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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sulfites
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28 posts in this topic

Here is the new thread about sulfites. Sulfites usually cause swelling. The symptoms people get depend on where the swelling occurs. My son got asthma symptoms. Some people get increase heart rate, increased blood pressure, or sweating. Some people have increased breathing rate. A nice side affect for our family getting rid of sulfites, is my rosacea is gone.

The message below is what I wrote to try to help Megan and her family. I saw the post for the first time a few days ago, and had to respond because her situation was almost exactly the same as my son. It took us a long time to figure it out, and I thought I could maybe speed up the process for others.

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. (Not Sulfates)

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)

• Gelatin

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 http://members.aol.com/nosulfites/ 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.

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Hi again Rhonda--thanks for doing this--it's going to help a lot of people :)

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Rhonda, maybe we should start a thread on the sulfites. I got excited and teary when I read about this-I think my "little one" (he's 13!) may have a problem with it. Gelatin makes him very ill, so this was a big clue. To think he might be able to eat organic apples or berries without worrying would be a blessing. I think he would probably fight with me to even try. I will try to find something to try and keep the epi-pen and benadryl handy! I am a little afraid to try.

Robbin,

What are your son's symptoms? Can he eat apples when thay are peeled? We don't have the epi-pen, but I believe that there are sulfites in those. I just looked it up epi-pen contains Sodium Metabisulfite. Here is the link.

http://www.onlinepharmacynz.com/product/49...aphylaxis_.html

Benadryl and children's claratin work well for us though.

Here is a link to other people's stories. I didn't read all of them, but when I was researching, I couldn't read enough.

http://allergies.about.com/library/uc/uc-sulfites.htm

I really hope he can find a way to eat some on the yummy fruits. Dax had organic grapes for the first time last week. You should have seen how happy he was to finally be able to eat something he's never been able to eat before.

Good luck with your trials, and please let me know how it works out.

Rhonda

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Rhonda,

Thanks again for all the info. Between the sulfites and msg I'm finding it extremely difficult to stay feeling good. I react to produce but I thought it was only msg I needed to be concerned about. They spray a growth enhancer called Auxigro on the crops..and its 30% msg. Strawberries, grapes and potatoes are all heavily sprayed....actually the list is long..I think by now nearly all crops have been approved for Auxigro....even organic.

You say your son's reactions last 2 weeks? It can take me that long to start feeling good too...during that time I feel as if all foods bother me or trigger symptoms. Is it like this for your son?

I think this is useful information and from all I've read and experienced these substances can wreak serious havoc on the body and its very hard to diagnose. Also a very hard diet to follow due to inadequate labeling. Many people can react to sulfites under 10 ppm. Also, as is the case with msg...if the sulfites are coming from another ingredient such as corn syrup...it need not be declared at all. Its very tricky. <_<

Rachel,

I just read up a little bit about Auxigro. I had no idea that would be fine to put MSG on organic produce. Where do you find your groceries? Do you have a farmer’s market where you can ask about what they spray? We usually buy our produce from the farmer’s market in the summer, that way we can ask about what they spray and then test it out. If there is no reaction, we buy from them again.

When Dax gets sulfites (depending on the amount) he either immediately vomits, or vomits within the next 12-24 hours. Then for the next two weeks he can’t breathe properly, seems congested, snores at night, and gags sometimes. Also he won’t eat very much food. He takes a few bites and says he is full. Two weeks pass, he cleans his plate again, and seems like a new kid.

I think there are a lot of people who react to levels way under 10ppm. Dax reacts to very tiny amounts of things that are under 1ppm. I wish companies had to label better. How did you discover sulfites and msg? What are your reactions to sulfites and msg?

Rhonda

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Rhonda

Thanks so much for posting. WOW I'm impressed you posted..it took me weeks maybe months to get get the courage to post let alone sign up after weeks of 'lurking' and looking at the threads.

:) Congrats on being such a great addition to the board... :)

Can't wait to print and read this thread again in this format.. great idea.

Judy in Philly

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Rhonda,

Thank you so much for posting this info. We don't have reactions to sulfites that I know of but like to avoid as much harmful stuff as possible. It really angers me about the msg also. We have a farmers market about 1/2 hour south of us I may have to check out so I can talk to the farmers.

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Thanks for posting this! I wanted to let you know I called Neocate today and asked about sulfite content. they said they'd have to call me back, so I'll let you know what I learn. As for Megan's meds. I don't know what I can do about prevacid right now, but I'm trying to figure it out, but her Reglan is liquid and is corn free. The sorbitol issues is big in liquid meds, though. Hopefully surgery will get her off of a lot of them. This is a lot of info, but I'm tyring to get a plan together as to how to do a sulfite free trial for her. Thanks so much for your help!!!! You're a wonderful addition to the board.

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Thank you SO much for starting this thread. I had no idea that sulfites were considered O.K. for organic produce. NOT good.

My mother is HIGHLY reactive to sulfites (I'm sorry that I didn't see the previous thread.) She starts with bloating in her lower abdomen, which then goes up to her upper abdomen. She literally has to hold her stomach while she walks, because she has so much inflammation in her colon that for her abdomen contents to move while she walks is very painful. Then, she begins vomiting for hours. Then follows the big D. This continues for DAYS. She found this out by not understanding why, each time her sister visits, she gets this . . . and then it dawned on her . . . her sister brings her dried apricots. She read the ingredients, and the sulfites were on there. She did a challenge (only once convinced her), and makes SURE that she doesn't consume sulfites.

My son, as a very small child -- 16 months old, began having migraine headaches. They followed a specific pattern: He would become very hyperactive (normally a very laid-back child), would then get very pale, want me to rock him, and within 2 minutes after settling down, would literally projectile vomit all over me. I was taking him to the pediatrician constantly. At 18 months, he weighed 22 pounds. At 22 months, he weighed 18 pounds . . . the pediatrician asked me if I was making him diet. DIET????? A 22 month old baby??? I told him that he was projectile vomiting 4-5 nights per week. He told me that it was "normal" for a child of his age to "spit up" still . . . . I was so upset, but at that time of my life, so passive. I did tell him that I was concerned about the weight loss and the fact that Brandon was 9 lb 13 oz when he was born. Now he was almost two years old, and was only 8 pounds heavier than he was when he was born . . . .Obviously we changed pediatricians.

After much testing, we were sent to a neurologist who pinpointed it immediately . . . Brandon began eating finger-foods at 14 months. That included those little sausage sticks, then cut up hot dogs and bologna. It was the sulfites and sulfates. I was so grateful that we were sent to this man. Oddly, he is in my neurologist's office now, and I saw him and was able to thank him again. His son is in there as well, and he told his son that MY son was one of his first patients . . .. funny that a brand-spanking new neurologist pegged Brandon's problem immediately.

I had no idea that the other thread had been going on, or I would have been researching and participating. I apologize to the mother of that poor baby who has been having so much trouble. I'm saying prayers for you . . . . [[[[hugs]]]] Lynne

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Robbin,

What are your son's symptoms? Can he eat apples when thay are peeled? We don't have the epi-pen, but I believe that there are sulfites in those. I just looked it up epi-pen contains Sodium Metabisulfite. Here is the link.

http://www.onlinepharmacynz.com/product/49...aphylaxis_.html

Benadryl and children's claratin work well for us though.

Here is a link to other people's stories. I didn't read all of them, but when I was researching, I couldn't read enough.

http://allergies.about.com/library/uc/uc-sulfites.htm

I really hope he can find a way to eat some on the yummy fruits. Dax had organic grapes for the first time last week. You should have seen how happy he was to finally be able to eat something he's never been able to eat before.

Good luck with your trials, and please let me know how it works out.

Rhonda

Geez, even in the EPI-PEN?!! I will check out the info asap. No, even when we peel the apples, he gets swollen lips, tongue and hives on his cheeks. He gets the same reaction to almost all raw fruits and veggies except pineapple and pears. He doesn't like fruit or sweets much anyway, the direct opposite of my diabetic child (well, that one is 21, but a child to me! ) He is very thin and eats mostly potatoes, peas, broccoli (cooked) and meats. I pretty much make everything from scratch. I've posted this before, but I nursed him 2 1/2 years to AVOID food allergies!!! He is the most allergic person in our family! Oh well, life would be boring without a challenge or two, right? Thank you so much, again and I am glad little Dax is doing well and enjoying a grape! Simple pleasures are the best, right?

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Great thread, thanks for the information.

I've been trying to avoid sulfites for years, in my thirties I realized they were a trigger for migraine headaches for me. There went the red wine. :( I thought I could handle white wine but I had about 4 ounces the other night and ended up with a bad headache, not a migraine but not fun. I won't do that again.

Rachel I was glad to see you here, I was thinking about you and the dried fruit. :ph34r:

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I had no idea that sulfites were considered O.K. for organic produce. NOT good.

Lynne,

I just wanted to clarify...Sulfites are NOT allowed on organic produce. Auxigro contains MSG (not sulfites) and is allowed on organic produce.

Thanks for sharing about your mom and Brandon. It is so hard to help kids gain weight when they throw all their food up. Dax was so skinny that our doctor thought I had him on a diet, and he was breastfeeding almost constantly. He would stop eating, throw up, wait 30 minutes and want to eat again. I knew he was hungry because he just lost all his food.

I'm so happy you found someone that could help you diagnose Brandon. Did he have problems with sulfates also, or just sulfites? Dax has NO problems with sulfates, and eats them quite often.

Thanks again for your post. I had no idea projectile vomiting from sulfites was so common. When I was trying to find out about it, there was nothing out there.

Rhonda

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Tanya,

I am so happy to hear that Megan’s Reglan is corn free. Isn’t it ironic when Prevacid, used to stop reflux, could actually cause more reflux? The doctor prescribed Nexium (contains gelatin) for Dax right after I had just explained the sulfite issues to him. It made me so mad.

You are such a great mom. I know calling all the companies for ingredients isn’t fun. It is well worth the trouble it if helps though. I wanted to pass along a couple of links just in case you decide to stop the Neocate for a little while. These are recipes for making infant formula at home. I have never tried these or any other. Dax just had to drink my sulfite breast milk because I didn’t know better. In the first recipe, the wheat germ obviously would need to be substituted, or omitted.

http://reliableanswers.com/med/homemade_baby_formula.asp

In the next one there are many choices. One of them is dairy-free.

http://www.beinghealthynaturally.com/child...fantformula.htm

I also wanted to mention that usually people can handle very tiny amounts of sulfite even with a sulfite sensitivity. For instance, if Dax takes any amount of gelatin, corn syrup, or cornstarch (which have high sulfite content) he throws it up, but he is fine taking ½ tsp. children’s liquid claritin (contains sorbitol (low sulfite content) as third to last ingredient). This is half of the daily recommended dose. And I never give it to him two days in a row.

For us it was trial and error. I hope this helps a little.

Rhonda

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Robbin,

You are amazing. I can’t imaging dealing with this for 13 years, I had a hard time with 2½ years. It was so much easier for me once I knew the cause. I can see why your son would be hesitant to try fruit again. How much does he have to eat to get the reaction? Is it one piece, or the whole fruit? Pineapples and pears are fruits that we don’t seem to need to buy organic. Has your son had problems with prunes or dates? These are also foods we don’t have problems with. We eat lots of dates for magnesium, and we use a liquid vitamin-B complex.

From what I’ve been reading, I think you are right about your son having a sulfite sensitivity. There are many sites that list swelling, and hives as symptoms of sulfite sensitivity. I just included one here. (You may have already read it)

This is from: http://allergies.about.com/od/sulfitetesti...sulfites_co.htm

Personal Experiences From Readers

“I became sensitive to sulfites about two years ago. I had several reactions where my face and neck would swell up with hives and turn bright red. This was accompanied by a mild constriction of the throat, swollen tongue, headaches and a general feeling of exhaustion. These reactions would last for several days. After no help from my doctors, I did my own research for both diagnosis and treatment.

I am now able to consume very small amounts of sulfites by using a megadose (2000 mcg daily for maintenance) of liquid vitamin B-12. I also eat a mostly organic diet, consume very little processed food, drink a lot of water and get acupuncture twice a month for detoxification.

I am constantly appalled at how little the medical community knows about sulfite sensitivity and how little they seem to care.

Avoidance is very difficult as sulfites are in nearly all processed foods in some form or another. They are also present in many medications, both OTC and prescription. I had a pharmacist tell me the other day that "there are no sulfites in medications, it is just something that people put on salad bars." This ignorance is reprehensible.”

My thoughts and prayers are with you and your family. I know how tough it is to do food testing. Please let me know how you are doing with it.

Rhonda

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Rhonda.

Well, I heard back from Neocate. They said the only ingredient that has sufites is the Maltodextrin. It has 10 mg/kg. There isn't much maltodextrin in the formula, so they said it's only a minimal amount. What do you think about it? They also said the corn syrup didn't have any. Is this possible? I'm confused as to if some corn syrup has it and some doesn't. looked at the formula links, but most have other things that Meg can't tolerate. I just don't know what to do. the more I read, the more I think this is a possibility, though.

How long did Dax have to be sulfite free before you saw improvements?

Food questions:

What about canned fruit that's peeled. I'm leary of it, but trying to figure out what I can eat. I'm already dairy, gluten and egg free, so I don't eat many processed foods. We can't afford a lot of organic fruit right now, but I can just skip those that I can't peel. Plus we have an apple tree that is coming in and a pear tree that will be ready next month for picking. I KNOW they don't have sulfites! I don't drink wine, so that's not a problem. I don't eat jello, so that's ok too. what about spices? Would they have sulfites as a preservative? I cook most of our meals, so I think most of what I"m doing is ok, but just a few worry me, like canned speghetti sauce? I bet it's off limits too. It's so hard to know. Did you call manufacturers to get sulfite contents or what?

Sorry for all the questions. I am forever indebted to you for your help!!!

EDIT:

Just got off the phone with the pharmacist and he said all her meds are sulfite free, but I'm not sure if I believe him. He checked the clinical pharmocology database and said it would be listed. He said it would be listed at sulfonamides. ???????? He said prevacid was clear too. I'm really confused! He sounded like he knew what he was talking about, but I doubt everyone these days.......

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Hi Tanya,

I am so happy that you are looking into this. Sulfites are as unknown now as celiac disease was when my mother diagnosed me. Doctors couldn’t help me because they just didn’t know (I went through 6 years of doctor appointments and misdiagnosis). My mother searched everywhere, reading everything she could (before we could learn so easily on the internet). One day in a book in the health food store, she read a description of celiac disease. It fit me exactly. I kept a food journal and listed every ingredient I ate and how I felt. My mother saved my life. So, this is how I diagnosed Dax with sulfites sensitivity. The good thing is that when you have to list every ingredient in every food you eat, you end up making meals that are very simple, very healthy and very tasty.

Most people don’t know what sulfites are. Medical professionals included. The only people who know seem to be are the ones who have sulfite problems. The best way to deal with this is to know what contains sulfites and then ask about these specific things. Say, “Does your product contain any corn products or any gelatin?” The person will then read the list and look for “corn” and “gelatin”. If you were to ask about sulfites, they would read the list and look for “sulfites” miss the cornstarch, corn syrup, and gelatin and tell you it is safe. Or what has happened to me is they read sulfates (a not i) and say it is bad when it is not. If they say yes it has corn products, ask which ones.

My husband, Wade, wanted to add this editorial….

What we find remarkable, is that even people that work in the call centers of the food and drug companies often don’t know about sulfites, or other nasty chemicals used in the processes of making their foods or drugs. These people are responsible for answering questions regarding their company’s products, things like ingredients, allergens, etc., and they don’t even know!

Imagine our surprise when we wondered why the shots Dax received made him react horribly, only to find out many shots contain gelatin (lots of sulfites) or even sulfites listed as ingredients. What we thought should help him was hurting him.

Celiacs run into this problem with ignorance all the time. For example, if you told someone in a restaurant that you were celiac and you couldn’t eat any thing that had “gluten” in it, they could feasibly look at the ingredients on the basic white bread package (white flour, water, milk, butter, sugar, yeast, salt), and come back to you and honestly say, “there’s no gluten listed in the ingredients, it’s okay for you.” Now this sounds ridiculous, right? Well, we’ve had situations where servers have brought food to our table, and we’ve asked them to check if the ingredient list contained “wheat” (because we knew they likely didn’t know about gluten) and they’ve come back and literally said “There’s no wheat flour in this food, it’s just white flour.” Sulfites are even more hidden than gluten, so you have to learn what foods use sulfites in their processing, because even though so many people are allergic to sulfites, the food preservative industry is addicted to the stuff and so the government can’t beat the lobbies that want to continue using it. Sulfites are some of the best known compounds for keeping food from going bad, or from keeping things looking fresh, so the food industry loves the stuff. Who cares if a few people get sick, right?

Is Megan on Neocate Pediatric E028? There are a few different types of Neocate, but they all have sulfites in their first or second ingredient (in the form of corn syrup solids, or maltodextrin). You mentioned that they said “There isn't much maltodextrin in the formula, so they said it's only a minimal amount”, but did the person at Neocate tell you that maltodextrin was the second ingredient? (water, maltodextrin, then sucrose) That means there’s a lot of maltodextrin. Taste how sweet it is. There is more maltodextrin than sugar. Do a Google search on “Neocate ingredients”, click on the first option, then find the type of Neocate she is on. The list of ingredients is at the bottom of the page. So while 10mg/kg of sulfite in the maltodextrin might not seem like much, we know that it’s a concentration level that would make Dax vomit immediately.

All corn syrup contains sulfites. (They use sulfite containing chemicals to get the sugars out of the corn solids, but companies aren’t required by law to list processing chemicals) Corn syrup solids are about 14 parts per million (ppm). Maltodextrin is about 18 ppm. You don’t need to worry about how many ppm they are, I just wanted to give you an idea of how much each one contains. By law, if a product contains 10 ppm or more, it has to be labeled “contains sulfites”. If they dilute the sulfites to less than 10 ppm, they don’t have say “contains sulfites”.

What about a rice, almond, or soy milk to mix with your breast milk? If she does have a sulfite sensitivity she will gain the most weight not vomiting. They make a lot of enriched milk substitutes.

I’m sure the pharmacist meant well but…sulfonamides are a type of antibiotic… and sulfonamides have nothing to do with sulfites. Of course prevacid doesn’t contain antibiotics. He can’t help you because he doesn’t know. Do a Google search on “prevacid inactive ingredients” click on the first one (rxlist), at the bottom of the page you will see all of the ingredients. “Starch” is listed (usually this means corn since corn is the cheapest), and sulfites are used in processing starches because it helps break down the corn and helps keep the starch that nice, white color. Notice also that in “[inactive ingredients]” “gelatin” is listed. There isn’t very much gelatin in the capsule, but gelatin is 45 ppm.

Dax was never off sulfites while I was breastfeeding, so I don’t know for sure how this affects the timing. I seems to take Dax two weeks to get all the sulfites out of his body. This doesn’t mean that he vomits the whole time, but he does cough, gag, snore, and sound congested. Also, during the two weeks, he gets sick from even less sulfites than usual. Dax stops vomiting once 24 hrs has passed after eating sulfites. But here’s the good news; Dax’s body seems to be pretty good at purging the sulfite from his system. Even though it sometimes took a while to get rid of all the symptoms, he wouldn’t vomit (much) after 24 hours if he wasn’t getting more sulfites. The implication for Dax was that once we figured out what foods had sulfite and what foods didn’t, he started gaining weight almost immediately.

About foods. We never eat canned fruit because it always makes Dax sick (it usually has a lot of corn syrup in the canning liquid). Do you have a Costco near you? We get inexpensive organic carrots and organic lettuce there. Here is a list of fruit that should be safe even conventionally grown. This is based on Dax’s response. Megan may be more or less sensitive.

• Pineapple

• Bananas

• Oranges

• Mangos

• Papaya (also loaded with enzymes that are good for celiacs)

• Grapefruit

• Apples (peeled)

• Fresh lemons and limes (lemonade or limeade)

• Pears

• Melons – watermelon, cantelope, honeydew, any other

• Blueberries

• Kiwi

Vegetables

• Zuchini squash

• Yellow sqash

• Potatoes

• Yams / Sweet potaotes

• Onions

• Brocolli

• Cauliflower

• Cabbage

• Mushrooms

• Cucumbers

• Winter squash

Sauces

• Olive Oil

• Tamari sauce – San-J wheat free tamari

• Spagetti sauce – Classico tomato basil (make sure there is no wine, corn syrup, or cheese if you use another kind)

• Mustard – Gulden’s spicy brown mustard (make sure it doesn’t contain wine if you use a different kind)

• Salsa – Tostito’s Restaurant Style Medium salsa

• Hummus – Make sure there is no lemon juice concentrate (If you like hummus, I will share a really great recipe – easy to make if you have a good blender)

• Tomato sauce – (make sure there is no corn syrup)

• Salad dressing – Annies Honey mustard (make sure there is no wine, balsamic vinegar, cornstarch, cornsyrup if you get another kind) (you will have to go to a health food store probably)

• Honey

• Real maple syrup (the fake stuff is almost all corn syrup)

Dairy Substitues (vegan)

• Tofutti cream cheese (this tastes so good my husband likes it and he hates the taste of soy)

• Soy Dream soymilk – original enriched, vanilla enriched

• Silk soy milk (vanilla and plain)

• Silk soy yogurt (vanilla, plain, blueberry, peach)(Don’t get ones colored with juice concentrates, they almost always have sulftites) (other brands thicken with cornstarch)

• Earth Balance buttery sticks / buttery spread, shortening

Canned food

• Hatch green chilis

• Beans (make sure they don’t say sulfites, the light color beans are sometimes preserved with sulfites – especially chick peas, great northers, white, and butter beans)

• Coconut milk – Thai kitchen (most others say sulfite or potassium metabisulfite in the ingredients)

Meat / Soy

• Tofu – White Wave is what we use

• Red Meat – We are vegatarian, so I don’t have much knowledge here. Make sure there is no wine, cornsyrup, or molasses. Shop where you know it is fresh and where you can see what they are doing. Costco seems like a good place to go because they go through their meat to fast. Lunch meats are loaded with sulfites.

• White meat – I have no idea

• Seafood – don’t eat this while you are doing your trial. This stuff is usually loaded with sulfites (or go fishing yourself). The cheaper stuff is especially bad, and the fake crab meat often contains ungodly amounts of sulfites.

• Tofu Pups are gluten free, and sulfite free made of soy (and even my husband will eat them)

• Soyrizo – chorizo substitute gluten free, vegan sulfite free (my husband loves this stuff – he is usually a complete carnivore)

• Cheese – Vegan, gluten free, sulfite free american flavor soy slices (purple package, made by galaxy nutritional foods)

Other

• Pasta – Tinkyada rice pasta (they make fun shapes pasta now)

• Cornmeal (make sure there’s no cornstarch added)

• Masa specially prepared cornmeal for tamales, and tortillas

• Lays potato chips

• Cornchips (unflavored)

• Nuts (unflavored)

• Unsulfered coconut (make sure it says unsulfered)

• Unsulfered molasses (make sure it says unsulfered)

• Spices (we use lots of spices and haven’t had any problems)

• Sugar (we only eat sugar in cakes, cookies, etc. and haven’t had any problem)

• Caramel color (type 1 & 3 are okay, type 2 & 4 are loaded with sulfites – it’s rare that a company will tell you what they use – when they do, you can believe them, if they don’t, assume it’s bad)

Please don't be sorry for asking questions. I am happy that you are.

Rhonda

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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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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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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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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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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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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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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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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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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!!!!

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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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