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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.

Im Sick
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8 posts in this topic

I had 4 days feelling great.. im still healing as its only been 10 MONTHS since i found out i have Gluten problems...anyways it very hard to figure out what i ate because it could be the day before... But im thinking it was this gluten free blue cheese salad dressing at an all you can eat salad bar...... cross contamation? i dont know.. anyways, my intestines hurt and back hurts and i feel like crap...takes about 2 days to go away also..

anyways with the same thing?

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I had 4 days feelling great.. im still healing as its only been 10 MONTHS since i found out i have Gluten problems...anyways it very hard to figure out what i ate because it could be the day before... But im thinking it was this gluten free blue cheese salad dressing at an all you can eat salad bar...... cross contamation? i dont know.. anyways, my intestines hurt and back hurts and i feel like crap...takes about 2 days to go away also..

anyways with the same thing?

Salad bars are not very safe places for us. People drop croutons in the dressings or the other containers that should otherwise be gluten-free. Sorry your having a rough time!

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I had 4 days feelling great.. im still healing as its only been 10 MONTHS since i found out i have Gluten problems...anyways it very hard to figure out what i ate because it could be the day before... But im thinking it was this gluten free blue cheese salad dressing at an all you can eat salad bar...... cross contamation? i dont know.. anyways, my intestines hurt and back hurts and i feel like crap...takes about 2 days to go away also..

anyways with the same thing?

Do you have problems with dairy? That is the first thought that comes to my mind at a salad bar besides possible cross contamination. What kind of dressing did you use? Is it possible you have problems with soy (in mayo) or high fructose (in ketchup, BBQ sauce, fruit drinks). Sometimes dressings can have these in them.

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Do you have problems with dairy? That is the first thought that comes to my mind at a salad bar besides possible cross contamination. What kind of dressing did you use? Is it possible you have problems with soy (in mayo) or high fructose (in ketchup, BBQ sauce, fruit drinks). Sometimes dressings can have these in them.

hi and thank you for writing back...im not sure if i have a problem with dairy...i have stopped eating it after a nutritionist told me, she cuts all dairy and nuts out first... The dressing i was eating was Gluten free blue cheese...and just salad...the next day i was in pain for 2 days..didnt want to do anything but sit and be sad..

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Do you have problems with dairy? That is the first thought that comes to my mind at a salad bar besides possible cross contamination. What kind of dressing did you use? Is it possible you have problems with soy (in mayo) or high fructose (in ketchup, BBQ sauce, fruit drinks). Sometimes dressings can have these in them.

[/quot

hi and thank you for writing back...im not sure if i have a problem with dairy...i have stopped eating it after a nutritionist told me, she cuts all dairy and nuts out first... The dressing i was eating was Gluten free blue cheese...and just salad...the next day i was in pain for 2 days..didnt want to do anything but sit and be sad..

I rarely will eat any salad dressing at a restaurant. If you look at the labels of most salad dressings you will see soy sauce, maltodextrin, MSG, soy protein... all can have gluten. And, of course, the cross contamination is a big problem.

If a restaurant tosses their salad in a bowl, that bowl is usually used for salad with croutons. I have had waiters go back to the salad area and pick out the croutons! They can also use the same tossing utensils on croutoned salad. Not very safe.

I often ask for the vinegar and oil if it is balsamic and the oil is olive. Otherwise I just put lemon on it. I can't eat dairy either, so that is something to test out. I ate a little dairy (the eggs were cooked in butter and I patted it off before I ate it) 5 days ago and had D for 3 days. Not fun.

Sorry you got so ill. It gets so old to keep running into gluten when you think you are doing so well. I have a "zero-tolerance" policy for myself... if I think it might have gluten, I don't eat it, even if I am starving. I have had to go to the hospital before when I was in so much pain, so don't want to do that again. Nothing tastes as good as Gluten Free feels! Hope that made you smile.

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hi yes you made me smile thanks...

I do have another question... How do you put weight on? i lost weight when i had this problem and i have put back a certain amount but thats it....seems to stay about the same...I would like to add alittle bit more....

Do you know what i could eat to add more pounds?

thanks so much

smile.

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If you look at the labels of most salad dressings you will see soy sauce, maltodextrin, MSG, soy protein... all can have gluten.

Maltodextrin, MSG and soy protein are all gluten-free. I have not seen a dressing that contains soy sauce, but yes, soy sauce usually contains wheat.

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I have not seen a dressing that contains soy sauce, but yes, soy sauce usually contains wheat.

Usually, it's in asian salad dressings, like sesame ginger dressing. They're rather popular on the west coast, but I don't know how common they are back east.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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