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Guest gf_mummy

New Member -- A Few Questions...

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Guest gf_mummy

I just wanted to introduce myself here, my name is Stephanie and I have two children Liam (almost 3) and Lily-Rose (almost 2). My ds Liam was DX'd as Celiac last December (by blood and biopsy). Before we went gluten-free he struggled with growth, diarrhea, GERD (which he still has), mouth sores....etc...etc. Before he went gluten-free he was a very quiet, passive child and didn't like to interact with anyone but myself or his father. By the time he was about 22 months he was severely ill, skinny like a rail.... it was awful. He began refusing to eat anything and when he did he would throw up. The doctor ran a few blood tests, but not for Celiac, said that I wasn't feeding him enough and that they wanted to place a feeding tube! I went for a second opinion, and at this time Liam was now 2 years old and weighed only 20lbs. The second doctor took us very seriously and this is where we eventually were DX'd with Celiac. We've been gluten-free now for almost a year and Liam has made vast improvements. He has gained weight (he weighs about 26.5 lbs) and his entire personality has changed. Hes no longer withdrawn and passive... he is a lot more outgoing, his hair is shiny and he is just perfect. He still struggles with GERD, but I think that is a condition by itself? Or is this related to Celiac??

My dd Lily-Rose began having similar symptoms, although not as bad and she tested positive for one antibody. We put her on a gluten-free diet and shes been doing good until now. She is not gaining very much weight now, and is considered "very small" for her age. Her GI thinks that she has a "leaky gut", but we won't know anything until after x-mas. Her stools are formed, but very pale, almost yellow, sometimes greyish. She has dark circles around her eyes, and is mildly anemic. We had blood taken and her antibodies are down, so its unlikely that she is being glutened. Does anyone have any ideas?? I am totally freaking out here!!

Sorry so long. Thank You in advance.

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Just really wanted to say hello and welcome to the boards!

GERD can be related to gluten, but it can also be a condition of some other things and a condition by itself. After a year gluten free, it may be something else though.

Don't know about your daughter, but I'm curious what test they do for leaky gut...is that the one where you drink sugary substance?

Sorry, not much help I'm afraid.

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Guest gf_mummy
Just really wanted to say hello and welcome to the boards!

GERD can be related to gluten, but it can also be a condition of some other things and a condition by itself. After a year gluten free, it may be something else though.

Don't know about your daughter, but I'm curious what test they do for leaky gut...is that the one where you drink sugary substance?

Sorry, not much help I'm afraid.

Hi, thanks for welcoming me :-) I'm not sure about a "leaky gut".... I think he is just using this term to mean that shes not absorbing nutrients properly... or.... something. He was very vague and quite unhelpful. We'll see after x-mas what tests they are going to do, or maybe its just an elimination diet. I'm starting to think that maybe its milk thats affecting her.

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Hi, thanks for welcoming me :-) I'm not sure about a "leaky gut".... I think he is just using this term to mean that shes not absorbing nutrients properly... or.... something. He was very vague and quite unhelpful. We'll see after x-mas what tests they are going to do, or maybe its just an elimination diet. I'm starting to think that maybe its milk thats affecting her.

It could be the dairy. I went gluten-free first, then had to cut out dair because of the casein (the protein in dairy as opposed to lactose which is the sugar) when I got my results back from Enterolab. Cutting out those two things took care of a lot of my major issues, but not all...I still have some smaller issues like diarrhea and dizziness which no one had been able to find the source of. So I'm on an elimination diet right now, and so far I'm finding it very hard to tell which foods bother me because I can't get to a healthy enough state to tell the difference, lol.

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hi and welcome - I am not very experienced as I am only relatively new to this board also but first and foremost its at least great that you have positive diagnosis for your children as a lot of the mothers on this board had to struggle with negative blood works and unhelpful doctors - including mysefl - finally diagnosing their children by themselves and seeing the results through dietary response. However, I must agree that dairy poses problems - it has been very hit and miss with my son in the effort to discover exactly what the problem is... but we know that gluten is a problem and that dairy is a problem and anything with high levels of fructose and sucrose seem to cause problems causing me to believe that he may also have malabsorption issues in his gut... apples cause problems (high fructose) and certain sugary antibiotics etc have caused problems.... we keep his sweets intake to a minimum... we dont even know if sugary drinks would cause hell because we have been to afraid to give him any. (he is four) he is very anemic looking and hasnt gained weight in a long time but now that we have finally embarked on the gluten free diet he is most definitely improving. I hope that you figure out exactly whats bothering your children...

best of luck with everything and I know that you will find help on this board. everyone here is wonderful and they have all helped me at different stages with problems... sometimes all one wants is a place to rant!! and there is always a shoulder to cry on here.

merry christmas everyone!!

Liz (ireland)

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I've seen problems with dairy cause stools the color you are describing. My grandson is very pale with the dark rings around his eyes, but his doc won't do any tests until spring. He says the boy is growing well and too active to be very sick. Leaky gut is when the intestines let large particles of food into the bloodstream. This causes the immune system to go haywire, as it is trying to cope with particulates that should not be there. I would start with Lily-Rose by cutting out dairy and adding a multivitamin.

By the way, welcome to the board! I'm Dessa, and it is very nice to meet you!


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

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Guest gf_mummy
I've seen problems with dairy cause stools the color you are describing. My grandson is very pale with the dark rings around his eyes, but his doc won't do any tests until spring. He says the boy is growing well and too active to be very sick. Leaky gut is when the intestines let large particles of food into the bloodstream. This causes the immune system to go haywire, as it is trying to cope with particulates that should not be there. I would start with Lily-Rose by cutting out dairy and adding a multivitamin.

By the way, welcome to the board! I'm Dessa, and it is very nice to meet you!

Thank you everyone who has welcomed me!

We are (attempting) to rid her of milk... its hard because that is all she wants... milk milk milk. She LOVES it. I tried to get her to drink soy and rice but she spat it out. I've been giving her a multi vitamin, but she is still mildly anemic.

FWIW my DH is severely lactose intolerant, I don't know if that is genetic and I don't think that Lactose intolerance would cause malabsorption... or maybe I'm wrong. Now I am rambling. We are just going to try and get through the holidays and then focus on her diatary issues!!

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Stephanie, dark rings under the eyes always indicate food allergies/intolerances. My naturopathic doctor calls them 'allergic shiners'. So, if your daughter still has those, despite being gluten-free, that means she must be intolerant to something else besides gluten.

I say dairy is the likely suspect. Especially because she likes it so much. Allergists have been saying for years, that you usually crave what you're most allergic to. Lily-Rose appears to be addicted to dairy, bad sign.

Try giving her almond milk. I think soy and rice milk taste awful myself, but I like almond milk. Or don't bother with a milk substitute (she doesn't need milk), give her water and some juice instead.

By the way, celiac disease causes leaky gut, and so can dairy and soy. Dairy and soy can also cause villious atrophy.

GERD can also be a symptom of celiac disease, as well as dairy intolerance, and other intolerances.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I agree with the previous posts. Just to be safe double check all of the hygeine products. Lipgloss, shampoo, skin lotion, and even deodorant. Having yooung kids your skin lotion having gluten in it can be an issue. Are there any cross-contamination items in the kitchen?

L.


Michigan

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Thank you everyone who has welcomed me!

We are (attempting) to rid her of milk... its hard because that is all she wants... milk milk milk. She LOVES it. I tried to get her to drink soy and rice but she spat it out. I've been giving her a multi vitamin, but she is still mildly anemic.

FWIW my DH is severely lactose intolerant, I don't know if that is genetic and I don't think that Lactose intolerance would cause malabsorption... or maybe I'm wrong. Now I am rambling. We are just going to try and get through the holidays and then focus on her diatary issues!!

I agree as well about the dairy. If you run a search for Dr. Oski (a pediatrician), you'll find articles stating that over 50% of all iron-deficiency anemia in this country is directly caused by dairy consumption. Many people are intolerant and do not know it.

We switched to rice milk. The Pacific brand is gluten-free and has a very similar texture to real milk (the flavor isn't all that bad either). The best flavored rice milk we've tried is the Whole Foods Market brand 365....but it's not labelled gluten-free (yet is on the store's gluten-free list). When I started my dd on rice milk, I began by making her smoothies with it and let her get used to the flavor. I also mixed in coconut milk or almond milk to boost the fat and protein content. Rice Dreams has several varieties of ice cream available as well.

Leaky gut can be caused by gluten, dairy and soy...along with too many antibiotics which disrupt the balance of intestinal flora. You may want to look into supplementing with probiotics (Metagenics Ultra Flora Plus DF is a great pharmaceutical grade one). It would also help to supplement with a multi-vitamin and a DHA or omega supplement. This would help with leaky gut as well as the severity of reactions.

My dd's stools also turn yellow if she is exposed to dairy. Eggs and soy give us an unnaturally dark brown stool that is soft and greasy. And only on this forum would it be acceptable to go into so much detail on stools...... :lol::lol::lol: I really do think that dairy is the problem.

I hope that everything goes well and that dairy is the only culprit behind these lingering issues. Being dairy and gluten-free can be a bit of a pain (mostly if going out to eat...EVER) but it is quite managable. And there are some decent alternatives out there. So take heart. I've put my family on a dairy, soy and gluten-free diet (dd and I also avoid eggs) and my dh has felt so much better that he now avoids many of these foods away from home. The first food he avoids is dairy as that made the most difference in how he felt. You may find some benefit to these initial sacrifices. ;)


Vicky

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Guest Villanfam
It could be the dairy. I went gluten-free first, then had to cut out dair because of the casein (the protein in dairy as opposed to lactose which is the sugar) when I got my results back from Enterolab. Cutting out those two things took care of a lot of my major issues, but not all...I still have some smaller issues like diarrhea and dizziness which no one had been able to find the source of. So I'm on an elimination diet right now, and so far I'm finding it very hard to tell which foods bother me because I can't get to a healthy enough state to tell the difference, lol.

Check out this thread http://www.glutenfreeforum.com/index.php?s...c=26874&hl=, the dizziness could be a symptom of "neurological celiac disease"

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it could be that she is just drinking TOO much milk. one of my boys used to get the circles under his eyes and complain about "the bubble" in his throat. we took him off of drinking milk (he still ate cheese and ice cream) and the circles went away and so did the "bubble" complaints. my second son was on a bottle way too long, and since i wasn't well at the time, it was easy to just give him the bottle when he wanted it, rather than get him something else. when he was drinking lots and lots of milk, his BMs were pale and slightly yellow.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Please look up the symptoms for eosinophilic esophagitis. It mimics GERD, but does not respond to medication. Other symptoms include failure to thrive, diahrrea, vomiting, etc. Most people diagnosed were originally seen for possible celiac and/or GERD.

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Stephanie, dark rings under the eyes always indicate food allergies/intolerances. My naturopathic doctor calls them 'allergic shiners'.

WOW...I did not know that but it is VERY informative! And definately true in our case!!


Mom to:

Riley 8 -Tourettes, OCD, ADHD

Cooper 6 -Celiac dx'ed Dec. 2005

Jake 4- Resolved Verbal Apraxia, Coordination disorder and Sensory Integration Disorder

Sutton 3- Speech issues and sensory integration disorder

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