Michelle1234

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

I suggest getting some gluten digestive enzymes and taking them before every meal. I take Digest Gold and Gluten Ease before every meal when traveling as they help with cross contamination. I also take along some probiotics as they are good for the gut and help repopulate good bacteria if you get some bad food or help your immune system out if it takes a hit from being glutened. I use the called Pearls as it doesn't need to be refrigerated.

If you go over to the travel board on this forum you can search on Royal Caribbean. Alot depends on your particular chef/head waiter. You could get a good one who knows what is going on or a clueless one. I suggest that if something isn't working don't keep banging your head against the wall. Your on vacation. Switch venues. If the main dining room doesn't work, try the chef in the buffet. If that doesn't work try the chef in the specialty restaurant. Chances are one will have a clue and be able to work with and help you get safe food. The newer ships often have dedicated allergy meal preparation areas. You don't mention what ship you are on but if you aren't locked in select a newer ship.

Take some snack bars (prepackaged and sealed) for shore excursions so you have something to eat. I like the Kind bars.

If your not locked in to Royal Caribbean then I think the gold standard for gluten free cruising is probably Disney. I've never read anyone say anything bad about them with gluten free meals. I think the newer Celebrity Ships are also very good. I spent 30 days on one and had great gluten free food. Princess did a nice job when I was on them also. I've read good things about NCL and Carnival. So those are also options. I've read some negative reviews of Holland America and Royal Caribbean. But that isn't to say you couldn't have a great experience on them.

Edit: I've spent over 130 days on cruise ships as a gluten free cruiser. You will probably have a great time if you manage what ever situation the cruise ship throws at you correctly. Remember trying to teach the cruise staff won't get you an enjoyable cruise. Lots of chefs from other countries are very well versed in gluten free. If the one you get isn't try another.

Michelle

Don't know if this will help you but my Dr. gave me Glutagenics to help my stomach heal when I was first diagnosed. Take a look at the reviews and see what you think.

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I found the taste to be not very good so instead take DGL pills. DGL is one of the main ingredients. DGL=Deglycyrrhizinized Licorice Root.

Michelle

Take a look at the results yourself. My holistic Dr. showed me my results. I was one or two points from being a Celiac but was at the high end of the intolerance range. He said it had to be treated like Celiac so I went completely gluten free. From which I learned I was highly sensitive to it and just the smallest amount gives me diarrhea. If your Dr. isn't as knowledgeable then they may not interpret the results right. He said it would take about 6 months to a year for my gut to heal and put me on several supplements including Glutagenics. I got retested at 6 mths and showed I still had gluten problems. However it takes about 6 months to figure out how to get rid of all the gluten. I was like every body else, not understanding cross contamination, getting rid of all gluten products in the home, changing out my cookware etc. In hind sight I kind of think he told me six months to give me hope while really believing it would take a year. I do think I had improvement in my chest pain at about 6 months (maybe a little less).

I think I didn't test as a Celiac because I got diagnosed within a couple of months of my first symptom of chest pain. I felt lucky that I didn't have enough damage and figured I would be able to head off the worst of it. Your young and recently started symptoms so maybe it is the same for you. However 5 years later and despite following a strict gluten free diet I'm starting to develop alot of the problems that I read about on this forum that others have <sigh>.

Edit: Here is a good article that discusses intolerance and celiac.

Open Original Shared Link

Good luck

Michelle

Diagnosed at 39.

Gluten Free for 5 years.

About 6 mths or so for the initial chest pains to go away (that was my only initial symptom).

Within the 6 mths developed diarrhea as my gluten symptom. It appears 20 min. after ingesting any. I have good luck combating it with Gluten Ease and Digest Gold. However since I never purposely digest gluten I only get glutened after cross contamination.

Over the past 5 years have had good periods where I think everything is fine so 100%. However this past summer I started reacting to peanut butter and eggs (maybe at 75%). I thought I was getting cc but just recently had a full skin blow up with little pustules over my entire body (0% - way worse than initial symptoms). Turns out I am now allergic to a ton of things including diary, peanuts and eggs. I get a tight chest, have trouble breathing, my stomach hurts, my stomach is bloated and sometimes the itchy pustules come back. So right now 0%. Something is coming down hard on my immune system so I'm trying to figure out what it is. My first step beyond eliminating the newly allergic things is going to be to remove a metal bridge in my mouth just in case I'm getting reactions to the metal in it.

In summary after 5 years eating gluten free 0%! How depressing is that??? I'm also really tired all the time. Although eating gluten free got rid of my chest pain and staying away from it avoids diarrhea I don't think it ever really made me feel good like some people report because I still had alot of fatigue.

How long did it take to start feeling better? I still feel like shiz and the only thing that I have noticed that has changed 100% is that the eczema on my foot is healing, I don't get dizzy anymore, and that I have lost weight.

When I first went gluten free it took me a long time to ferret out all the hidden sources. And one side effect of going gluten free for me was that I started to get huge reactions to gluten. I didn't even know I had any reaction to it until I got rid of it. Then I started to get diarrhea 20 min. after getting any. Sometimes I get gas or bloating but I'm not so sure now that I'm not reacting to other foods with these symptoms.

Over the last 5 years I've had times I felt pretty good. The chest pain seemed to go away pretty quick but I can't remember how long it took. The holistic Dr. had me taking a bunch of other stomach healing supplements which might still be lurking in my cabinets if I go looking for them.

There were times when I went so long between reactions that I wondered if I was healed. Then somewhere, some how I would get a cross contamination reaction and it makes me feel like my whole system is poisoned. Tired, worn out and it seemed to me to be more likely to be glutened again.

In general I've been pretty fatigued over the last 5 years. Early in the summer I started to react to peanut butter, eggs and soft cheese. I just recently got tested and am now allergic to a bunch of things. I have stomach pain, bloating, gas and tightness in the chest making it feel like it is hard to breath. So I'm on the hunt again as to why, why, why do I have these health problems. I'm zeroing in on a metal bridge that I have in my mouth that I've had for 20 years. Maybe it is poisoning my system with toxic metals?

The two tests I've had were the Cliffords Materials Test

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and the Meridian Valley Labs food allergy test

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But these two things are only telling my how overwhelmed my immune system is. I have to figure out what is overwhelming it. I'm pretty good at buying healthy/organic foods. I check my personal products with the environmental working group.

Open Original Shared Link

Michelle

P.S. Thanks for reminding me about Open Original Shared Link I had used them to check the acid reducers but couldn't find the web site when replying to your post. I book marked it just in case I need it again.

Day 19,

BTW, what do you think about this article stating that GERD is an auto-immune disorder.

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Very interesting article. I think they just don't know. I was diagnosed 5 years ago. But before being diagnosed for gluten intolerance (I was a couple of points from celiac and had the genetic component) I was diagnosed with GERD. However I refused to accept the GERD diagnosis because they were just guessing and telling me to take the very toxic acid reducing pills. That is what caught my eye about your initial post as I almost when down the path you did. My initial symptom was chest pain that I went to the emergency room for. Then after all the heart tests told me I had a healthy heart they said you must have GERD, here are prescriptions for acid reducing pills. Just take them and see if they work. I went on-line to check out what users were reporting and they had horrible side effects so I went to a holistic Dr. instead. I told the holistic Dr. my symptoms and he ordered all sorts of tests to see what was going on. Turned out to be gluten intolerance, one or two points away from Celiac and a genetic marker. So he said to treat it like Celiac. I went off gluten but it took me over 6 mths to get rid of all the sources and figure out how to order food in a restaurant. He also said the acid reducing pills were the wrong thing to take even if you had GERD because you need the acid to digest your food an by taking the pills you were causing your system to generate more acid (or some such thing - its been along time since I talked to him about this).

I just recently started having non gluten reactions (for me) to what appeared to be random foods so got an allergy panel done by my Dr. Turns out that even with being super careful the occasional accident glutening may have caused me to develop a bunch of food allergies. I know there is some other root for my problem though and recently read about a lady who had a tooth implant removed and had an improvement. I have a metal bridge that has been in my mouth for 20 years and in that time I've developed a ton of metal allergies, the gluten intolerance and now the food allergies. Even though it will cost a fortune I'm going to get the bridge removed. Having this auto immune disorder and now all these allergies indicates that my immune system is being overwhelmed. I've got to find the reason for this and get it fixed. I already had all my metal fillings removed back when I was first diagnosed.

I guess the reason I'm telling you all this is that you may want to look for any thing that might be taxing your immune system, including any prescription drugs. I always try to avoid taking any pills as it seems that they cause more problems than they fix.

Good luck!

Michelle

I don't know how accurate it is but I just had a blood test with Meridian Valley Labs because of an extreme skin allergic reaction where I had little white pustules all over my body that itched like crazy. They test for 95 common foods for $140. My results showed strong allergies to cow dairy, casein, egg yolk, egg white, beef, lamb, pineapple, green pepper, kidney bean, almonds and peanuts. I just about keeled over to see all these things on the list. I also have moderate allergies to goats milk, rice, malt, gluten, avocado, blueberry, red grape, asparagus, green bean and mushrooms. The test is not for celiac, they have a different test for that, just for food allergies. So if you really want to know then this may be an easy way. I'm supposed to go off the strong allergy things for three months and then try them one by one to see if I react. The moderates they suggest a 4 day rotation where I get them no more often than once very 4 days. I already know I react strongly to gluten so that isn't on the rotation schedule.

They have an extended food panel test but I didn't take that one. If you look them up on the web you can see what they test for. I think one of the options is to test for both food panels at once. I probably should have done that.

Good luck,

Michelle

Applegate Farms has a great selection of meats that is gluten free. I really like their breakfast sausages in addition to their sliced meat. My King Sooper (Kroger) carries them but they are pricy. They are also at some of the local natural grocery stores so if you have that type of store look there. They don't have a long ingredients list and list gluten free on the packaging. Both of which I like. Another option is Costco. They have a gluten free pre cooked shredded chicken by Del Real. In addition they have gluten free sliced turkey that we buy.

Michelle

Anyways I am just gonna list what I have been eating these past couple of days and see if anything pops out to you:

Fruit Veggie Smoothie - 10 Strawberries, 2 Bananas, 2 Cups of Kale, Ice

Baked Chicken Breast with Ketchup - Chicken Breast(baked), sea salt, pepper, Simply Heinz Ketchup(sugar instead of High Fructose Corn Syrup)

Jennie O Turkey Bacon - Says No Gluten on the back but does have a laundry list of crazy looking chemicals

Homemade Chicken Stir Fry - Baked Chicken Breast, Whole grain brown rice, peas, carrots, San-j soy sauce

Bush's Homestyle Baked Beans - Bush's website say all products are now gluten free. No more wheat flour used.

Coconut Water - 100% Natural, says no gluten on back

Carrots - Just plain carrots as a snack

Have you replaced your blender? There is no way to clean all the gluten out of a blender so you need a brand new one.

Gluten hides in crazy places. Eventually I had to replace all my cooking implements that had a seam or scratch in them. This meant all spatulas, spoons, measuring cups etc. Mixer, toaster, blender etc. all had to go despite our trying to clean them really well. Had to get all new shampoo, soap, conditioner, dish soap, lotion, lip balm, etc. Basically we had to go gluten free as a household. Husband had to also. He was terrible about getting crumbs on the refrigerator handle, microwave handle etc.

Good luck! Your system took a long time getting to where it is and it will probably take some time to get it back into good working order.

Edit: Forgot to mention you may want to try avoiding anything with a crazy long list of ingredients or any words on the ingredient list that you don't understand. Chemicals can do weird things and it makes things easier if you can read and understand the entire list. Try to find Applegate Farms for sliced meat and breakfast sausage. Nice short ingredient list.

Michelle

I've stopped eating at people's houses. Even if they mean well they still get me sick. And they tend to get annoyed when they've specially served cut up fruit just for me and I won't eat it as the knife could have been used to cut bread just before or the cutting surface had crumbs etc. (I did get sick from cut up fruit one time and that ended my eating at someone else's house even if they try hard.) So instead I go out for a big meal just before going to anyone's house. If it is pot luck I bring one item that I can have and then I dive into it before anyone else can so there is no cross contamination with the serving spoon from touching a gluten item on someone else's plate.

Everyone looks a little confused when I say I just ate but it works better for me than getting sick. I make sure to eat a really big meal before going so that I'm convincing when I say I'm full and I'm not tempted when they are urging me to try just a bit of this or that as they know it is gluten free since they prepared it.

In terms of a wedding I did eat successfully at one but the caterer was very knowledgeable about gluten free food. If your going to something like that talk to the caterer and see how knowledgeable they are. If they aren't I would bring my own food and not eat theirs. In my case they served the food themselves, it wasn't self serve. Caters are much better about cleanliness than the general population. The non-gluten items were first in the food line so they were added to plates prior to any gluten items going on them and they had my gluten free bread wrapped up in plastic and set aside. I had a great meal and didn't get sick.

Michelle

I'm also going to chime in on the cooking utensils. I found as I eliminated gluten I got more sensitive. Everything that had a seam in it it had to be replaced, mixer, toaster, pots and pans that had a handle with a seam, spoons, etc. If there was a scratch or crack I replaced that also. After I did that then I no longer got sick from innocent meals in my own house. Also had to have hubby go gluten free as he was incapable of keeping his gluten coated hands from contaminating the microwave, refrigerator and sink handles. He didn't mind as he would rather do that than have me complain at him for spreading crumbs.

Don't forget measuring cups and measuring spoons.

Michelle

If you are looking for a GREAT gluten free cookie mix I highly recommend Authentic Foods Chocolate Chunk Cookie Mix. I liked it much better than the Betty Crocker one. However for cakes and brownies I really like the Betty Crocker mixes.

Open Original Shared Link

Good luck finding your hidden irritant.

Michelle

I think the bread is awful so suggest you save your money but they have alot of other products that are very good.

Michelle

Thanks to everyone for their input.

I just sniffed the three different bottles of olive oil I have. One is Colavita Extra Virgin from Italy, another is Napa Valley Extra Virgin from CA and the third is Kirkland Extra Virgin (from Tuscany). They were in my pantry, not the refrigerator. I've bought olive oil from Italy (while in Italy) and none of these holds a candle to it in terms of taste. I wonder if maybe the shipping process doesn't do well by the oil.

The Napa Valley from California seems to be the best of the bunch in terms of taste. I just opened the Kirkland two days ago and that is what I used in the cake. But it may be "off" based on the smell. I'm just not sure what it should smell like if it goes bad. Costco should take it back. The Colavita probably has been open the longest but doesn't have much smell. I haven't use it much as it doesn't seem to have the great flavor that I get when I buy oil personally in Italy which is why I bought the Napa Valley as I had read that there is sometimes some fraud with exported Italian olive oils where they mix in cheaper oils and I figured the Napa Valley company being in the US would be less likely to have that happen. The Kirkland is the only one with a production date and a best used by date. I can't find anything on the Napa Valley or the Colavita which is disappointing as I know olive oil is really only good for about a year from when it was made.

I think I will pick up a bottle of Safflower oil for my next cake. I appreciate all the input. Based on all the great replies I looked up this article that may be useful to others like me who don't have any idea in the kitchen.

Open Original Shared Link

Michelle

Google "thyca" for low iodine diet guidelines. They have a cookbook, etc. free and online.

Thanks! That was very helpful. Alot more stuff to avoid though <sigh>. I'm having good luck combating the itching but am not making any headway on the bumps so far.

Michelle

Anything that cuts off air to the rash tends to help, I've found.

If you want to find out if it's DH go on a low iodine diet, in addition to the gluten-free diet. Resolution under those circumstances is a pretty strong indicator.

Thanks again. I did make my husband eat the asparagus in the house, I don't salt anything and we don't eat seafood. Other than that I'm not sure what to eliminate since a general search for iodine lists lots of fruit and veggies that I probably should be eating.

Michelle

I only have olive oil in my pantry and it gives an odd taste to boxed cake mixes. What is a good healthy gluten free alternative that will make great tasting cakes?

Thanks!

Michelle (the non-cook so I apologize if this is a stupid question)

Vanicream during outbreaks, with a layer of Vaseline.

Ugly but effective.

My DH is under my arms, so it's very sensitive skin.

When the sores weep, I pack washcloths and ice packs under my arms to help stop the itching and the gross feeling.

Thanks!

I don't know if I have DH (If I itch even just a little horrible little bumps come out and the itchiness becomes worse) but wondered if anyone who knows they have DH would mind doing an experiment with Vitamin E skin oil (from soybean not wheat). I slather it on very liberally and let it sit without disturbing it for maybe 5 min. Then I notice my itching is decreasing and then gone. I'd be curious if it worked for someone who knows they have DH. Please post your results. Periodically if any itching comes up I reapply the oil and it goes away again.

I'm also taking 400 I.U. Vit. E internally but that doesn't have to be part of the experiment.

I saw my Dr. yesterday. She had never heard of DH before. She suggested Benadryl and sent out an expensive food allergy blood test that isn't covered by insurance. If I can't figure out how to get rid of this on my own then I'll have to pay big $s to go to a holistic Dr.

Thanks!

Michelle

I found it helps to keep rashes moisturized with something heavy-duty. Oil would count as heavy duty.

What have you found that works for you? I tried coconut oil on the advise of my mom but it made it itch worse.

Thanks!

About 3 days ago I started having clear blisters come up through my skin that itch like crazy. I don't yet know if it is DH but if I itch it then it gets worse and more clear blisters come up wherever I've itched the skin. I've tried a number of things I had around the house to get it to stop and am having good luck with Vitamin E skin oil with soybean oil (not derived from wheat). Has anyone found this effective for itch relief on DH? I'm seeing the Dr for something else tomorrow so will see what she thinks it is.

Thanks!

I was in Egypt on a 4 day overland with a private tour operator. I explained gluten free in advance and then to all my travel guides (we switched guides depending on what city we were in). I also had all the meals included so I had a guide at each one or at least at the beginning so that they could explain gluten free. I didn't get sick once and had some wonderful food. It has been a couple of years but I believe roasted meat or fish, veggie and rice dishes were common as well as good Indian food. Breakfast was usually at a hotel buffet and I had sliced meat, cheese, eggs and fruit. We stayed at the Sheraton Luxor Resort and the Mena House Oberoi in Cairo. I told the tour company that we wanted the price to include only eating at the best restaurants and not any buffet meals except the hotel breakfast. I wanted sit down restaurants that would make meals to order as I think buffets are too risky.

I found the Middle East and Mediterranean to be pretty good with gluten free. I think that cultures that make their meals from fresh ingredients rather than prepackaged like you get in the US tend to be pretty easy to work with.

I haven't been to Jordan but I had an easy time with gluten free in both Turkey (yummy vegetable salads in addition to meat kabobs) and Israel.

It is a good idea to bring prepackaged bars just in case. I always take Kind bars as a back-up in case I need to get something to eat and don't have a local gluten free option. If you are with a tour company tell them you must be able to order a meal and cannot have the buffet. Then involve your guide in ordering the meal so everything is conveyed properly.

When traveling I take Gluten Ease and Digest Gold digestive enzymes at the start of each meal. The last thing I want is to get glutened and have diarrhea while on a bus caught in a traffic jam.

I also use and carry probiotics to combat against bad bacteria. The one I used was one of the Pearls by Enzymatic but there are probably many that would do.

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Here is an article on probiotics for travelers diarrhea.

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Have a great trip!

Michelle

I only get it if I'm going to be around an at risk population. I only get the mercury free version. I had a test done that shows I react to Thermisol (a mercury containing preservative in the normal flu shot). I also react to formaldehyde and aluminum so the shots can be very toxic to me. I haven't been tested for it but I know I react poorly to Neomycin used in neosporin (it always irritates my skin and causes a bad rash) and that can also be in the vaccine. For me a flu shot is a toxic cocktail.

I had the Clifford Materials Reactivity Testing which was ordered by my dentist and that is how I found out about my reactivity.

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For me it was very helpful since I didn't know about the Thermisol and whenever my eye Dr. prescribed eye drops my eye got infected and I had no idea why. After the test I knew why. Same thing with flu shots. They always made me sick and after the test I knew that Thermisol, Aluminum, and Formaldehyde were toxic to me along with a wide variety of other metals (some of which are common alloys in Platinum so I now knew why my engagement ring reacted with my skin). I already knew about the Formaldahyde since I react poorly to new furniture that is out-gassing or new carpet that is out-gassing and as I stated above I had known for a long time that Neosporin gave me a rash. I had no idea it could be in a vaccine.

Here is a link to the toxic ingredients that can be in the flu shot.

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I think I found my Thermisol free version last time either at a holistic Dr. or a travel clinic. You can find them but you have to call around.

Michelle

Edit: Forgot to mention that if you think your getting the flu take some Oscillococcinum. You have to take it right at the beginning when you first start feeling poorly but for me it has been wonderful. I've recommended it to people on cruise boards where we all don't want to get sick right before a big trip and they always track me down on the cruise and tell me that it worked wonderful for them or their family. You have to have it on hand as it has to be taken right away.

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For colds I've had great luck with Cold Calm.

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