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celiac disease*Update

Posted by on Feb. 14, 2013 at 9:22 AM
  • 31 Replies

After finally getting to see the nutritionist abouty weight amd what i thought was just lactose intolerance she believes its also celiac disease and put me on a gluten free diet. I have zero energy and so does Gavin and she thinks this is because my body isn't getting to take in nutrients muchles pass them to ds. I stay sick and in pain to the point of bleeding at times and unable to sit. His daiper count is also way down. Anyone have or dealt with this? I'm working on finding a doctor to get the blood test.

 

*Update

I stopped eating gluten and feel so much better! Better than that Gavin actually poo's normal now :) It seems to have been the cause of more problems than we thought...

 

by on Feb. 14, 2013 at 9:22 AM
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eema.gray
by on Feb. 14, 2013 at 9:48 AM

What are you eating in place of gluten?  Some people have a tendency to basically stop eating carbs completely when they go gluten free, which can cause fatigue and lack of energy.  Remember that the carbohydrate category includes fruit and vegetable as well as non glutenous grains.  Also keep in mind that with women particularly, a lack of starchy carbohydrates can severely impact thyroid function so you need to make sure you're getting starchy stuff in there somewhere.

Every fruit and veg on the planet is safe to eat.  For starchy, enjoy potatoes, sweet, white, and yams, a few times a week.  

Beans, lentils, split peas are all gluten free.

For grain, cook with corn, rice, buckwheat, quinoa, teff, millet, oats (make sure they're marked gluten free to avoid contaimination from wheat processed on the same equipment).

Are you drinking enough liquids?  Diaper count usually has more to do with hydration than with food intake.

Could you have been dealing with oversupply prior to going gluten free?  When I went GF, my supply "went down" but that was probably due to inflammation in the mammary tissue.  Instead of oversupply, I found I had a completely normal, exactly what one baby needs supply rather than being able to feed an entire NICU.

Has baby been looked at for tongue ties, including sneaky posterior tie?  Ties are far more common sources of weight problems in babies than food issues because your body processes food and nutrients so thoroughly before they get to your milk supply.

robbinsroost
by Member on Feb. 14, 2013 at 9:57 AM
1 mom liked this

 I would continue to consume gluten until you can be tested. If you stop eating gluten it can give you a false negative on the test. The blood test is not very reliable and I suggest you get a biopsy to confirm the diagnoses.I have celiac and have nursed 2 kids before diagnoses and 2 after. It never affected my nursing.

Are you lactose free or dairy free? It is more common for a baby to react to protien in milk than lactose.

You may want to do a full elimination diet and see if that helps.

victoriangavin
by on Feb. 14, 2013 at 10:24 AM
I do lactose free millk and keep lactase supplements on hand for cheese and anything else that could have lactose in it. I still get sick from something else and we're trying to pinpoint exactly what it is. I have had diaharea now for 5 months. A lip tie couldn't be a problem because I switched to pumping and giving cold bottles since everytime he nurses he throws up atlaat 5 minutes after and it smells like soured milk, my milk is too hot for his belly and he hasn't dobe this since i put him on refridgerater cold bottles. I just found out about the gluten thing yesterday and am still trying to figure it out
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Junebaby18
by Nannerz on Feb. 14, 2013 at 10:35 AM
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Quoting victoriangavin:

I do lactose free millk and keep lactase supplements on hand for cheese and anything else that could have lactose in it. I still get sick from something else and we're trying to pinpoint exactly what it is. I have had diaharea now for 5 months. A lip tie couldn't be a problem because I switched to pumping and giving cold bottles since everytime he nurses he throws up atlaat 5 minutes after and it smells like soured milk, my milk is too hot for his belly and he hasn't dobe this since i put him on refridgerater cold bottles. I just found out about the gluten thing yesterday and am still trying to figure it out


How can your milk be "too hot for his belly"? Body temp milk should be what is good for him, not too hot. I'm confused. Cold milk from the fridge is ok to have too as long as he takes it, depending on the age.

How old is he now and how many diapers does he use per any 24 hour period?
victoriangavin
by on Feb. 14, 2013 at 10:46 AM
Idk, when i hold a bottle of fresh pumped milk it's as hot as my coffee, he constantly threw up my milk and it looked like milk that had sat out for a week and curdled. When I got sick and had to give him bottles i started out with room temp and worked him up to cold and he stopped throwing up. For a long time I refused to do this because i thought it couldn't be too hot and insted changed my diet. Cold bottles is the only thing that fixed it... He's 5 months and is only going thru 5 daipers a day now... I drink fluids constantly but stay dehydrated because of the diarea. Sorry never been good at spelling and I try hard to get better
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eema.gray
by on Feb. 14, 2013 at 10:57 AM

Five-ish diapers a day sounds about right for a five month old.  :-)  

Have you posted his weight history?  Babies tend to slow their weight gain over time.

The cold vs hot bottles could also be a sensory issue.  Along with finding someone to really take care of you and the baby, you might want to consider having early intervention evaluate Gavin for feeding issues.  It's a free service, in your home and if your baby qualifies for therapy, he will receive it free of charge, at home.  The best thing that happens is they say he's perfect, don't change a thing; worst case they say he's having a significant enough problem feeding to qualify him for feeding/speech therapy.  It's one more thing you can do to make sure he is healthy and well.


Quoting victoriangavin:

Idk, when i hold a bottle of fresh pumped milk it's as hot as my coffee, he constantly threw up my milk and it looked like milk that had sat out for a week and curdled. When I got sick and had to give him bottles i started out with room temp and worked him up to cold and he stopped throwing up. For a long time I refused to do this because i thought it couldn't be too hot and insted changed my diet. Cold bottles is the only thing that fixed it... He's 5 months and is only going thru 5 daipers a day now... I drink fluids constantly but stay dehydrated because of the diarea. Sorry never been good at spelling and I try hard to get better



"I am only one, but I am still one; I cannot do everything, but still I can do something; and because I cannot do everything I will not refuse to do the something that I can do." ~~ Edward Everett Hale 1822-1909
victoriangavin
by on Feb. 14, 2013 at 11:01 AM
I'll have to check into that :) he's 5 months and is a solid almost 18lbs with no fat rolls


Quoting eema.gray:

Five-ish diapers a day sounds about right for a five month old.  :-)  

Have you posted his weight history?  Babies tend to slow their weight gain over time.

The cold vs hot bottles could also be a sensory issue.  Along with finding someone to really take care of you and the baby, you might want to consider having early intervention evaluate Gavin for feeding issues.  It's a free service, in your home and if your baby qualifies for therapy, he will receive it free of charge, at home.  The best thing that happens is they say he's perfect, don't change a thing; worst case they say he's having a significant enough problem feeding to qualify him for feeding/speech therapy.  It's one more thing you can do to make sure he is healthy and well.



Quoting victoriangavin:

Idk, when i hold a bottle of fresh pumped milk it's as hot as my coffee, he constantly threw up my milk and it looked like milk that had sat out for a week and curdled. When I got sick and had to give him bottles i started out with room temp and worked him up to cold and he stopped throwing up. For a long time I refused to do this because i thought it couldn't be too hot and insted changed my diet. Cold bottles is the only thing that fixed it... He's 5 months and is only going thru 5 daipers a day now... I drink fluids constantly but stay dehydrated because of the diarea. Sorry never been good at spelling and I try hard to get better





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eema.gray
by on Feb. 14, 2013 at 11:16 AM

Eighteen pounds at 5 months old doesn't sound like poor weight gain at all!  We look for a pound a month from lowest weight so even if he was one of the nine or ten pound babies at birth, he has more than exceeded his expected gain for his age.  Expect to see him slow down, possibly stop gaining at all, between now and a year of age.  Is he developmentally on track?

If he hasn't been checked for a tongue tie, I would get that sorted because ties can cause feeding issues, if not now certainly when he starts solids in a few months.

I'm sure you know, you need a doctor who will help you get your health issues sorted.  The quality of your milk will not be affected by poor health BUT your health problems now, while nursing, may play a significant role in your long term health.  If you're not properly absorbing the minerals and vitamins needed for bone health, for example, your body will rob your bones directly for those nutrients for your baby, which will put you at much greater risk of osteoperosis as you age.  So keep after your doctors to figure out what's going on with you.  If it were me, I would go on a total elimination diet for six or eight weeks and then slowly reintroduce foods to find out which ones are problematic.  The nightshade group (peppers, eggplant, white potatoes, tomatoes) can be very difficult on some digestive systems and are a common source of food allergies.


Quoting victoriangavin:

I'll have to check into that :) he's 5 months and is a solid almost 18lbs with no fat rolls


Quoting eema.gray:

Five-ish diapers a day sounds about right for a five month old.  :-)  

Have you posted his weight history?  Babies tend to slow their weight gain over time.

The cold vs hot bottles could also be a sensory issue.  Along with finding someone to really take care of you and the baby, you might want to consider having early intervention evaluate Gavin for feeding issues.  It's a free service, in your home and if your baby qualifies for therapy, he will receive it free of charge, at home.  The best thing that happens is they say he's perfect, don't change a thing; worst case they say he's having a significant enough problem feeding to qualify him for feeding/speech therapy.  It's one more thing you can do to make sure he is healthy and well.



Quoting victoriangavin:

Idk, when i hold a bottle of fresh pumped milk it's as hot as my coffee, he constantly threw up my milk and it looked like milk that had sat out for a week and curdled. When I got sick and had to give him bottles i started out with room temp and worked him up to cold and he stopped throwing up. For a long time I refused to do this because i thought it couldn't be too hot and insted changed my diet. Cold bottles is the only thing that fixed it... He's 5 months and is only going thru 5 daipers a day now... I drink fluids constantly but stay dehydrated because of the diarea. Sorry never been good at spelling and I try hard to get better







"I am only one, but I am still one; I cannot do everything, but still I can do something; and because I cannot do everything I will not refuse to do the something that I can do." ~~ Edward Everett Hale 1822-1909
victoriangavin
by on Feb. 14, 2013 at 11:30 AM
He was 7lbs 11 oz at birth and 7lbs 1oz when we left the hospital 3 days later... I'll get his pedi to check for a tongue tie. Wouldn't he still be throwing up the cold milk if it were allergies? He can't handle it when i eat broccoli or peppers


Quoting eema.gray:

Eighteen pounds at 5 months old doesn't sound like poor weight gain at all!  We look for a pound a month from lowest weight so even if he was one of the nine or ten pound babies at birth, he has more than exceeded his expected gain for his age.  Expect to see him slow down, possibly stop gaining at all, between now and a year of age.  Is he developmentally on track?

If he hasn't been checked for a tongue tie, I would get that sorted because ties can cause feeding issues, if not now certainly when he starts solids in a few months.

I'm sure you know, you need a doctor who will help you get your health issues sorted.  The quality of your milk will not be affected by poor health BUT your health problems now, while nursing, may play a significant role in your long term health.  If you're not properly absorbing the minerals and vitamins needed for bone health, for example, your body will rob your bones directly for those nutrients for your baby, which will put you at much greater risk of osteoperosis as you age.  So keep after your doctors to figure out what's going on with you.  If it were me, I would go on a total elimination diet for six or eight weeks and then slowly reintroduce foods to find out which ones are problematic.  The nightshade group (peppers, eggplant, white potatoes, tomatoes) can be very difficult on some digestive systems and are a common source of food allergies.



Quoting victoriangavin:

I'll have to check into that :) he's 5 months and is a solid almost 18lbs with no fat rolls





Quoting eema.gray:

Five-ish diapers a day sounds about right for a five month old.  :-)  

Have you posted his weight history?  Babies tend to slow their weight gain over time.

The cold vs hot bottles could also be a sensory issue.  Along with finding someone to really take care of you and the baby, you might want to consider having early intervention evaluate Gavin for feeding issues.  It's a free service, in your home and if your baby qualifies for therapy, he will receive it free of charge, at home.  The best thing that happens is they say he's perfect, don't change a thing; worst case they say he's having a significant enough problem feeding to qualify him for feeding/speech therapy.  It's one more thing you can do to make sure he is healthy and well.




Quoting victoriangavin:

Idk, when i hold a bottle of fresh pumped milk it's as hot as my coffee, he constantly threw up my milk and it looked like milk that had sat out for a week and curdled. When I got sick and had to give him bottles i started out with room temp and worked him up to cold and he stopped throwing up. For a long time I refused to do this because i thought it couldn't be too hot and insted changed my diet. Cold bottles is the only thing that fixed it... He's 5 months and is only going thru 5 daipers a day now... I drink fluids constantly but stay dehydrated because of the diarea. Sorry never been good at spelling and I try hard to get better











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eema.gray
by on Feb. 14, 2013 at 11:33 AM

Honestly, appart from **maybe** having a tongue tie, it really doesn't sound like your son has any issues at all, assuming he's having normal bowel movements, doesn't have skin problems, and his development is on track for his age.  You, on the other had, 5 months of runny stool is not healthy and you need to keep on top of your doctor about figuring that out.


Quoting victoriangavin:

He was 7lbs 11 oz at birth and 7lbs 1oz when we left the hospital 3 days later... I'll get his pedi to check for a tongue tie. Wouldn't he still be throwing up the cold milk if it were allergies? He can't handle it when i eat broccoli or peppers


Quoting eema.gray:

Eighteen pounds at 5 months old doesn't sound like poor weight gain at all!  We look for a pound a month from lowest weight so even if he was one of the nine or ten pound babies at birth, he has more than exceeded his expected gain for his age.  Expect to see him slow down, possibly stop gaining at all, between now and a year of age.  Is he developmentally on track?

If he hasn't been checked for a tongue tie, I would get that sorted because ties can cause feeding issues, if not now certainly when he starts solids in a few months.

I'm sure you know, you need a doctor who will help you get your health issues sorted.  The quality of your milk will not be affected by poor health BUT your health problems now, while nursing, may play a significant role in your long term health.  If you're not properly absorbing the minerals and vitamins needed for bone health, for example, your body will rob your bones directly for those nutrients for your baby, which will put you at much greater risk of osteoperosis as you age.  So keep after your doctors to figure out what's going on with you.  If it were me, I would go on a total elimination diet for six or eight weeks and then slowly reintroduce foods to find out which ones are problematic.  The nightshade group (peppers, eggplant, white potatoes, tomatoes) can be very difficult on some digestive systems and are a common source of food allergies.



Quoting victoriangavin:

I'll have to check into that :) he's 5 months and is a solid almost 18lbs with no fat rolls





Quoting eema.gray:

Five-ish diapers a day sounds about right for a five month old.  :-)  

Have you posted his weight history?  Babies tend to slow their weight gain over time.

The cold vs hot bottles could also be a sensory issue.  Along with finding someone to really take care of you and the baby, you might want to consider having early intervention evaluate Gavin for feeding issues.  It's a free service, in your home and if your baby qualifies for therapy, he will receive it free of charge, at home.  The best thing that happens is they say he's perfect, don't change a thing; worst case they say he's having a significant enough problem feeding to qualify him for feeding/speech therapy.  It's one more thing you can do to make sure he is healthy and well.




Quoting victoriangavin:

Idk, when i hold a bottle of fresh pumped milk it's as hot as my coffee, he constantly threw up my milk and it looked like milk that had sat out for a week and curdled. When I got sick and had to give him bottles i started out with room temp and worked him up to cold and he stopped throwing up. For a long time I refused to do this because i thought it couldn't be too hot and insted changed my diet. Cold bottles is the only thing that fixed it... He's 5 months and is only going thru 5 daipers a day now... I drink fluids constantly but stay dehydrated because of the diarea. Sorry never been good at spelling and I try hard to get better













"I am only one, but I am still one; I cannot do everything, but still I can do something; and because I cannot do everything I will not refuse to do the something that I can do." ~~ Edward Everett Hale 1822-1909
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