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Sulfites


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27 replies to this topic

#16 tiredofdoctors!!!

 
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Posted 15 July 2006 - 12:29 AM

Don't know if your children are gluten-sensitive, but there are several soy milks on the market that contain gluten . . . found out the hard way, after the dietician told me . . . . I know I'm kind of 'chiming in on the end', but just wanted to make sure they didn't get 'glutened' if they're intolerant . . . .
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Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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#17 TCA

 
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Posted 15 July 2006 - 07:09 AM

Wow! Thanks for the info. I know what you mean about ignorance. We have well intentioned family and friends do stuff for us all the time that ends up doing more harm than good.

Foods: I do eat a lot of frozen fish and shrimp, so that could be contributing. About the only corn syrup I eat is in BBQ sauce, but that is easily eliminated. Meg is allergic to milk and eggs, so I'm already using Silk Soy milk. I thought Heinz Organic had gluten in it. Did I remember that wrong? I've read therough the Headaches, Fries, and a Cola site and saw peanuts and pork listed. I eat this, so I guess they're gone now too. Also, are all the furits and veggies (except the ones you peel) organic?

Formula: This is a HUGE issue. Meg has a feeding tube that runs directly to her intestines. She aspirates constantly, so she had to have this tube placed. It runs 24x7 just to keep her from losing weight. She hasn't had any weight gain in a week and a half. Her heart has to work so hard because of the hole in it that she burns soooo many calories. She has been on breast milk alone and loses weight because it's only 20 cal/oz. She's on Neocate 1+, which is 30 cal/oz. I mix it half and half and she's tolerating that ok, but not great. When the tube just went to her stomach she would vomit that and every other formula in a projectile manner. If sulfites are the issue, than might explain why. She is still gagging terribly, but I don't know what to do. We are about 10 days out from open heart surgery and we CAN'T go into it with her losing weight. She's only 16-10 at almost 15 mos. So you know of any formula that is sulfite free? The only one that I've found that is corn free is Alimentum RTF, but it's only 20 cal/oz, so that won't help. I checked on the homemade formulas, but the only one I saw that was even possible with her other intolerances and allergies was the one made with Liver. I'll have to do a nutritional analysis for calories on this one though.

Meds: I've checked and none of megs meds contain corn syrup or corn startch except infant's tylenol drops. Do you know of a good replacement for pain killers? I'm still working on the gelatin part. She's on Prevacid solutabs, which are corn free, but they do have gelatin. I didn't think the pharmacist knew what he was talking about, but I don't yet know enough to correct him. He was trying to help. She just had a scope that showed acid damage to the esophogus, so I don't know what to do about the prevacid. Do you know of another drug that would be sulfite free that we could substitute? Prilosec has corn syrup, so I know it's out. Zantac might work, but it's nowhere near as strong. Apparently Nexium is out too.


Plan: I'm wondering if I don't need to eliminate sulfites from my diet and start giving her EBM only after surgery to see how she does on that. I'm still concerned about the meds, but I'm working on that. The GI is for me doing a trial, but didn't have a clue as to how to get the calories in her. We're really at the end of our rope on this one. We've tried everything you can imagine up to this point. I'm considering taking her off of everything with sulfites for 24 hrs and just see what happens. The key is making sure I can figure out what all has sulfites now! Especially meds. I don't want to do the trial until I know I have it right because losing that many calories and her meds in a day could be detrimental to her this close to surgery. Yet if it works, we'll just have to figure something out.

Thanks so much for the info. You really are a God-send!
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If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#18 Rachel--24

 
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Posted 15 July 2006 - 07:56 AM

Rhonda,

Thanks so much for starting this thread and for doing so much to help Tanya.
I've studied and researched sulfites alot but its still hard to figure it all out. Do nut butters contain any sulfites if they have no ingredients other than organic peanuts?
Thanks for all your imformative posts.
I agree with Tanya, you are a Godsend. :)
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#19 Rhonda

 
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Posted 15 July 2006 - 06:31 PM

Do nut butters contain any sulfites if they have no ingredients other than organic peanuts?


Rachel -- Organic peanuts are sulfite free. The peanut butter we use is organic Kirkland Signature (Costco), and contains dry roasted organic peanuts, organic palm oil, and salt. It doesn't make Dax sick so we are pretty sure it is sulfite free.

Tonya -- I just read this and will respond in a little bit.

Rhonda
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#20 Rhonda

 
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Posted 17 July 2006 - 10:49 AM

Foods: I do eat a lot of frozen fish and shrimp, so that could be contributing. About the only corn syrup I eat is in BBQ sauce, but that is easily eliminated. Meg is allergic to milk and eggs, so I'm already using Silk Soy milk. I thought Heinz Organic had gluten in it. Did I remember that wrong? I've read through the Headaches, Fries, and a Cola site and saw peanuts and pork listed. I eat this, so I guess they're gone now too. Also, are all the fruits and veggies (except the ones you peel) organic?


Tanya,

You are right about the ketchup. I called Heinz today and they said that there is gluten in it. The guy I talked to said it was likely from the distilled vinegar but wouldn’t answer for sure because it is proprietary info. I thought all vinegar was now considered to be gluten free except for malt vinegar. Am I wrong? Maybe I should post this question somewhere else. I guess I will try Muir Glen, or Annie's Ketchup.

About the Headaches, Fries, and Cola site... This is the best site out there for sulfites, but we don't agree with a few things he says. Sugar (both white and brown) don't give Dax problems, peanuts, and eggs don't either. Having said this, maybe we don't give Dax enough to make him sick. The guy that wrote that site was talking about 1 cup of sugar. That is how much goes into a whole cake in our house, so he would never eat that much. Also, he only has one egg a day and a couple of Tablespoons of peanut butter when he has that. Did he say peanuts, or peanut butter? I know most regular peanut butter has partially hydrogenated oil, so we only get the organic peanut butter.

The fruits I listed before are the ones that I peel, except for blueberries. Blueberries have never been a problem for us. Maybe we just don't eat enough to get to the level of sulfites that he reacts to. All I can go by is if Dax throws up or not.

As I wrote to you earlier, I think the Prevacid solutabs are sulfite free. If you find something different please let me know. We use Children's Tylenol Meltaways bubblegum burst flavor. There is a tiny bit of dextrose it them, but this is the only medicine we can give Dax without a reaction. In the ingredients, there is less dextrose than color, and they are only slightly pink. The watermelon flavor looks like it would be okay, but we have never tried.

I don't know what EBM is. Does it stand for Evidence Based Medicine?

Please let me know if you have more questions. I leave Friday (21st) for 3 weeks, so I won't be posting after Thursday night.

All of you are in our thoughts and prayers. I wish I wasn't so far away, maybe I could help more.

Robbin,
How is your family doing, especially your son? Did you mention sulfites to him? Does he even want to try to see? Sorry for all the questions. I think of you often, especially when I look at the pineapple on our counter.

Rhonda
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#21 tiredofdoctors!!!

 
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Posted 17 July 2006 - 11:20 AM

My mom called Hunt's . . . . they said that there is no gluten in ANY of their tomato products, including their ketchup . . . don't know if that helps or not. . . . .
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Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

#22 TCA

 
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Posted 17 July 2006 - 12:14 PM

Rhonda,

Thanks for the info and the e-mail. Still trying to get in touch with Meg's drs. Our blueberries are from my in-law's bush, so I don't think they're in danger of having sulfites.

EBM is Expressed Breast Milk. sorry. It's easy to get lost in the acronyms!
Thanks for the prayers.

Tanya
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If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#23 tiredofdoctors!!!

 
tiredofdoctors!!!

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Posted 17 July 2006 - 10:01 PM

Does anyone know whether sulfites are capable of making their way into breast milk? Seriously, everything else seems to make its way there . . . . there was so much I couldn't eat when I was breastfeeding my two . . .
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Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

#24 TCA

 
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Posted 18 July 2006 - 04:49 AM

Does anyone know whether sulfites are capable of making their way into breast milk? Seriously, everything else seems to make its way there . . . . there was so much I couldn't eat when I was breastfeeding my two . . .



I don't know, but I'm assuming it can. I was told by multiple drs. that gluten couldn't and they were WRONG!!!!
  • 0
If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#25 Rhonda

 
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Posted 18 July 2006 - 09:40 AM

Does anyone know whether sulfites are capable of making their way into breast milk? Seriously, everything else seems to make its way there . . . . there was so much I couldn't eat when I was breastfeeding my two . . .


I'm sure it can. Dax only ate breastmilk for the whole first year of his life, and he projectile vomited at least five times a day. Now he is off sulfites and no more vomiting.

Rhonda
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#26 Guest_sulfitefreeindy_*

 
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Posted 18 November 2009 - 06:51 AM

I just came across this thread and Rhonda has provided such great information. After a decade of misdiagnosis, my husband was finally diagnosed with EE which confirmed his food allergy to suflites because that was the trigger. I also wanted to clarify that many fruits and vegetables have sulfites that occur naturally and, as is the case with my husband, even organic lettuce will trigger a GI response (so for the last year he has been lettuce free). We have also found that the degradation process vegetables go through increases the availability of their sulfite compounds. For example, my husband can eat fresh diced tomatoes and onions and then the left overs for the next two days, but on the fourth day it will make him sick - after one bite his throat will close/face go white/red spots on cheeks.

Good luck!
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#27 Lisa16

 
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Posted 18 November 2009 - 08:19 AM

Thank you for moving this up!

There are many, many people in the forum who have sulfite sensitivity/allergy. I get the red face and chest as well as swelling of the throat, tongue and joints.

I avoid them like the plague, but I learned somethings here which I did not know-- like the corn syrup (no wonder I could not tolerate it!) and the sorbitol. Thank you!
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#28 missybean

 
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Posted 24 November 2009 - 07:27 PM

This awesome information to know....thanks Rhonda! I loved the info on how to make your own formula. I didn't realize how often sulfites are used....I was just trying to avoid processed meats. Man it's in everything.
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