DinaB

Same here. I have used many brands with no problems.

Although I cannot tolerate fruit anymore, I used this on strawberries, peaches, etc. It brings out the sweetness of the fruit. It's also great in teas and drinks, as it dissolves in cold as well as hot, and it's low on the Glycemic index.

Thanks everyone for posting and the ideas. I guess I've been in total denial about being "super sensitive" as it's another label I didn't want to give myself.

Something to make you laugh...I've been home from the hospital since last Thursday. I have to say the first days being home and not being on pain meds were the worst. However, feeling better and able to bend (stitches across abdomen) I decided to shave. Well, the maker of the razors decided to change it's "moisture strip" and add a vitamin oil to it. We order these razors in bulk as my husband shaves his head, and the cost is much cheaper to us. We never noticed the new packaging. Two days ago I developed a rash under my arms and down my legs. Going out of my mind. I realized yesterday when I went to open the new razors and they were marked "new" all over the place. Once I showered and reshaved I was fine.

The point is I know that companies are able to change their packaging at any time, BUT, if I didn't find out here on this site that Vitamin E is derived from wheat, I'd be beating my head against a wall still trying to figure out what is causing my symptoms.

All I am asking for is clear labeling. Is something is derived from wheat, then just say it!

Hello all,

I don't post here often, but I am here regularly as I think most of you know more than some doctors. I believe in what I read here and take this site very seriously.

My one major complaint is that since I started having allergies and symptoms to allergies, I've done so much research I feel like I can be a chemist, or a nutritional expert of some kind. The most frustrating part is that once I feel I have it all worked out and KNOW what I can and cannot have, some little thing will creep into my world and cause all sorts of reactions - - leading me to become a detective again.

The FDA doesn't make it any easier either. If everything could just be labeled simply, we would not have to spend numerous hours researching and contacting manufacturers to dissect every ingredient where it originates from.

I was operated on last Tuesday. I spent two miserable days in the hospital itching, rashes and completely out of my mind. Turns out I was having a reaction to the anitbiotics as well as the pain killers. Every time I had to try a new pain killer, there was me or my husband looking it up online to make sure it was gluten/lactose/soy/egg free. I couldn't even have regular anesthesia because it contains egg and soy. I had to use an older anesthesia which takes a longer time to get out of your system and has lots of unpleasant side effects.

My husband had to bring a cooler of food as well as sheets and blankets for the hospital bed, as I also have a horrible fragrance allergy. Every time someone came in my room to take vitals they were swimming in perfume. Finally a note was posted on my door and the only people allowed in were my husband, doctor, and nurse -- all had to be perfume/cologne free.

Sorry for ranting and raving, but I am finding it thoroughly exhausting trying to keep my environment "free" of irritants. Every I turn around I find more and more things that cause a reaction to me. Do any of you find that the more you food and items you eliminate the more you become overly sensitive to things or is it just me?

What also worries me, as well as my family is what happens if I ever need to be hospitalized and NEED pain killers. I went through three and my doc gave up. I was in severe pain for three-four days cold turkey after major surgery...is this normal?

Truly frustrated and tired of playing a detective.

I was accidentally glutened yesterday afternoon. I knew it right away because I get a sinus/migraine headache that will sometimes last for days (depending on how much is digested). About 1 hour later severe D, followed by hives/rash, nausea, mouth sores and then the next morning I get eczema all over my scalp and face. Fun stuff...

I have realized lately, that depending on what I consume, my symptoms will begin just not in the same order. It is all very strange.

I've become really paranoid about what I eat Today around 4:00 I had a meeting at a coffee shop, so I ordered hot tea... Republic of Tea, only three ingredients: black tea, natural blueberry flavor, and blueberries. It seemed like a reasonable risk.

While I was drinking the tea I started to have a strange feeling. I was lightheaded, my eye started twitching, and the muscles around my mouth felt tired (like when you're in a wedding and you have to keep smiling for a couple of hours while they take photographs). By the time I left I was feeling OK again. I picked up my daughter from preschool and everything seemed fine.

Around 6:00 I had some vegetable soup (make from scratch... plus I had been eating it the previous two days with no problems). About 20 minutes later, I suddenly noticed that my hands were ITCHY and red. I looked in the mirror and my face was bright red! My heart was beating hard and fast. I had some diarrhea and then I started getting nauseated... I felt like I was going to pass out... so I called 911. I called my husband on his cell phone, but there was no answer. I threw up a LOT and they hauled me off to the hospital. Some high-strength Benadryl did wonders.

Hives, severe flushing, nausea, diarrhea, feeling lightheaded... I've NEVER had a reaction like this It freaked me out. And the worst thing is... I don't even know for sure what I'm allergic to. The tea was the only new thing I had today. Natural blueberry flavoring??

The crazy thing is that I had some allergy testing (skin test) back in August, but nothing turned up. Maybe I need more testing... or the reaction just doesn't happen quickly enough. Has anyone had this kind of acute allergic reaction pop up as an adult? Maybe my immune system is hyper-sensitive now that it's not being bombarded with gluten and corn every day.

The weird thing about food allergies is that usually foods won't show up if you are "skin tested." I was tested numerous times, as was my daughter and nothing ever shows up. The most accurate tests are when you are tested through the blood. Either way, don't leave home without benedryl.

Hi DinaB:

There has recently been a thread running here on the difference between gluten intolerance and celiac which you may well find interesting. A quick google should bring it up.

From what I have read here, if you do ln fact have DH then you have a positive celiac diagnosis. It is quite possible that your original testing, whether blood or biopsy, or both, was a false negative; many are. If it is really important to you I would suggest retesting. Also, if you have a biopsy taken immediately adjacent to the itchy lesion, DH can be diagnosed and therefore celiac. However, the biopsy must be taken while the lesion is active and so often it is hard to get an immediate appointment. A lot of doctors don't understand this.

Good luck with whatever you decide to do. While your itching sounds like DH it could also be eczema but this could also follow from a celiac diagnosis.

Thank you so much for your quick response. I've had to blood tests, two endoscopies, and a gene test. The gene test was taken at a celiac center in NJ and was told that if that came back negative I would NEVER have Celiacs. I read so much conflicting information, though. I don't understand if I something that contains Wheat/Gluten I get blisters above my top lip, itchy on inside of thighs, arms and now new rash/blisters on elbows. I even had to change all of my lipsticks. This just doesn't make sense.

Even the Gluten-free makeup products advertised right here on this website have the classic "cross-contamination may be present" warning. Is there an eyeliner or any other type of makeup that is genuinely safe for the most sensitive celiacs?

I am not Celiac, but Clinique's eyeliner. It is also fragrance free, but you must check certain brands.

So, I haven't posted here in a while because I've been trying to get my life back on track battling so many food allergies and intolerances. However, I do have a question and I am very confused. Most recently on a business trip I was glutened. I knew it instantly. Although I didn't get the gastro symptoms that I normally would get, I got a few new ones...blisters around my lips and a horrible itchy rash on my elbows that lasted for a week. The itching was so bad I didn't know what to do. While I am only gluten intolerant, is it possible to get DH without being Celiac?

Very confused.

Happy Reading!Open Original Shared Link

Also, what does the "18" mean in the results? Is that high?

Does she have symptoms?

I would also wait for the genetic tests to come back.

Yes. As so as I digest Gluten I get immediate horrible smelling gas, bloating, pain in abdomen and severe itching to the point I have to take an Allegra AND and Benedryl. Also for days following I can't really thing stratight and have horrible brain fog. Tummy problems last for days afterward, sometimes up to a week. I don't believe I have Celiac Disease, however, the reason I tested was to see if I have the gene. My daughter will sometimes get D for no reason and tons of mouth sores and itching as well. Most of my food allergies result in massive itching and stomach problems, but I also have gastritis, IBS AND erosive esophagatis. I was gene tested at the Kogan Celiac Center in NJ. They called last night and said that the Celiac Antibody was negative, but that the gene test will take another 7-10 days. So I wait...

It means you have a large number of antibodies to "Gliadin" in your stool.

Gliadin is a glycoprotein present in wheat and several other cereals within the grass genus Triticum. Gliadins are known for their role, along with glutenin, in the formation of gluten.

Hi, thanks for your response . So I'm confused by the "follow a strict and permanent gluten free diet." Does this mean I need to have my daughter checked as well?

So I just received my results from Enterolab and of course they are positive. I am still waiting for the results of my Celiac Gene test and should have those by Friday. Can someone help me figure out what this means...

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 18 (Normal Range <10 Units)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

WHAT DOES ELEVATED MEAN and what does Fecal Antigliadin IgA 18 mean?

Thank you to anyone who can help here.

Why do you remove the beans? Is it a personal preference or is there a problem with them?

I remove the beans due to allergy and IBS issues.

I did the the stool test with Enterolab last week (Monday) and was just curious as to how long it took before the results came back.

Hi

Wendy's has been a life-saver for me! Diagnosed in February, I've had trouble with veggies and dairy as well as staying gluten-free. A Wendy's plain baked-potato with chili (taking out the beans) has been the perfect fast-food meal when my husband and I have been on trips or just don't want to cook. I can manage salad again now, so we've had fewer meals at Wendy's in the last month or so. Also -- my follow-up TTG test was normal, so I feel confident that I haven't gotten CC at the Wendy's in my area.

That is exactly what I ate yesterday. I took out the beans and poured on the chili...it was my best lunch ever!!!

I can finally come on here and say my stomach/gut is doing really well! My stomach was sick for so long that I thought I'd never feel well again. I had to do a strict elimination diet to find out what my other food triggers were. I discovered that I can't tolerate soy, dairy, and nuts in addition to the gluten. Once I eliminated those foods in addition to the gluten I started to see improvement. It still took a year, though, before I could see real progress!

Hi Emily,

It's crazy how a lot of us have egg/nut/soy among other things. I really think if we experiement enough and really keep track of what we are putting in our bodies, we can overcome the intolerances....I HOPE

Personally, I don't ever rely on a list. I call the manufacturer and check each time I'm prescribed a medication. There are 2 that I take on a continuing basis, and I call them every few months to make sure they're still gluten-free.

Thanks. I guess I will have to do the same.

Does anyone have an accurate source for locating Gluten Free Medications. I thought the glutenfreemedicines.com was accurate until someone posted that some of Pfizer's drugs are not safe. When I do get sick I take Zithromax, which according to glutenfreemedicines.com is listed as gluten free. Pfizer's website reports that it HAS gluten.

Who can we trust here?

So this is getting very interesting...

I've been on here complaining about my stomach problems and kept asking myself why I haven't gotten any better (gastritis). So, after reading many posts I've decided to remove all grains from my diet and see what happens. Since last Thursday I have not had to take my Bella Donna (anti-spasmodic) at all. I was taking up to three, sometimes four a day. I felt like a zombie by the end of the day and the pain and bloating was still overwhelming. I keep telling myself one day at a time, right?

When you remove all grains from your diet you're always hungry. So I've been snacking on fruits and veggies almost every two hours. Because I have an almond allergy I've stayed away from all nuts for almost one year. All of my delayed allergy symptoms were pretty much the same...severe itching and hives/rash. Now, I have a new symptom which is Eczema. I only get it on my scalp and hairline. Within 24 hrs of me digesting anything related to wheat, eggs, casein, or soy I get eczema. It lasts for 2-3 days and then completely clears up. This is a true tell-tale sign if I've been glutened. Because I'm changing my diet again, I decided to add back in nuts. I started with Cashews and Macadamia nuts. I've always been able to eat them. Well now I can't. I don't understand? I am confused by this whole thing??? I never had a Soy allergy/intolerance, now all of a sudden I can't have soy or any nut for that matter. Is it safe to just live on Meats/Veggies/fruits? I feel like I am getting more intolerances instead of less. I do feel really good giving up the grains, though. I feel like the fog has been lifted and the pain and bloating in my stomach is gone. Is anytone else on the Specific Carbohydrate Diet? I haven't gotten the book yet and don't know how long is safe to be on it. I do feel as though I may have a carb intolerance. Last week I thought it was fruit. After removing the grains and adding back in the fruits I can honestly say it's the grains, of which I was only eating rice and potatoes. Sorry to ramble here, but this gets so frustrating. Getting another allergy test on Thursday...Celiac Gene test on 10/21.

Trying to figure this all out.

Pepcid, Zantac and Zyrtec are all Gluten Free. There are many differnt kinds of Claritin, so it depends which one. Check with www.glutenfreedrugs.com

Thank you all for the information!

You bring up a very good point. Yes, my Allegra, Belladonna and Zantac are all gluten free. If I were using shampoo/conditioner that had wheat in it I would know it because I would itch like crazy. However, I didn't realize that cutting boards, lipsticks, scratched pots and pans could get me sick. Is there anything I should be looking for?