Megan's Gagging Isn't Any Better

[mouse]

I am so sorry Tanya. But I am so glad that you are there and that maybe they will see what is happening at home. This might provide some answers before the surgery. Hugs and prayers.

[Judyin Philly]

Well only thing good about your news is 'she's safe for the nite'

gosh, this just has to end for you dear friend..I wish i could brings some chicken and hardboiled eggs and baccon for the top of that salad.. shoot, can't remember what you can eat...or not eat..maybe have some can's of tuna in the room. wish those packets didn't have soy in them..

well i'm going to bed in a few minutes but wanted to ck in. will go look up into the skys with Robbin (I think it's you) who pray on the stars with her family) and send up a few more prayers.

do you come home at nite? if you stay there how do you do the computer.

how far is Vandy from your home?

love and hugs and going to look for that star.

Judy

[Rhonda]

Hi, my name is Rhonda. I saw your message from early June today for the first time. I have never been to this message board before even though I have celiac disease. My sister sent me a link for some gluten-free play dough, and I came across your message and had to respond.

Our son, Dax, does not have a heart condition, but he exhibited many of the same gagging, retching and vomiting symptoms for the first 2 ½ years of his life that your daughter seems to have. I’m not saying that Megan has the same issue, but it might be worth your time to look into this…

We were able to figure out what his problem is, but beware, very few doctors believe our diagnosis. At some point you have to stop caring about what the doctors think, and go with what you know is fact, based on months and months, actually literally years of dietary experimentation.

Through very extensive elimination diet research we discovered that our son has an allergy (or sensitivity, or whatever you want to call it) to sulfites.

No problem, right? All you have to do is eliminate the sulfites from your diet, and therefore your daughter’s diet. Unfortunately, it not as easy as that. Sulfites are used as preservatives in many, many food products. And the most amazing thing is that the food manufacturers are NOT required to list sulfites as an ingredient (it’s a processing chemical and fungicide, not an “ingredient”). So you’re probably eating loads of sulfites and you don’t even know it.

The symptoms you describe, other than the heart ailment, are almost identical to our son’s. He would gag and vomit many times each day. Most of the time it was projectile vomiting, but some of the time it wasn’t. He would sometimes cough to the point where he would make himself vomit, and he vomited every time he cried. I learned that coughing and vomiting are symptoms of asthma. You don’t have to have the wheezing and breathing difficulties that most people associate with asthma.

For us the elimination diets weren’t as bad as they might be for some people. I’m celiac (so I am used to substitutions), dairy-free (daughter’s allergy), and vegetarian (so we didn’t have to think about the meat, and therefore hormone implications). While Dax was still breastfeeding, we tried some eliminations, but it wasn’t until he was weaned, and eating other foods, that the clues became more clear.

I decided to keep a comprehensive food journal. Everything he ate, including the amounts went into the journal. Eventually we noticed that some foods always made Dax throw up, often immediately, but sometimes after 12-24 hours. After months of dietary experimentation and internet research, I determined that the culprit was very likely this unknown chemical known as sulfite. When we tested with foods that were specifically labeled as being laced with sulfites, we could elicit the vomit response very predictably. When we tried with foods that weren’t labeled as containing sulfites, but we knew them to contain sulfites, we always got the reaction, although sometimes the reaction was delayed or less pronounced (at least the volume of vomit was smaller). Also each time he had sulfites, it would take his body two weeks to get back to normal.

Then we thought it made sense to have him tested by allergy “professionals”. We thought that maybe the allergists at Denver’s world renowned allergy specialty hospital, National Jewish Hospital, would be able to test our diagnosis, and if we missed something or if we were wrong, they could help us out.

Now, don’t get me wrong, not all doctors are bad, it can be a noble profession with noble people, we just haven’t had much luck when it’s come to this issue. The doctors at National Jewish simply ignored our diagnosis of sulfites. They brushed off the months of the food journal, and ignored the correlations between the food and the reactions. While they did an abbreviated set of scratch tests, they would not test for sulfites because they said it was too difficult, and was not in the Top 10 major allergies, so it was unlikely that Dax suffered from this issue. Regarding his vomiting, they simply prescribed Prevacid, and suggested that we have a temporary implant placed in Dax’s esophagus to test the extent of the reflux that was causing his vomiting. Regarding his asthma like symptoms, they prescribed a steroidal puffer (note, this was laced heavily with sulfites). When I wasn’t looking, they suggested to my husband that he needed to make sure that we got rid of our dogs, which they thought were causing the asthma symptoms.

These experts at National Jewish said that Dax had a pediatric version of GERD (Gastroesophageal Reflux Disease), and they said he would need to be on drugs (“the little purple pill”) for the rest of his life. (BTW, he doesn’t need the pills).

Dax exhibited many of the symptoms of EE / EG, but eliminating the sulfites made those symptoms disappear.

After evaluating all of the input and experimentation, we are sure that sulfites are the culprit. We can tell how much sulfites are in something by how soon he vomits after he eats it. This range is anywhere between 5 minutes and 24 hours. Things that everyone thinks are good and wholesome for their kids are laced with this stuff, and while some like our son have extreme reactions from sulfites, everyone has some level of reaction, it’s just a matter of degrees. In our house we all eat the same food, and we all feel better without sulfites.

So what are the food culprits (not a complete list):

• Many fresh fruits are sprayed in the fields with sulfites as a fungicide. You can’t wash it all off. Grapes and apricots are especially bad. Our rule is that if we’re going to eat fresh fruit, if it’s not organic, we peel it. This really works for us.

• Most green leafy veggies are sprayed with sulfites unless they’re organic, especially lettuce and spinach (sulfites keep things from turning brown)

• Anything that is labeled as containing sulfite, sulfur dioxide, or metabisulfite, has so much of this stuff in it that no human should consume it.

• Dried fruit, coconut

• Corn syrup is especially bad (also called glucose) (note that Neocate’s #1 ingredient is corn syrup – Dax vomits very quickly after consuming any amount of corn syrup…even just a very small amount – and we know he doesn’t have a corn allergy because he can eat a whole cob of fresh corn on the cob, corn tortillas or canned corn)

• Corn starch

• Some potato starch if they use sulfites to bleach it (and they don’t have to tell you)

• Grapes, if they’re not organic, are always covered in sulfites. Grape juice, is likely loaded with sulfites (and the label will not inform you).

• Wine – even what they say is sulfite free – In most wines they use mega-doses of sulfites to stop the fermentation process

• Raisins

• Potato products (especially frozen potatoes, and french fries)

• Most juices if they’re from concentrate, lemon juice concentrate is really bad, we haven’t had any problem with orange juice from concentrate if there’s no corn syrup in it

• Strawberries, cherries, apricots, apples, spinach if not organic

• Frozen squash and frozen spinach

• Food coloring Yellow #5

• Cheese (all types, the harder or older, the more sulfites)

We also found that ensuring Dax had adequate B-vitamins and Magnesium helped him metabolize any stray sulfites that got into his diet. The difference was quite noticeable when he would eat a few dates or pistachios (both decent magnesium sources). Perhaps if you make sure you are getting more B’s and Mag in your diet, Megan will get those minerals in your milk. Sulfites, like the good vitamins and minerals, will definitely go through in your milk. Dax started throwing up from sulfites (via breast milk) from his first week of life.

Safe gluten free foods that don’t have sulfites include:

• Corn chips and corn torillas

• Beans of all types (read the label on canned to make sure there’s no sulfite – they are listed when they’re in beans)

• Just about all fruits and vegetables that are labeled ORGANIC. From what we’ve read, and from our experience with Dax, sulfites are not allowed on organic produce. All fruits you peel seem to be fine even if they’re not organic (bananas, oranges, etc) Oranges in cans are really, really bad

• Nuts

• Organic cereals like Buckwheat, Rice, Flax,

• Van’s gluten free waffles

• There’s lots of others, but I’ve already written a book here…

By the way, laundry detergents, soaps, and shampoo often contain sulfites. All Free is safe. Please let me know if you have any questions. Dax is now 5, so I have had a lot of practice at this diet now. The best information I could find on sulfites is here. Go to Open Original Shared Link then click on “Headaches, Asthma, Fries and a Cola”.

Sorry if this was too long for this board, but we’ve learned so much, and the information was so hard to find. We want to help anyone we can, and the symptoms Megan has are so similar to Dax’s.

We will keep you and Megan in our prayers. Thanks for the updates on how she is doing.

[Cheri A]

((Tanya and Megan)) ~ I am sorry that she is back at Vandy but hopeful that they will see what you are dealing with at home during the night.. I'm praying for you, the doctors and nurses that are in contact with you. Wish I was closer to help you too!!

Rhonda ~ thanx for taking the time to post all of that. I am SO sick of reading of all the crap that is on our food and THEY don't tell us! In addition to being gluten-free, I also follow a strict diet for my dd. I am also trying to keep out all the HFCS and trans-fat. I'm going to look @ that site and see about sulfites. I really don't like how they are always messing with our food.

[Judyin Philly]

Rhonda-- thanks for the outstaiding post.

do u know if there is a connection with MSG and sulfites? gLAD YOUR LITTLE GUY IS DOING WELL AND YOUR SOME DETECTIVE, MOM.

I think that Ursula has a sulfites link on her page too.

lots to read and asorbe..

HI TANYA,

HOPE ALL IS GOING WELL..NOT MANY STARS OUT LAST NITE BUT FINALLY FOUND ONE. WAS IT YOURS ROBBIN? .

jUDY IN PHILLY

[jerseyangel]

Rhonda--Thank you for all of that great information on sulfates. I suspect that I have a problem with them, and your post clarified a lot of things. Welcome to the board--I hope you will continue to post

Tanya--I was out of town for a few days and just checked in. I continue to pray for Megan. I hope that now that she's in the hospital for observation, the doctors will be able to pick up on something. I know what Cheri means--I so wish I was closer and could help in some tangible way. Megan sure has a lot of concerned "aunts and uncles" here! Stay strong, Tanya, you are an amazing mom

[penguin]

I hope all goes well for Megan!

[Judyin Philly]

DITTO JERSEY--I so wish I was closer and could help in some tangible way. Megan sure has a lot of concerned "aunts and uncles" here! Stay strong, Tanya, you are an amazing mom

HEY, pATTI WELCOME HOME HOW DID YOUR TRIP GO CAN'T WAIT TO HEAR ALL ABOUT IT.

LOVE AND HUGS TO ALL ESP MEGS AND MOM

JUDY IN PHILLY

[AndreaB]

Rhonda,

Wow, thank you for that post. I didn't realize sulfites were in so many things . Just like the hidden MSG . I too with they would leave our food supply alone. Tanya is sure to appreciate the info.

Tanya,

I hope last night went well. Hugs for you and Megan. I too wish I could help more. We love you and are lifting you guys up to Jesus in prayer.

[Rhonda]

Cheri -- I am glad you brought up the trans-fat. I too keep all partially and fully hydrogenated oils out of our diet. One of the first articles I read about asthma said to not eat partially hydrogenated fat, and I am sure we are healthier without it.

Judy -- I don’t know any link between sulfites and MSG other than they are both additives that shouldn’t be added. Can you tell me how to get to Ursula’s page? I would like to read the sulfite information she has linked to.

Patti -- Thanks for the welcome. You are an amazing group here. I saw that there were way over 200 posts on one subject and just had to look. I just wanted to clear one thing up…. Sulfites and bad but sulfates are just fine. It has to do with the free radical oxygen (SO3) in a sulfite, whereas sulfates (SO4) have the oxygen paired. The good news is you don’t have to know the chemistry to stay away from sulfites. I just wanted to be sure that you didn’t remove the good stuff (sulfates) from your diet.

If you have any questions about sulfites in specific foods I am happy to answer them. Dax is an amazing (yet very messy) gage when it comes to sulfites.

Do any of you have celiac disease or is it your children?

Rhonda

[AndreaB]

Rhonda,

I believe Ursula has a link on salactilites (sp?). If you hit members on the top of the page by search you can put in u and it will come up with users that start with u. If the list is too long, then at the bottom of the page you can search her name or part of it.

[evie]

Eyes upward to stars and God, sending prayers for little Megan, you and your family. I agree, you are a strong mother to hold up/ no complaint thru all these many rough days. I have always heard that god sends the special children and etc people to those who can handle difficult situations, He was right. Love and prayers,<<>> evie

[TCA]

WOW! Thanks Rhonda for the info. Welcome to the board and thank you soooo much for responding. I'm trying to get the @#$@#$#@$ printer to work here at at the hospital to print this off to show the drs. It's a lot to absorb in one reading! I sooo appreciate you taking the time, though. so many things I thought were good are actually possibly hurting her. This is sooo hard to figure out!!! I'm desperate to try anything, though.

We're about 2.5 hrs. from the hospital, and yes I stay. We never leave Meg alone in the hospital at all. too many mistakes can happen from well intentioned people. My husband is about to leave to go home and check on Cole who's staying with a close family friend. If we have to stay, he'll bring him back up. Hopefully we can get a room in Ronald McDonald House (such a blessing too).

Meg's had a couple mini spells today, but nothing major. We'll see how it goes. No clues yet as to what's going on. she's still charming the nurses with her smile and wave. she amazes me every day. She's the one with the strength, not me.

Still haven't heard from the biopsies. Hopefully we'll know something soon.

Vandy sent a dietician to the room today to talk about food options. They've been great about it. They're making some mistakes, but doing really good. They've even gone to Wild Oats to get some snack type stuff. I was really impressed. She actually wants me to hlep her learn more about good products for other gluten-free patients. So far, no glutening! They did make a mistake on the dairy free side, but I just didn't eat it. It's better than I thought.

Thanks so much for the prayers. I really can't tell all of you what it means. We are blessed beyond measure. God is so good to me. I'm tearing up and don't know what to say, just consider yourselves hugged!

Love,

Tanya

[Judyin Philly]

We're about 2.5 hrs. from the hospital, and yes I stay.

Meg's had a couple mini spells today, but nothing major. We'll see how it goes. No clues yet

Still haven't heard from the biopsies. Hopefully we'll know something soon.

Vandy sent a dietician to the room today to talk about food options.

Thanks so much for the prayers. I really can't tell all of you what it means. We are blessed beyond measure. God is so good to me. I'm tearing up and don't know what to say, just consider yourselves hugged!

Love,

Tanya

Your are the one who gives us 'strenght and you are such a role model for all of us'.. It is a honor to have you look to us for strenght. I know i wouldn't have what you do but guess when i comes to our kids we just 'do what it takes' glad your staying 24/7 and the dietiton is so helpful. Have to go to celiac disease seminar to night but wanted to ck on you before i left and if you can get to a computer later. wil watch for a post. hope they can figure something out for you guys. that info from Rhonda was amazing..

love and hugs and prayers.

judy in philly

[mouse]

Hi Tanya. Thank you for posting. I agree with Judy, that you are the one who gives us strength. I can only replay my words again "that my prayers and hugs are always with you, Megan and your family".

[Judyin Philly]

TANYA--WELL I WENT OUT AGAIN INTO THE OPRESSIVE HEAT AND HUMIDITY (ONLY FOR YOU BABE) AND STILL NOT STARS TO PRAY ON. THERE IS ALWAYS ONE..AT LEAST AND THAT'S MY DAD...BUT GUESS IT'S TO CLOUDS DO TO STORMS ON THE WAY.

PRAYING ON MY 'FAMILY MUSTARD SEED' THERE IS A LONG FAMILY STORY ON MY MUSTARD SEED. WILL SHARE MY STORY WITH YOU SOMETIME. PRAYING FOR ANSWERS, STRENGHT, AND HEALING.

LOVE

JUDY

[Guest Robbin]

Tanya, I agree, you are an inspiration. I will continue to pray for you and Megan and will also pray that the drs., nurses and dieticians will figure this out and take extra good care of you both. I felt so bad that all you had was salad to eat. That really was a sad thought. I'm glad they are trying harder to get food you can have. Geez, with the prices they charge, they SHOULD!!

Judy, I DO pray on stars, but I didn't post that!! That is funny, I looked out last night and there were no stars here! Must have been your special one to pray on!!

Rhonda-Welcome, and Thank you so much for that information!! This might be a help to many of us --I think it might be a clue to my youngest son's problems with some foods and I will check this out asap.

[Judyin Philly]

shoot, wonder who it was. hate to back to find it. too tired tonight

babysat for a friends kids at 7:00 am and then did work on celiac support group all day on computer and then went to meeting and so tired can't keep eyes open

will post more tomorrow on my thread..just too tired tonight. maybe it was Fiddle faddle who prayed with her kids on the stars.. i'm seeing stars in my mind now.

nite

judy

[Fiddle-Faddle]

Yup, that's us! Rainy here today, but we know the starts are there!

Rhonda, thanks for your extrememly informative post. My husband is a chemist, and he was trying to look stuff about it last night, and HE finds it confusing, so obviously it'snot a simple issue. Here is what I found on the screen this morning when I got up: Open Original Shared Link. It certainly didn't seem to explain causes or reasons, but at least it's something "scientific" to show doctors if you suspect sulfites to be the problem.

Tanya, I hope you and Megan are still doing well. Do they expect to keep Megan at Vandy all the way until surgery, or are you only there for a couple of days? Or is it all up in the air still?

Love, hugs and prayers,

Alison

[Rachel--24]

Rhonda,

Thanks for your post. I'm sensitive to both msg and sulfites. I've done alot of research on both but still learning. When I was learning about what foods contain sulfites I had read that its no longer legal for them to spray sulfites on fresh produce with the exception of grapes and fresh potato products. Is this not true? I read it on several sites about sulfites.

Ursulas links are for lectins and salicylates.

Thanks again and welcome to the board.

[VydorScope]

Rhonda,

Thanks for your post. I'm sensitive to both msg and sulfites. I've done alot of research on both but still learning. When I was learning about what foods contain sulfites I had read that its no longer legal for them to spray sulfites on fresh produce with the exception of grapes and fresh potato products. Is this not true? I read it on several sites about sulfites.

Ursulas links are for lectins and salicylates.

Thanks again and welcome to the board.

Why grapes and pots?

[Cheri A]

Checking in to see if there was any news from Tanya... saying a prayer for you, Megan and all the doctors, nurses, nutritionists that you come into contact with today..

[Judyin Philly]

Hi all- see lots of names checking in on Tanya and Megan.

Tanya still sending hugs and prayers your way.

Vincent..know you'd post here if you hear from her correct..dumb Q cause know you will.

Judy in Philly

[Rhonda]

Andrea – Thanks for helping me get to Ursula’s link. I’m new to forums, and really appreciate the help.

Robin – Thanks for making me feel so welcome. All of you are so friendy here. I just read the footnote to your message and saw that your son seems to be allergic to most fresh fruits and vegetables. If you try him on organic fruits and vegetables, please let me know how he does with them. It took Dax a while to even want to try some of them because before they made him feel so bad. Now he just makes sure they are organic before he eats them.

Rachel – Thanks for the welcome, also thanks for bringing this up. I read this everywhere in my studying too.

Taken from: Open Original Shared Link

“In 1985, FASEB concluded that sulfites are safe for most people, but pose a hazard of unpredictable severity to asthmatics and others who are sensitive to these preservatives. Based on this report, FDA took the following regulatory actions in 1986:

• Prohibited the use of sulfites to maintain color and crispness on fruits and vegetables meant to be eaten raw (for instance, restaurant salad bars or fresh produce in the supermarket).

• Required companies to list on product labels sulfiting agents that occur at concentrations of 10 ppm or higher, and any sulfiting agents that had a technical or functional effect in the food (for instance, as a preservative) regardless of the amount present. (This labeling requirement was extended to standardized foods, such as pickles and bottled lemon juice, in 1993.)”

So the answer is yes, but if you read it carefully, it is illegal to use sulfites to “maintain color and crispness”. It is not illegal to use sulfites in fertilizer, insecticides, herbicides, or any other spray used in the fields. This spraying is considered to be part of the process, and is not illegal. To make it worse, the ingredients in the chemical sprays used are considered proprietary, meaning they don’t have to tell anyone their secret. A while ago I found a California agricultural site that said that 3 of the most widely used sprays approved for use on strawberries contained sulfites. Dax got sick from some strawberries that we picked ourselves in the field. When he eats food with high sulfite content, he immediately throws up that particular food. We call it selective vomiting. When he ate these strawberries, he immediately threw them up.

Their trick is to use products that contain sulfites, not sulfites themselves. For instance, you can’t use sulfites on red meat because the meat could be completely rotten and still look good. Instead they can use corn syrup, molasses, or wine.

Vvdorscope – Potatoes turn a very ugly grey when frozen, so sulfites maintain color, but they are not “meant to be eaten raw”. So it is not illegal to use sulfites. They don’t actually sulfite grapes, they gas them with sulfur dioxide (SO2 not SO3). The problem is our bodies react to sulfur dioxide the same way as sulfites. Also grapes usually say they have been treated.

Alison – It is very complex, especially when there is a lot of miss information. If you are interested I can try to find some of the studies that I have read. Many tests have been done to try to figure out sulfite allergies and reactions (most of these were from other countries) . Many people had reactions of increased heart rate, and blood pressure, and many had increased breathing rates. The problem with a lot of the tests was the person giving the dose of sulfite only tested reactions for 6-8 hours then sent them home. Dax either immediately vomits, or doesn’t have a reaction for 12-24 hours. One thing I did learn from reading through a lot of these tests is apple sauce because of citric acid speeds up the reaction to sulfites. Vitamin B12 slows down the reaction.

Tanya – I am very curious to know what your doctors say about sulfites. Our GP was the only doctor I found who was open to the idea, although he knew nothing about them. Doctors don’t like it when they can’t test for it, and there is no standardized laboratory test they can give. I wanted to add that gelatin has tons of sulfites in it. My husband reminded me that hospitals like to give people Jell-O, Jell-O is mostly gelatin, and the sulfite content in gelatin is extremely high.

One other thing. The meds Megan is on contain sulfites. Prevacid contains gelatin, Reglan contains cornstarch, and carafate contains sorbitol. Here is a link to what one mother said about sorbitol affecting her daughter (she was taking Carafate) Open Original Shared Link then click “Corn Syrup – Sorbitol Connection”

Just to give you an idea of the amount needed to make Dax sick. The cornstarch in half of a Tylenol will make him cough uncontrollably and immediately vomit.

I have only known about Megan for a couple of day now, but I think of her often, and wish I could help more. My family is keeping all of you in our prayers. I still can’t believe that you never complain. You are amazing. By the way, if you need to complain, it is O.K. we are here for that too.

Rhonda

[VydorScope]

Hi all- see lots of names checking in on Tanya and Megan.

Tanya still sending hugs and prayers your way.

Vincent..know you'd post here if you hear from her correct..dumb Q cause know you will.

Judy in Philly

Kristi (me wifey!) called her and spoke for a bit, but there was no new news at that time. We was just checking on her. If I get new news I will definlty post.