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precious831

Alternative Tests For Toddler

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Hi. I have celiac, my daughter will be 3 in a month and half and she's gluten-free as well for a yr now. Initially she did so great, she gained 2.5 lbs in 3 weeks. She hasn't gained much since then and still has multiple food allergies. She recently just came up positive for rice and I'm pretty desperate now. I mentioned the possibility of leaky gut to our pediatric GI and as expected she didn't even hear me out, she said not possible. My DD has not been gaining weight well and seems she gains and then loses it. She is so thin, has multiple food allergies and bruises easily. She's had a complete workup to see if she has any bleeding disorders but came up negative. She was tested because I have a blood disorder so the hematologist thought she might have it as well.

I was really praying/hoping that celiac was the answer for her because we can at least manage it through diet. Anyway have any of you had kids or you yourself tested for leaky gut(lactose/mannitol test)? If so how/where did you find a doctor to order it for you? I wanted to give my DD some glutamine but I read conflicting things about this so I'm not sure. I could sure use some too because I've been glutened almost every week this past month and not feeling so great.

Sorry this was long, my DD needs help. Thanks so much, I appreciate any advice you can offer.

Precious


Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).

Extremely allergic to shellfish, Aspirin & Ibuprofen

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Wow :( First off, hugs. I too am a food allergy Mom with a Celiac chaser ;)

We have done all the traditional testing so I don't have a ton of advice. If you suspect leaky gut, there is a subheading on this site for that. If you suspect that, how would it be treated? I would start there on your own if you need. I assume you have done probiotics and all that already, yes?

HUgs again and maybe the leaky gut people can help you out a little more?

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This might help you in dealing with your blankety-blank GI:

http://www.allergygrocer.com/blog/Celiac-Research-Common-Immune-Disorders/

It's about an article in Scientific American recently about recent research into celiac disease, and this is what is says, in a nutshell:

They are beginning to think that all auto-immune disorders have three things in common.

1.There needs to be a genetic issue involved - the gene that carries the flaw for the disorder.

2. There needs to be an environmental trigger that sets off the disease.

3. Auto-immune folks seem to have a gut that is more permeable than most.

That sounds like your little one. I wish I knew more about the test, but I might have something that could help at least a little bit in keeping your little one healthier, at least re: celiac disease.

My GI is considered really up to date on celiac disease - he's the go-to GI for celiacs in my area. He gave me lots of advice on what to do when I was diagnosed, but he also passed on information and trends that he's seeing in his celiac patients, even if this has not been studied formally yet. So, this information might help you, at least a bit.

1. He said that celiacs are more prone to developing food allergies, sensitivities, and issues.

2. He said that celiacs are more sensitive to additives, dyes, and preservatives. He recommends all his celiac patients try to avoid these three things in their diet completely.

3. He said that celiacs have more trouble with genetically modified foods, and are more likely to develop allergies to OTHER foods when eating GMO's (lab animals develop this problem, when fed certain GMO's, they develop allergies to different foods. soy, for example, makes them develop peanut allergies, it seems). If you buy organic, this means no genetically modified foods. This means for meats that are organic, the animals are not fed GMO grains that would stay in their cells and get into our own.

4. He said that some celiacs develop sensitivities or allergies to all the grass family for a while. All grains, sugarcane, and bamboo. Buckwheat, amaranth, and quinoa are not included in that. (oh, to avoid corn, if you choose to take the little one off of it, you might want to check a corn allergy site. This stuff is in everything all over the place, worse than gluten)

5. Some celiacs also seem to react to gluten-free oats and/or quinoa as though it's wheat, rye, or barley, so if those are in your little one's diet, that might still be causing an issue.

Also, another bit of information, there is a condition called fructose malabsorption that involves fruits, veggies, and grains causing problems. It is not inherited, but seems to be triggered. Currently, they think it might be triggered by gut problems, such as celiac disease or IBS, so it might be worth checking out on-line.

I was diagnosed celiac, and then my child came back positive, too. After going gluten free, she was actually feeling worse for a while and we couldn't figure out why. No good pediatric GI's where we are. But based on my GI's comments to me, I ended up avoiding the 8 major allergens and keeping a food log of her reactions and what she was fed. We dropped all the food allergies that existed in the family, too. Doing that, we discovered that she has problems with dairy, corn, and a few others. Some seem to be allergies, like kiwi. But some...they're not. They don't give hives, etc... But they seem to make her stomach hurt, affect her ability to absorb nutrients, etc...

Also, I feel the need to ask, based on your GI's lack of help and, it seems, lack of knowledge. How much information did you get on going gluten free? Do you feel like it was comprehensive? Do you think the little one might be getting any unintentional gluten? Has she been tested for vitamin deficiencies, too?

So sorry this is happening to you, but hope that you can find the answer soon for your little one.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Look into the dx FPIES, it's the rejection (allergy) of protiens in food groups.

We thought my son had it, but right now it's still looking like specifin food allergies for us. RICE, is a big on the FPIES group. New study from 2006

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This might help you in dealing with your blankety-blank GI:

http://www.allergygrocer.com/blog/Celiac-Research-Common-Immune-Disorders/

It's about an article in Scientific American recently about recent research into celiac disease, and this is what is says, in a nutshell:

They are beginning to think that all auto-immune disorders have three things in common.

1.There needs to be a genetic issue involved - the gene that carries the flaw for the disorder.

2. There needs to be an environmental trigger that sets off the disease.

3. Auto-immune folks seem to have a gut that is more permeable than most.

That sounds like your little one. I wish I knew more about the test, but I might have something that could help at least a little bit in keeping your little one healthier, at least re: celiac disease.

My GI is considered really up to date on celiac disease - he's the go-to GI for celiacs in my area. He gave me lots of advice on what to do when I was diagnosed, but he also passed on information and trends that he's seeing in his celiac patients, even if this has not been studied formally yet. So, this information might help you, at least a bit.

1. He said that celiacs are more prone to developing food allergies, sensitivities, and issues.

2. He said that celiacs are more sensitive to additives, dyes, and preservatives. He recommends all his celiac patients try to avoid these three things in their diet completely.

3. He said that celiacs have more trouble with genetically modified foods, and are more likely to develop allergies to OTHER foods when eating GMO's (lab animals develop this problem, when fed certain GMO's, they develop allergies to different foods. soy, for example, makes them develop peanut allergies, it seems). If you buy organic, this means no genetically modified foods. This means for meats that are organic, the animals are not fed GMO grains that would stay in their cells and get into our own.

4. He said that some celiacs develop sensitivities or allergies to all the grass family for a while. All grains, sugarcane, and bamboo. Buckwheat, amaranth, and quinoa are not included in that. (oh, to avoid corn, if you choose to take the little one off of it, you might want to check a corn allergy site. This stuff is in everything all over the place, worse than gluten)

5. Some celiacs also seem to react to gluten-free oats and/or quinoa as though it's wheat, rye, or barley, so if those are in your little one's diet, that might still be causing an issue.

Also, another bit of information, there is a condition called fructose malabsorption that involves fruits, veggies, and grains causing problems. It is not inherited, but seems to be triggered. Currently, they think it might be triggered by gut problems, such as celiac disease or IBS, so it might be worth checking out on-line.

I was diagnosed celiac, and then my child came back positive, too. After going gluten free, she was actually feeling worse for a while and we couldn't figure out why. No good pediatric GI's where we are. But based on my GI's comments to me, I ended up avoiding the 8 major allergens and keeping a food log of her reactions and what she was fed. We dropped all the food allergies that existed in the family, too. Doing that, we discovered that she has problems with dairy, corn, and a few others. Some seem to be allergies, like kiwi. But some...they're not. They don't give hives, etc... But they seem to make her stomach hurt, affect her ability to absorb nutrients, etc...

Also, I feel the need to ask, based on your GI's lack of help and, it seems, lack of knowledge. How much information did you get on going gluten free? Do you feel like it was comprehensive? Do you think the little one might be getting any unintentional gluten? Has she been tested for vitamin deficiencies, too?

So sorry this is happening to you, but hope that you can find the answer soon for your little one.

Thanks to the previous commenter btw.

Anyway, my dd is completely gluten-free, as much as I'm aware of. Even soaps, lotions and toothpaste. Her ped GI was not much help but I have done so much research so I guess you could say I was pretty much on my own with the gluten intolerance(hers) and with the food allergies, it's just that conventional drs haven't been much help. Would you mind sharing your doctor's name? He sounds like a good one, I need to go to one like that.

My whole family only eats organic everything, I am a foodie and definitely no GMO in my house. Not much processed foods at all, I make a lot from scratch. I just took off rice from DD's diet because she came up positive on the current SPT. She takes probiotics from Custom Probiotics, they are like the purest type of probiotics you can find in the market.

I thought about fructose malabsorption, read about it last yr but then I forgot, does an allergist diagnose that? Also she has not been checked for mineral deficiencies, just the iron that's it.

I keep a meticulous food diary for her and try my best to rotate her foods(rotation diet). It's hard because there's not much variety to rotate, she is allergic to pork, beef, chicken. Just found a place where they sell game meats and will get some tomorrow.

These are foods she avoids: pork, chicken, beef, banana, avocado, strawberries, fish(except Cod), rice

She's trialing these right now: eggs and corn. Will trial dairy and soy in a few weeks.

Thanks so much for the info fr your doctor.


Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).

Extremely allergic to shellfish, Aspirin & Ibuprofen

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in regard to your fructose malabsorption comment about who tests... I don't know if your pediatrician can order it or not, but our PED GI doc ordered my daughters. It is a hydrogen breath test and it is about 4 hours long. My daughter tested positive and I positively HATE this diet :blink: Keep your fingers crossed this is not it! (can you tell I hate it? lol)

oh, and this is the best piece of info out there that I could find that is the most detailed on what they can and cannot eat...

http://www.healthhype.com/nutrition-guide-for-fructose-malabsorption.html#comment-50659


Son officially diagnosed 3.18.10 with celiac biopsy results. age 12.

daughter, 10, diagnosed fructose intolerant 2009.

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Look into the dx FPIES, it's the rejection (allergy) of protiens in food groups.

We thought my son had it, but right now it's still looking like specifin food allergies for us. RICE, is a big on the FPIES group. New study from 2006

I researched that last yr but didn't seem like she has it. I'll look into it again. She doesn't vomit after eating grains.


Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).

Extremely allergic to shellfish, Aspirin & Ibuprofen

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