopsy or bloodwork. Remember the antibodies have to build up in the system to be detected by a test, and the damage has to be done to the intestine for it to be detected.

[mom-to-claire]

We noticed significant results with my DD within a few days. After a month or so it sort of hit a plateau. That was when I started reading about breastfeeding and celiac. I went gluten free and she started improving again right away! Now we seem to have hit another wall so I am being more strict about crumbs. In fact, I've given my family until the end of the year to get it under control or we all go gluten free! (though I'm seeing a lot of signs that indicate it would be beneficial for the girls to do so anyway.)

My point is that yes she got better, but if you start doing the other things necessary to keep her completey gluten free I think you'll be surprised to see even more results!

Well after some thought, I'm trying to be gluten-free as well. It has been about 24 hours and I can't believe how hard it is! LOL! I have to do some more research on what exactly I CAN have so I don't feel like I'm depriving myself!

[FeedIndy]

Good luck to you! It wasn't easy at first, but I found that cooking gluten free meals was much easier than trying to find good gluten free quick lunches so I started over-cooking at night so I could eat during the day. Also, fresh fruit & veggies are always a safe bet. I snacked on potato chips and popcorn a lot, which helped.