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sadiesmom

21 Month Old "maybe?" Diagnosed With Celiac

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Hello,

I know you all get tons of questions from new people and you have been so kind. I am so glad I happened across this board because I am really confused and scared.

My daughter Sadie is 21 months old. She was 6pounds 13 ouces at birth and gained very well within the first half of her life - but then slowed. I breastfeed her and still do - even at 21 months. She has a good appetite - but only weighs 20 pounds which puts her well below the charts. Our doctor - has ran CAT scans and some blood to see what might be keeping her small. This month she ran more blood and the nurse called me yesterday to say that Sadie's antibodies came back elevated. Something about IgG and that the would like to see an 11 - but Sadie was a 40. They thought celiac sprue and recommended a ped gastro. So we have the appointment for Nov 28 - but in the meantime I am freaking out.

Having read through some of the symptoms - Sadie has exhibited a couple. She is smaller than expected, and her stools not solid. I always thought it was the breastfeeding - although celiac was always in the back of my mind. She also seems to pass things (chunks of fruit or veggies) REALLY quickly. I know being a toddler she might still have undigested bits - but these shoot out in about 2 hours. She is a reasonably happy baby and developmentally she is above target in most things. Which is why we figured she was just small. She does have a lot of trouble sleeping. I feel absolutely like the worst mother on earth that she might be uncomfortable or hurting all this time.

My questions are these:

Does what the nurse told me on the phone pretty much identify celiac? Is it possible she will have to have a biopsy as well?

Is breastfeeding still ok? I am guessing I will need to cut out gluten if she does. I know many people wean at 1 year old - but she just didn't want to and she still nurses alot.

Our appointment is at the end of this month - in the meantime should I continue with her normal diet. I don't want to do anything to mess up further testing - but I don't want to be hurting her or causing more damage?

Thank you so much for reading this. I know we will be alright if it turns out to be celiac - I am just scared and don't like being in limbo.

Amy

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My questions are these:

Does what the nurse told me on the phone pretty much identify celiac? Is it possible she will have to have a biopsy as well?

Is breastfeeding still ok? I am guessing I will need to cut out gluten if she does. I know many people wean at 1 year old - but she just didn't want to and she still nurses alot.

Our appointment is at the end of this month - in the meantime should I continue with her normal diet. I don't want to do anything to mess up further testing - but I don't want to be hurting her or causing more damage?

My daughter's only elevated level was the IgG. Also, under 11 is normal - my daughter's was 72. An endoscopy came back negative for villi damage, but her intestines were inflamed, ulcerated, red - so a gluten free diet was highly suggested.

You can still breastfeed, as long as you remove ALL gluten from your diet. It does pass, and it will get into her system and continue to do damage (if she is Celiac) if you continue eating it.

The sad thing is... to get accurate results through blood and biopsy, gluten must be ingested on a continual basis. It's a catch 22, you have to feed your child that makes her sick in order to get a diagnosis to make her healthy. There are strong opinions for both sides.

I'm sure you'll get more definitive answers on how much gluten is enough to keep it in the system, but since the little ones, especially, heal quickly.... if you removed all gluten now, by the end of the month you could very well have a clear scope.

This is SUCH a difficult situation to be put in. As a parent, you only want the best for your child. So, how does one justify continuing a gluten filled diet KNOWING that it could be the problem?? I don't have the answer to that question. I just want to wish you the best, and hope that you get some answers, soon!


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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My questions are these:

Does what the nurse told me on the phone pretty much identify celiac? Is it possible she will have to have a biopsy as well?

Is breastfeeding still ok? I am guessing I will need to cut out gluten if she does. I know many people wean at 1 year old - but she just didn't want to and she still nurses alot.

Our appointment is at the end of this month - in the meantime should I continue with her normal diet. I don't want to do anything to mess up further testing - but I don't want to be hurting her or causing more damage?

Thank you so much for reading this. I know we will be alright if it turns out to be celiac - I am just scared and don't like being in limbo.

Amy

Welcome, Amy!

It is so good that you've found out now that your daughter may have celiac disease. It means that it has been caught early, and just with a dietary change, your daughter will grow up healthy. I would suspect that the GI will want your daughter to continue with the "normal" gluten-filled diet, but why not call their office and confirm?

It's great that you're still breastfeeding! Consider that your daughter has been getting the best possible nutrition through your breastmilk...especially since her body hasn't been digesting and getting all the nutrition it needs through other foods...your breastmilk has been providing many of the necessary nutrients, because it is easy to digest and also provides immune benefits even at this age. Do modify your own diet and keep breastfeeding! It will continue to help, especially as your figure out diagnosis, and make the transition to eliminating gluten from her diet.

Michelle

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I so very much agree with Michelle! It is very good to learn about celiac early. I am glad I saw this post. I actually came on here to vent my frustration at the recent realization my nearly 12 month old son is likely celiac (just like his Dad and sister). This post reminded that we are lucky that my little guy doesn't have to go through what his Dad and sister went through because we can recognize it.

BTW, I did (obviously) try to keep him gluten-free at this young age. Sadly, ours is not a situation where Dad or I can stay home (no further discussions there). It seems he got ahold of some Cheerio bits that other babies dropped out of the high chairs. Day Care most apologetic, and trying harder. I may have to find alternative arrangements, however, if they are unable to ensure that he can't get dropped crumbs.

Anyway, Amy, keep breastfeeding. Good luck!

Welcome, Amy!

It is so good that you've found out now that your daughter may have celiac disease. It means that it has been caught early, and just with a dietary change, your daughter will grow up healthy. I would suspect that the GI will want your daughter to continue with the "normal" gluten-filled diet, but why not call their office and confirm?

It's great that you're still breastfeeding! Consider that your daughter has been getting the best possible nutrition through your breastmilk...especially since her body hasn't been digesting and getting all the nutrition it needs through other foods...your breastmilk has been providing many of the necessary nutrients, because it is easy to digest and also provides immune benefits even at this age. Do modify your own diet and keep breastfeeding! It will continue to help, especially as your figure out diagnosis, and make the transition to eliminating gluten from her diet.

Michelle

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"Does what the nurse told me on the phone pretty much identify celiac?" My Dd (who is was 19 months when diagnosed.. and is not 20 months) Iga's were a 73. We did the biopsy and it came back celiac.

"Is it possible she will have to have a biopsy as well?" That is completely up to you... we chose to do it for a number of reason... many people choose not too.... both are successful on a gluten free diet.

Is breastfeeding still ok? Breast feeding is still okay... you will need to go gluten free according to my pediatric GI Dr. You know that the World Health organization suggests that all women breast feed their children till at least the age of 2! If you are okay with it keep it up! Its good for her!

Our appointment is at the end of this month - in the meantime should I continue with her normal diet. I didn't keep my DD on a Gluten full diet... but i did make sure she had at least a slice of bread a day so that she had gluten in her diet and system.

Feel free to pm me if you need some good gluten free toddler ideas! I have a lot! :)

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Thank you all so much. This has been so overwhelming and coming on for a long time. I had read about celiac disease and it was always in the back of my mind as that could be what was wrong with her slow weight gain and really odd bowel movements. You are so encouraging - and I am so impressed by the wealth of information on this board. Every chance I get I have written down foods that I see you mention as okay or not okay. It will take me weeks to pour through all the info - but Sadie is worth it.

Also - thanks for the support on breastfeeding. Being 21 months - I have gotten some flack from our DR and even the Lactation consultant. The attitude is like "well it's okay to keep going - but she is old enough to stop". And of course she can stop anytime she wants. I have actually fed her on demand since her birth. When everyone else was reporting that their toddlers were only nursing at night or in the morning. Sadie would and still will nurse a couple of times a day on many occasions. Now - I am wondering if she needed it and if she might have had much more trouble with her weight and development if I had weaned her. I guess she knew what was best for her. So we'll keep going for now. And I really appreciate your support because I undertand that many people think it odd to still be nursing a toddler.

I guess I can take a deep breath now. I have whole list of questions to ask at her doctors appointment. I am so glad to have found this site. I hope to get a better handle on things in the coming months. Thank you so much!

Amy

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[

Hi Amy- I was reading your post and we are in such similar situations! As I read through I was amazed at the similarities! My daughter is 20 mos and we just got test tesults today....waiting for more info from doc. We are also scheduling an appt. with ped. gi later this month. I am so worried and scared for my daughter, we just want answers now! Madie's IgG level was 21, and they told me the normal was 0-9. Did they test her IgA level? My dd's lvel was at 1 (normal) but dr. seemed to think it was low just because of her age and not having enough time to produce large amts of the anitibody. We are so confused about what to do! Hang in there, and know that you are not alone! I was glad when I read your post becuase I feel like there is someone out there that can understand what we are going through!

Amy

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Amy,

Don't feel bad about nursing still. I nursed my first 2 for 2 years and 10 months and hope to continue that long with my youngest. I demand fed my oldest and they were still nursing 6 times a day at 2 years. My youngest only nurses 5-6 times a day since he was born and he sleeps through the night and has for quite awhile. He is also the only one we have used a pacifier with, although there are times he just likes to hold onto it. :)

As hard as it is, keep the gluten in her diet until the biospy. The 28th will be here faster than you know it. After her test I would suggest both of you go gluten free. I had gone gluten very lite due to ELISA testing in March. I got tested because of my baby's eczema. It almost cleared up with gluten lite and soy free. Going gluten free is what cleared him up the rest of the way. I didn't do regular testing because of being gluten very lite for 1 1/2 months so I did enterolab. If I had known before hand I could have gotten tested through the conventional route, but I'm satisfied with the results I got.

BTW Welcome. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Also - thanks for the support on breastfeeding. Being 21 months - I have gotten some flack from our DR and even the Lactation consultant. The attitude is like "well it's okay to keep going - but she is old enough to stop". And of course she can stop anytime she wants. I have actually fed her on demand since her birth. When everyone else was reporting that their toddlers were only nursing at night or in the morning. Sadie would and still will nurse a couple of times a day on many occasions. Now - I am wondering if she needed it and if she might have had much more trouble with her weight and development if I had weaned her. I guess she knew what was best for her. So we'll keep going for now. And I really appreciate your support because I undertand that many people think it odd to still be nursing a toddler.

I can understand a Dr not understanding all the benefits of extended breastfeeding, because they really aren't taught much about it, but shame on the lacation consultant for not being supportive! No one has the right to make you feel uncomfortable about the breastfeeding relationship between you and your daughter, because it is nobody's business but yours. Even beyond 2 years of age there are health benefits in breastfeeding. I encourage you to keep going as long as it feels like it's the right thing for both you and your daughter.

Michelle

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