Michelle1234

Thanks for the thoughts. I am not reactive to soy. However the thought did cross my mind that maybe it was something I ate earlier in the day. I went to the Denver Celiac Gluten Free fair which is always a dicey proposition for me because I do react badly to fake sugars. I also tend to try not to buy thing with complicated ingredients list that contain chemical sounding words or words I don't know. However at the fair it is so crowded that it is hard to query each vendor as to what is in their product. I generally try to not sample too much, as many of the products are loaded with sugar and chemicals. But I did try a few new things and as usual most were not very good but they were items I had seen in the store and wondered about. At least I saved myself some $s there. They gave you a goody bag with products to take home so I tried a few of those. I was home by noon and tried the chicken for dinner so at least 5 hrs had passed.

The reason I'm so suspicious of this product is that I think it used to be marketed with out the Gluten Free label. I'm wondering if they didn't just change the ingredient list a bit, slap on a gluten free label and not do anything about washing the lines or testing the end product. I have never in all my 5+ years of being gluten free had this reaction to anything. It literally felt like there was a riot going on in my gut and the weird thing was it started after just a few bites. Normally if I get a cross contamination reaction it is 20 min. after I eat and you can practically set your watch by it.

I have bought lots of gluten free items from Costco with no problems. On a recent trip I found their Broccoli Cheddar Stuffed Chicken Breast labeled Gluten Free. It has alot of ingredients and I normally don't buy anything that complicated but decided to give it a try because it was new. I have never been so sick. My husband who does not have a gluten problem had no problem, even finishing my plate for me after I ran to the rest room. My intestines were in knots. I tried my usual digestive enzymes (Gluten Ease & Digest Spectrum) with not much result when usually they are fabulous about helping with cross contamination. Next I took some probiotics (pearls Elite), again no improvement. Eventually I took a product called CeliacAid which calmed things down enough for me to function. I have never had such a violent and painful reaction. I can only think that this product somehow has alot of gluten in it, maybe lines not cleaned when they switched to a gluten free recipe. I'm still trying to contact Costco to let them know but thought I'd put a warning on the board to help someone else avoid this product.

I'm not a medical expert so cannot tell you what to do. But in my own personal experience I developed a bunch of food allergies after being gluten free for 5 yrs. I saw a good holistic Dr. who did some expensive test and determined I had an internal yeast infection along with not enough of one strain of probiotics. After 3 mths of not eating all the food allergy items (including milk, egg, meats, veggies, fruits, nuts) and taking the supplements I can eat all the foods again with no problems. If your daughter has been eating gluten for the last 4 years while she has had problems with it she may have developed pretty sever other gut complications. I don't bother fighting with Drs. If they can't help I accept their limitations and move on until I find someone who can provide some assistance with my situation. In my case it was a holistic medical Dr who practices both eastern and western medicine.

Your very welcome! I think you will have a great time. Cruising and RV travel are two of the best ways a celiac can travel and get great food. One thing to remember is that your on vacation. If you run into a restaurant manager, head waiter or chef that isn't cooperative or knowledgeable switch venues. I've had great people in all different venues but not everyone has been great every time. Sometimes the main dining room is great. Sometimes the head chef in the buffet is awesome. Sometimes a specialty restaurant manager goes the extra mile. But these people are just people and their knowledge level varies. It isn't your job to get them up to snuff on celiac. The ship will have plenty of different food venues so don't get stuck in the trap of trying to change the world. Also while I usually shy away from buffets check out the one on your ship and see if they have any areas of food where the celiac safe food is concentrated and there are no cc worries nearby. But don't risk eating anything adjacent to or in front of anything with gluten. Sometimes if I want something that is in this situation like a hard boiled egg in front of the pancakes or grilled chicken that has gravy already on it I ask a manager and they have always been happy to go to the back and get one right from the kitchen.

I have cruised around the world gluten free. Also extensively in Europe and the Mediterranean. Over 150 days gluten free cruising. You will have no problem with sealed prepackaged food. Even places that didn't want the prepackaged nuts like Australia I said I needed it for a food allergy and pointed to the gluten free on the label. Not one time was my prepackaged sealed food confiscated. My favorites were the KIND bars. They made an excellent meal replacement. On some shore excursions I would ask the guide to check if the restaurant could do a gluten free meal. Many could so then I used my own judgement to determine if they knew what they were talking about. I also would bring prepackaged Ian's cookies. Another type of bar I brought was the Envirokidz crispy rice bars.

Keep in mind you may not take off anything that is not prepackaged and sealed. So the cruise line is right in saying you can't take crackers if your bringing them wrapped up in a napkin or a ziplock.

When they ask I always self identified and said I had prepackaged food due to a food allergy to gluten. And I showed them the food. I didn't try to sneak anything by.

If you've never tried them I highly recommend you take Gluten Ease digestive enzymes on the ship with your breakfast to avoid any reactions from accidental cross contamination. Would hate to be on a bus and need to find a rest room for a gluten emergency.

When I was younger I had endometriosis really bad. Drs were no help. As I got older I had really heavy, long (7 days) periods but was able to manage the pain better with Boiron Cyclease. After I got ovarian cysts I started taking DIM Plus and all of a sudden had regular 4 day periods that weren't very heavy. Your mileage may vary but I thought I'd throw it out there.

I've had excellent results with mine. Here are some examples.

Had chest pain. Went to ER. Did full cardiac testing. Eventually said you have GERD here take this prilosec. No testing to diagnose GERD, just eliminated cardiac possibilities.

I didn't believe the diagnosis and when I did research on prilosec I learned about the very serious side effects.

I did some research and went to a holistic MD. This was the first time I had seen one.

He did battery of tests. Came up with gluten intolerance. Went gluten free and chest pain went away.

Holistic Dr. is out of network for my insurance and so I use regular Dr. for yearly physicals etc.

2nd example, years later.

Regular physician diagnosed ovarian cyst through ultrasound. Had lower pain in abdomen. Recommended seeing how it went and retesting after 6 or 8 weeks. Go to hospital if it ruptures. Maybe surgery in the future. Went to holistic Dr. Recommended some home care procedures with castor oil packs and DIM for estrogen metabolism. Symptoms started to go away almost immediately.

3rd example. Full body itchy white pustules. Regular Dr. did test for food allergies. Tested positive for many types of diary, meat, eggs, vegetables, fruits and grains. Regular Dr. said don't eat these. But this left me very little I could eat and I had stomach pain as well as skin itching that only got worse if I itched it. Went to holistic Dr. who did a battery of test, full digestive profile. Determined I had yeast infection in the gut, a lack of all digestive enzymes and was low on one major probiotic strain. Recommended fairly pricey set of supplements for 8 weeks. Took them and can now eat all allergic foods again with no problems.

Alot depends on the quality of the Dr. you get but also on you and your willingness/interest to research for yourself so you can decide if what your being told makes any sense (same thing applies to regular Drs). I have also had no problem when something the holistic Dr. recommends doesn't work telling him it isn't working so he can recommend something else. I don't always do exactly what he tells me but I do research everything he recommends and then make up my own mind as to whether it seems like it will be helpful. However I also do this with the regular Drs.

Thanks for posting. When they first brought the cinnamon rolls out they were excellent, soft gooey and had a white frosting. They even looked more like cinnamon rolls. Then the switched them to the muffin cooking format with the strange little sugar and cinnamon packets and they weren't as good. Sounds like maybe they went back to the old recipe for at least the rolls themselves. I will have to try the new ones.

Hi Jenny,

I also developed a bunch of food allergies after 5 yrs on a gluten free diet. I got a head to toe skin reaction with white pustules that itched like crazy and my stomach hurt any time I ate. My testing showed I was reacting to cow dairy, goat dairy, egg (both whites and yolks), beef, lamb, rice, almond, peanut, avocado, blueberry, pineapple, red grape, asparagus, green been, green pepper, kidney bean and mushroom. And I got the simple food panel! No telling how many it would be if they had tested for the advanced panel. My Dr. ran a digestive profile with more info than I can begin to describe and we solved the problem with supplements and staying completely off the reactive food for 3 months. I can now eat all of it again. Basically I had a yeast problem and was low on one strain of probiotic.

Since you don't have a Dr. I can tell you about the supplements I took. But they aren't cheap. I looked on the Internet for the best price.

Allimax - 2 times per day for 8 weeks. With food. This was to take care of a yeast infection.

Candibactin BR - 2 times per day for 8 weeks. With food. This was to take care of a yeast infection and bad bacteria.

These two can be taken together.

The probiotic I needed more of was Ultra Bifidus DF (DF stands for dairy free). 1/2 tsp per day. But I didn't really take it every day because it is killed by the above two items so it can't be taken with them. Instead I tended to go with a broad base probiotic that I usually take and it was easier for me to remember to do it. I took it in the evening while doing the first two with breakfast and lunch.

He also recommended I take Saccharomyces Boulardii. 3 times per day. Also can't take it with the first two as it is supposedly a good yeast that he was replacing the bad yeast with. I couldn't really figure out how to work it in my schedule so did not take it most days.

After 8 weeks of doing this and staying off the offending foods for 3 months I reintroduced the foods and have had no problem with them. I think the first two supplements were the key. I also took and continue to take Digest Spectrum which is a broad base digestive enzyme with every meal. As mentioned above I also took and continue to take a good probiotic with the meal I did not take the supplements with.

Good luck!

Michelle

I react to vaccines with formaldehyde and thimerosol (mercury). Try to see if there are alternatives to the ones recommended if they have these ingredients. For instance for the flu vaccine there is usually a thimerosol free one available but I either have to get it from a specialty travel clinic or a Dr. who gets them in for their patients specifically. Most of the commonly available ones contain thimerosol. Thimerosol is also a common preservative in eye drops which is where I first found out about my reaction to it.

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Open Original Shared Link

I think I was able to get all the vaccines except the second hepatitus A one since I had a reaction to the first. Spacing them out is a good idea so your not hitting your body with trying to develop the immune reaction to so many things at once as well as dealing with the preservatives in the vaccine.

I'm not sure if anyone posted this but the flavorings in the polishing compound often contain gluten. Plain pumice does not so ask for that. If they don't have it don't let them polish your teeth.

So it helped but you still got CC'd on occasion? I'm just trying to understand what the GlutenEase limitations are. I hope your cruise was fun!

Dr Wise's stuff is homeopathic, right?

Hi Skylark,

Yes on occasion I get CC'd. Mostly it seemed to be when I had thought I had a good reliable source of non-gluten food. For instance I ordered hard boiled eggs for breakfast from room service. I explained how I needed mine right out of the kitchen and not from the buffet where the hard boiled eggs were in front of the pancakes. The cruise was for 107 days so I would go along for months with no problems with the hard boiled eggs and I wouldn't be taking the GlutenEase with breakfast. Then the room service staff would be rotated off the ship and all of a sudden unknown to me I was ordering from a different person who would get the eggs from the buffet. Not a good reaction on my part but I also had not taken the GlutenEase so it can't be faulted. Usually any reaction I get is because I forget to take the GlutenEase and then I have to take it after the fact. But surprisingly it works really well after the fact. Without it I will be needing to find a restroom in an emergency fashion every 10 min. If I forget to take it and then have an emergency I can take a couple of pills and then be fine. No more problems.

Yes the Dr. Wise Gluten Relief is homeopathic. I've had great success with Cold Calm for colds, Oscillococcinum for flu and several other homeopathic remedies so I thought I'd give it a try. I'm very happy I did as I can't believe how good my stools/bowel movements are. I feel like I'm a normal person for the first time in over 5 years. It is about a 3 month treatment though and I'm only a couple of weeks into it. I also tried their Glandular Calm which did not work well for me. I didn't like the side effects so I e-mailed them about it and they offered to refund my money for it.

I have seen digestive enzymes mentioned as a possible treatment for gluten side effects. I went to the er last night and the doctor there had never heard of them. What are they? Do they help? Do you have to take them with probiotics? Are they safe for advance celiac?

I've had really good luck taking GlutenEase when eating out. I went from getting cross contamination effects almost all the time to almost never. I had gotten to where I never wanted to eat out but once I started taking GlutenEase with any meal that I thought might have cross contamination I got so confident that I took a cruise around the world and had very few instances of glutening (that was back in 2009).

About 4 mths ago I started taking Digest Spectrum also as I was tested by my Dr. when I developed a broad spectrum of food intolerances (egg, cow dairy, goat dairy, beef, lamb, almonds, peanuts, green beans, cucumber, asparagus, red grapes etc) and was found to have no digestive enzymes of my own in my stomach. He put me on a 3 mth coarse of supplements tailored to the findings in my digestive profile so I am now thankfully through that episode and am again fine with all those foods. I've so far kept up the Digest Spectrum because it helps with all types of foods in addition to my probiotics to try and keep myself from getting that bad again. About two weeks ago I started taking a new supplement called Dr. Wises Gluten Relief and that seems to have really straightened out my digestive track. Now that is something else! My bowel movements are on-time and completely normal with no emergency runs to the bathroom. This is also about a 3 month course. I'm still taking the GlutenEase for any meal out of the house and the Digest Spectrum with every meal. No chest pains, no stomach pains, no emergency runs to the bathroom. I'm a happy camper. About 4 mths ago I could eat nothing with out a reaction. I've been gluten free for 5 years but somehow my body developed all these new food intolerances. Thankfully I've got a good Dr. who got me over that hump but most Drs are clueless. You have to really search around for one that will understand what is going on and help you.

Good for you for finding the solution.

We feed a combination of raw, canned, and people food. We also take in foster dogs. They do very well on the combined diet. I think if you feed your dog a variety of foods they will be getting a good balanced diet. When buying commercial we try to only buy grain free although sometimes we will pick something with some rice in it. Dogs aren't designed for grains so we try not to give them any. When we adopt out a foster we do our best to make sure they feed a high quality diet. Whenever someone does switch we hear good reports, usually of their other dog having health problems that clear up.

If a person only ate cereal 3x a day, for a year and then you fed them steak and baked potato it would upset their stomach. That is what happens to dogs who only get one brand of dry dog chow. Also by feeding multiple brands they are getting different protein sources, different veggies and other nutrients. It mimics a more natural diet and helps avoid them developing allergies to the foods they are eating over time. I suggest you have a rotation of a couple of different types of dog food, trying canned and other protein sources. When you get the more natural dog foods they don't have the heavy duty preservatives that the cheap brands do so buy smaller bags that you use up faster. Also check the date on the bag and get the freshest you can. If you are able add in people food and canned food so your dog gets used to variety. In the long run it is alot healthier for them

Here is a video on how to choose a great dog food.

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And here is a link to lists of recommended dog foods.

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I would say yes. Try wearing a pair of glasses in the shower and see if they don't get wet with soap and shampoo on them. They are just a few inches from your lips. I had to change out all personal products, laundry detergent, pet shampoo etc.

Good luck,

Michelle

I'm glad their working on something and having some success. Thanks for posting the link.

Michelle

I take them both regularly to avoid gluten cc from restaurant meals. To my knowledge I have never reacted to the enzymes and they have dramatically reduced gluten cc reactions for me. You may want to try a different brand of digestive enzymes and see if you have the same reaction.

Good luck finding out the problem.

I just bought these, Jovial Fig Fruit Filled Cookies, at the local health food store (Vitamin Cottage).

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They taste just a tiny bit better than I remember Fig Newtons tasting. I used to love Fig Newtons. Glad to have a replacement that is yummy. I thought I'd share my review as I know how hard it is to spend good money on a new product, not knowing if it is good or not.

Sounds awful. If you aren't taking probiotics you should start right away. And not by eating yogurt or some other fluffy product. You need the high dosage concentrated type to repopulate your gut after the strong antibiotics.

Also check out Open Original Shared Link for more information on side effects of the antibiotic you were taking.

Well worth checking out anything your prescribed to see if the side effects are worth it. There are antibiotics I know I tolerate well, as well as pain drugs. If I'm prescribed something outside that circle I check askapatient.com to see what I would be getting myself into.

Since you asked for alternative suggestions. If you don't have a holistic Dr. perhaps try finding a reputable one in your area and consulting them. They may have good solutions that the Mayo clinic hasn't come up with as they have a wider set of solutions available to them.

Good luck!

This is just a shot in the dark but I'm wondering if you restricted your diet so much that you developed food allergies to most of the stuff you eat. I recently had a huge skin flair up and when they did a food allergy test I tested positive for almost everything I eat. As a result I switched to having things I don't normally eat. For example I would eat Applegate Farms chicken sausage and a plain baked potato for breakfast along with digestive enzymes, probiotics, DGL and L-glutamine (these last two to help heal my gut). Surprisingly my stomach did not bloat and I didn't have stomach pain. Then for lunch I had fish and cauliflower french fries (these are cauliflower and potato in a fry shape that you bake). Dinner was then Applegate Farms bacon and a plain baked potato. I had never had so much animal fat and it surprised the heck out of me but my stomach tolerated it so much better than my healthier diet of raw veggies, lean meat, dairy, non-gluten grains and fruit.

Just thought I'd throw it out there. I know I can't eat this way for a long period but after my stomach started to feel better for a few days I added things back in like cooked veggies, rice, soy and an occasional piece of fruit that were not shown to be allergies in my allergy panel.

Why this weird diet helped me I have no idea. The only reason I chose selections with animal fat in them is that my mom who has been having trouble with her stomach said she had tried every weird diet under the sun and got some relief when she upped her fat intake. Since I was already so miserable I gave it a shot and it worked for me. Or it could have been that it was just plain and simple enough that it didn't bother my stomach. My vet always prescribed boiled beef and rice to my dogs when they had nausea or upset stomachs. Maybe this was just the human version of that. I couldn't do rice since it showed up on my allergy panel but potato was one that I didn't show an allergy to. Also I couldn't do beef since that also showed up on my allergy panel. Fish, chicken and pork were all shown to be OK for me.

I agree with the above poster though. There is something underlying the whole thing that you need to work with a Dr. on. My Dr. is running a bunch of tests on me to see why I have all these new food intolerances.

Take a look at the side effects and experiences of others taking Ativan.

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You can also use askapatient to look up some of the other meds your son has been on and see if some of the symptoms he has are side effects from the drugs.

Some things to try for your child that should help heal his gut.

Probiotics to replace the good bacteria that the antibiotics have killed. Anytime anyone, including pets, takes antibiotics it is important to follow up with probiotics to restore good gut bacteria.

Digestive enzymes to help him digest his food.

I think both digestive enzymes and probiotics should both be OK for a child.

I also take

DGL (Deglycyrrhizinated Licorice Root) to help the stomach lining heal.

L-Glutamine is an amino acid that helps support the integrity of the intestinal lining.

However since your son is a child it would be good to get a holistic Dr's opinions of whether these two are OK for him.

All these are available at a health food store.

Regards,

Michelle

This is the test my Dr. did. You basically collect a stool sample at home and send it in.

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You can read their info and see if it makes sense to you. A quote from the web site:

"EnteroLab has developed a unique screening test for gluten sensitivity, as well as for many other antigenic food sensitivities, that is more sensitive and specific than tests in current use (U.S. and International patents issued). Our method utilizes stool rather than blood as the testing substrate; the rationale of using stool rather than blood for testing for food sensitivity is that immunologic reactions to proteins in the diet that cause these reactions are centered within the intestinal tract and not in the blood. "

Their FAQ section talks in more detail about how blood vs. stool testing is different and can have different results.

Michelle

I suggest taking your child to a holistic Dr. Battling with a physician who doesn't really know what is going on does more damage to your child as they will just give you meds or guess at what is going on. My problem started with chest pains which I went to the emergency room for. They did all sorts of heart tests and since my heart was fine said you have GERD, take these medications. I went on askapatient.com and saw that those anti GERD meds cause more problems than they solve and the side effects are quite serious. So I didn't take them. Instead I found a holistic Dr. and tasked them with finding out what was wrong. They ran a set of test and the only thing wrong with me was gluten intolerance. I was a few points from Celiac and had the gene so they said I needed to go gluten free. They also gave me supplements to help rebuild my GI tract. It took about six months to a year to get everything healed up again. Your son likely has alot of damage from the meds he has been taken. A holistic Dr. will do the right tests without your having to know what they are and will help prescribe things that can help him heal. Mine doesn't take insurance but does give me receipts to submit myself. It is well worth it to not have to deal with a clueless Dr.

Good luck!

Michelle

My best tactic is to eat a huge meal before any type of potluck. That way when people ask why I'm not eating I can say "Oh, I just ate a huge meal and I'm stuffed". They can see on my face it is true. If I say I have food allergies everyone wants to know to what and what my reactions are.

I don't mind anyone knowing I can't eat gluten but it does get old after a while answering questions so sometimes I just don't mention it. Also some of the very well meaning people I know try to bring gluten free options but cross contamination is such a strong learning curve that we've all been through that it is unlikely that anyone gets it right on their first try. Nothing worse than having to run off because you got sick at a social event. Especially if it is the food served that made you sick. So I just avoid the food completely. I also follow the tip give above about treating it like a social situation where you move from table to table and not settle in at one where it is obvious that you aren't eating.

Good luck!

Michelle

You can order a gluten free stuffing mix from Open Original Shared Link

They do mail orders but I don't think they take orders on the internet. You have to call. They come out with the stuffing mix in local Colorado stores every year around the holiday's and I just saw it yesterday so even though it isn't listed right now on the Internet I know it is available. And it is REALLY GOOD! If you order you may want to get more than one since once you try it you will want to have it for Christmas too.

Regards,

Michelle