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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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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.

What Could It Be?
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63 posts in this topic

I had a wonderful day yesterday and the meal was perfect.

Stuffing made with Glutino Genius bread.

I went to bed at midnight and wok at 4:15 having an allergic reaction. Took a pill and after an hour felt better, went back to bed and woke an hour later and the reaction was worse.

Itchy lips and mouth and that awful sinus pain. I took another pill and it has eased but it is still there. I have no idea what it could be from. Maybe a reaction to the bread in the stuffing? I did eat a lot of it and also had some later.

I ate Butterball turkey, stuffing, sweet potato yukon gold potato (very little) homemade cranberry sauce, roasted carrot,turnip and beets with sunflower oil and Tbsp balsamic, frozen peas, gluten-free gravy made with rice flour and homemade pumpkin pie, crust less with gluten-free chex topping and Breyers all natural vanilla ice cream.

Any ideas anyone?

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Do you eat Chex and Breyers often without any reactions? They might have gluten cross contamination issues.

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Dont they inject the Butterball turkeys with some kind of oil to make them juicy? Maybe whatever is in the oil mixture got you.

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What are you allergic to? Was anything new to your diet?

I am allergic to wheat and the Breyers was the only thing new.

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Do you eat Chex and Breyers often without any reactions? They might have gluten cross contamination issues.

The Chex (same box) has been fine but the breyers is new.

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Dont they inject the Butterball turkeys with some kind of oil to make them juicy? Maybe whatever is in the oil mixture got you.

I am so new to all this I could be reacting to something other than wheat.

I have had constant symptoms since.

Yesterday I ate turkey, cranberry sauce, gravy, chex with milk, the oven risotto with turkey in it and broccoli and pie with the ice cream.

I got up an hour ago and was ok but now am in pain and the itchy face, mouth etc. The only thing I have had is one cup of coffee with Coffeemate and a spoon of honey.

Maybe it is environmental? Could it be candles? I burned some on Christmas but not since but they are still sitting on the table.

I will stick to a very basic diet today, things I know are safe and get rid of the candles just in case.

Thanks for your thoughts.

Charlotte

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The Breyers all natural vanilla is on their gluten free list. http://www.penny.ca/Breyers.htm

Has anyone checked to see if they use a dedicated facility to produce their gluten free foods? Do they use dedicated lines? Are those issues that you normally have problems with?

Since that was the only new thing, that is what I would suspect the most, but it could be other things too as you know.

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I do not know what is in Coffee mate---is this something new for you---is it something in there maybe?

Did you make the gravy yourself?

Just trying to help figure it out.

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Coffeemate is gluten-free, but contains casein (dairy).

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I thought the Breyers and the coffeemate were safe. I have had coffeemate without problems before but this is a new container. I did have a second coffee but used milk just in case. Dairy has never been a problem.

I made the gravy with gluten-free br. rice flour that I have used a lot.

This is so new to me I guess I may need to do the elimination diet. :(

I suspect it may be something other than wheat. But it is a histamine reaction.

I'll be cautious for the next few days.

Thanks again, Charlotte

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I don't believe Breyers uses dedicated lines for gluten free items.

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Suspect the dairy. Even though it hasn't been a problem for you in the past. It happened to me too. Ugh.

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Suspect the dairy. Even though it hasn't been a problem for you in the past. It happened to me too. Ugh.

I am suspecting dairy.

I have had a migraine for 3 days. (had them my entire life) I have been having this productive cough since October when I first got ill. Sometimes it gets worse, sometimes bad wheezing. I have noticed a connection with being cc'd with wheat. Now dairy.

I ate grilled cheese last night and when I went to bed I could not sleep with the migraine pain and wheezing and coughing, it was all suddenly worse.

I know nothing about Casein except that it is in milk.

If someone could point me in the right direction, web sites, , personal experience I can get busy trying to figure this out.

Thank you, Charlotte

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Forgot to add that I have been having some reflux. Never had it before that I can remember.

Charlotte

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I just had a decaf. coffee with coconut milk. Within 15 minutes I am having a histamine reaction. The coconut milk, canned, has x-gum, E466 (thickener) and sulfites. Are histamine reactions usual for x-gum or sulfites?

Charlotte

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Sulfites are a common allergen. In Canada, they make the top-ten list which must be disclosed.

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I have to agree--the Sulfites may just be it. They can cause this histamine response, yes.

I have a friend who cannot drink wine because of sulfites. Closes her nose and swells her sinuses and closes her throat right up. She gets red-faced.

Are there sulfites in any of the things you listed earlier in the thread that caused this reaction?

You may be onto finding your culprit!

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I just checked everything except the turkey (packaging is gone) and there are sulfite's in the balsamic vinegar I used on the roasted veggies. I ate some Christmas day and then had some again last night for dinner.

Just looked up the turkey, no sulfite's.

Maybe we found it!

I started another food diary. Maybe that will help.

Is there anything that naturally contains sulfites and so might not be on the label? Like fresh cranberries?

Charlotte

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Maybe you can google and find a list. Just be careful..... Find a reputable site. I was looking for foods not to eat for an ulcer & half the people that have ever had an ulcer seem to have a website with " advice" and " cures". :blink:

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I agree about the sulfites possibly being a culprit if you haven't had extensive allergy testing to rule them out. With the kind of reactions you are having it really sounds like you need to find a good medical care provider to help you sort more things out, if possible.

On a side note, I've always reacted to breyers ice cream. Never really got into the why because I stopped trying to eat it many years ago before any of my allergy testing, etc. OMG the chocolate covered whatever they were called that they had were good though, but after reacting every time I gave up. I don't react to other carefully chosen ice creams or dairy.

Hope you feel better soon and figure out the culprits.

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I had a bad night. Waking up over and over and a nightmare. A very detailed nightmare, end of the world, how are we going to survive. Very telling I think. :)

I will make an appointment with the doc and the dietitian today and I am booked with an allergist but not until June. :(

I am going to basics today, rice, plain meat etc. Keeping my food diary.

I just want my head to stop hurting and the brain fog to clear so I can concentrate.

Thank you everyone for your help.

Charlotte

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I hope you feel better soon.

I was in the same boat, pre-DX and for several months Post-Dx too. I was in a constant histamine response. Red-faced, with a raised red rash on my face (was it lupus? tested. nope) red chest, burning skin, stuffy nose, sinus pain, burning lips, mouth, throat, difficult breathing, migraines, trouble swallowing (everything felt like barbed wire or razor blades going down), food tasted spoiled & metallic , my tongue was coated white (but it was not a yeast issue. Tested for that as well.) I was clearing my throat constantly, like I had a bone or a lump in there, swollen lymph nodes, swollen glands, swollen puffy, dry & itchy eyelids (tested--was it Sjrogen's? no--blepharitis) and on and on and on... I was in misery. :(

EXTENSIVE and expensive allergy testing and food intolerance testing and 9 months on an elimination/rotation diet (keeping a detailed journal--as I had since my nightmarish illness began 3 years prior)---

and it revealed.....

absolutely nothing. :(

The allergist looked at me perplexed saying there was nothing wrong, yet there I was with a constantly drippy nose and dry, red eyes and my mouth and lips beet red and peeling and my scalp peeling, hair falling out and my scalp and face covered in red blistery sores. WTH??? :blink:

It seemed like EVERYTHING was causing reactions, no matter what I took out or added back in. So frustrating! fruits, veggies, even water, for pete's sake--anything could spark a response.

It took almost 9 months for that heightened histamine response to slowly die down. But I ALSO eliminated DAIRY and SOY during that time.

The ONLY time it returns is if I accidentally get gluten CCed.

For me, it was all about the celiac/gluten.

I would hate to see you worrying yourself sick, testing every darn food and spending all the money--as I did--only to find it was inflammation from celiac and gluten.

I have "gluten nightmares"--as do many on here. I am wondering if --with the brain fog and headache you are know experiencing---that you may have been just gluten CCed somehow???

Just suggesting this to you.

I really hope you find answers, as I truly understand how maddening it is.

Best wishes.

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I hope you feel better soon.

I was in the same boat, pre-DX and for several months Post-Dx too. I was in a constant histamine response. Red-faced, with a raised red rash on my face (was it lupus? tested. nope) red chest, burning skin, stuffy nose, sinus pain, burning lips, mouth, throat, difficult breathing, migraines, trouble swallowing (everything felt like barbed wire or razor blades going down), food tasted spoiled & metallic , my tongue was coated white (but it was not a yeast issue. Tested for that as well.) I was clearing my throat constantly, like I had a bone or a lump in there, swollen lymph nodes, swollen glands, swollen puffy, dry & itchy eyelids (tested--was it Sjrogen's? no--blepharitis) and on and on and on... I was in misery. :(

EXTENSIVE and expensive allergy testing and food intolerance testing and 9 months on an elimination/rotation diet (keeping a detailed journal--as I had since my nightmarish illness began 3 years prior)---

and it revealed.....

absolutely nothing. :(

The allergist looked at me perplexed saying there was nothing wrong, yet there I was with a constantly drippy nose and dry, red eyes and my mouth and lips beet red and peeling and my scalp peeling, hair falling out and my scalp and face covered in red blistery sores. WTH??? :blink:

It seemed like EVERYTHING was causing reactions, no matter what I took out or added back in. So frustrating! fruits, veggies, even water, for pete's sake--anything could spark a response.

It took almost 9 months for that heightened histamine response to slowly die down. But I ALSO eliminated DAIRY and SOY during that time.

The ONLY time it returns is if I accidentally get gluten CCed.

For me, it was all about the celiac/gluten.

I would hate to see you worrying yourself sick, testing every darn food and spending all the money--as I did--only to find it was inflammation from celiac and gluten.

I have "gluten nightmares"--as do many on here. I am wondering if --with the brain fog and headache you are know experiencing---that you may have been just gluten CCed somehow???

Just suggesting this to you.

I really hope you find answers, as I truly understand how maddening it is.

Best wishes.

I am sorry you had to go through all that. Bless you for being on here to help the rest of us.

I did actually have the thought this morning that it might be Gluten Cc. My son lives here and he is not totally gluten free and is off work for the holidays and has been eating a lot of junk food. Maybe I am just getting over exposed.

I will scrub down the kitchen today and talk to him about it.

I hope it's gluten, that is enough to deal with right now. :)

I also have the metallic mouth and the swallowing thing. My head itches like crazy but the migraine seems to be easing, yay.

Charlotte

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I am sorry you had to go through all that. Bless you for being on here to help the rest of us.

I did actually have the thought this morning that it might be Gluten Cc. My son lives here and he is not totally gluten free and is off work for the holidays and has been eating a lot of junk food. Maybe I am just getting over exposed.

I will scrub down the kitchen today and talk to him about it.

I hope it's gluten, that is enough to deal with right now. :)

I also have the metallic mouth and the swallowing thing. My head itches like crazy but the migraine seems to be easing, yay.

Charlotte

Aha! WEs also live in the house!! ....(wheat eaters) :)

Charlotte, it could just be the gluten CC!!

You're going to have to be extra-vigilant, hon.

Hubs went gluten-free with me about a month after my DX (of his own accord, I did not ask) because he was fearful of CC--and the juggling of the separate butter, PB, jelly, mayo, etc--and the separate toaster, colander, pastas, etc... was crazy. It's just the 2 of us. He even makes our bread.(I know, he's a sweetie :) )

However, MANY celiacs co-exist perfectly well with WEs in the house and NEVER have a problem. I applaud them!!! :)

Let us know how you feel in a day or so!!!

Those migraines are a bugger. :angry: and yup, my head itched, too...my whole body itched like mad and my skin was dry and peely. Not anymore!! yaay!

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