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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Kefir – suspicious ingredients
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Hi guys, I had a really bad reaction to a certain brand of kefir yesterday. The reaction was neurological and I think it must have been an accidental glutening or an allergic reaction to an additive. The problem is I don’t know which ingredient had caused it. I was wondering if anyone has experienced a negative reaction to any of the following ingredients:   

 

Locust bean gum E410

Apricot puree (further unspecified)

Glucose fructose syrup

Citric acid E330

Sodium citrate E331

Paprika extract E160c

 

I haven't listed the rest of the ingredients because they seem to be ok: e.g. milk, sugar. 

Thanks

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When items have multiple ingredients it can be hard to tell to which we are reacting.  That gluten reactions can be delayed can also make it difficult and at times confusing. I would have random reactions at first and keeping a food and symptom diary helped a great deal. For myself the common item was soy but it took a few weeks to realize that was what was making me ill and I never would have been able to pinpoint it without the diary. I know this wasn't very helpful but I hope you are feeling much better soon.

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3 hours ago, Gluten_free_01 said:

Hi guys, I had a really bad reaction to a certain brand of kefir yesterday. The reaction was neurological and I think it must have been an accidental glutening or an allergic reaction to an additive. The problem is I don’t know which ingredient had caused it. I was wondering if anyone has experienced a negative reaction to any of the following ingredients:   

 

Locust bean gum E410

Apricot puree (further unspecified)

Glucose fructose syrup

Citric acid E330

Sodium citrate E331

Paprika extract E160c

 

I haven't listed the rest of the ingredients because they seem to be ok: e.g. milk, sugar. 

Thanks

My son reacts with neurological symptoms when he comes into contact with gluten. He is NCGS. We are doing Paleo diet right now to include avoiding all dairy and he's doing well. They sell a coconut based kefir at Whole Foods and I don't believe it has a lot of additives like guar gum or locust bean gum. I personally have found, through elimination diet, that I get blisters and joint pain when I eat gluten and anything that contains soy, tamarind, guar gum and locust bean gum (I'm assuming these are all legumes). Dairy causes my skin to be dry and itchy. I've also reduced our sodium intake. I often question whether my son's neuro issues are a result of my not realizing that I was gluten sensitive during pregnancy. I lived in a brain fog and used to get spells of dizziness which I believe was caused by gluten. Anyways, I suggest try eliminating all of those ingredients and then add one back in after a week or two and see what happens. Wishing you relief 

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Do you have an intolerance to corn?  I think that might be the source of the glucose fructose syrup.   

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I've had kefir without problems but it was unflavoured I think.

Although how certain are you that the kefir was to blame? Can you retrace your steps foodwise and see if there's anything else that may be suspect/subject to cross contamination?

3 hours ago, Gluten_free_01 said:

I haven't listed the rest of the ingredients because they seem to be ok: e.g. milk,

Are you ok with dairy? I've found myself if anything more sensitive to it since going gluten-free.

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One of my daughters is milk intolerant. She had a history of mucus and phlegm and I didn't connect it right away. One day while drinking kefir she got a weird sensation in her throat and almost threw up. That happened twice. We cut milk and it has never happened again. The mucus is gone as well as an eye twitch/tick she developed. 

So, it may be the casein in milk. 

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Thank you everyone for your replies.

ravenwoodglass: Your advice was helpful :) I’ll try to avoid items like this which have so many unnecessary and artificial ingredients – they make me feel out of control. A food and symptom diary is a great idea - especially when trying out new brands of foods.

artistsl: Thanks for the tip – I don’t live in the US/UK unfortunately so I won’t be able to purchase this specific brand of kefir. However, I agree that it’s a good idea to try and find another brand which isn’t full of additives. It won’t be a problem.. I’m NCGS as well and I’m very familiar with brain fog and dizziness.. very unpleasant. As for the locust bean gum, I’ll definitely try to avoid it. I don’t think I have an issue with dairy but know that many celiacs/ncgs people do so it’s a good suggestion.

cyclinglady: No, I don’t have an intolerance to corn in general.. but maybe I do have some kind of intolerance to the glucose fructose syrup.. it’s a very artificial and processed ingredient and this is not the first time I’ve found myself reacting in a bad way to an item that includes it.

Jmg: Yes, the unflavoured ones would be safer, I think. I’m almost sure my reaction wasn’t to dairy as such but to one (or more) of the additives. The reason is that I’ve been eating lots of dairy products since I went off gluten and have been ok. The pattern is this (I guess): if it’s a normal dairy product such as a yogurt made of milk/cream + yogurt cultures (+ fruit + sugar), it’s ok. And unflavoured milk and all kinds of ‘real’ cheese are fine, too: mozzarella, cheddar, cottage cheese etc. Once a yogurt/kefir or another milk product includes additives or unnatural ingredients, there seems to be a problem.

You’re right - there are other possible sources of cc.. I try to think about them one by one because it really gets very confusing when there are many possible sources of a glutening/cc.. it’s almost like an investigation. It’s a very good point though, thanks :)   

Feeneyja: Thanks for the suggestion. As I said, for now I’ll probably assume I’m not dairy intolerant but will definitely be wary of it and bear it in mind because many of you guys have pointed it out.  

 

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I currently would react to glucose and citric acid. Jury out on paprika. Since 2016 in addition to gluten which has been a problem longer than diagnosis, I dropped milk and corn. Corn and corn derivatives are high alert immune reactors for me now and damage my gi. I can't have synthetic derivatives of corn flavors/ color or natural distilled derivatives from corn ie vinegar. Only acv for my salad dressing/baking. My immune system now says no corn in all forms. I ate it prior to 2016 weekly.

I wish you luck since the reactive ingredient is not transparent. Keep watch as others suggested to suss out the culprit.

I started home water keifer in the second ferment you can add flavor berries etc. , but ginger is my favorite.

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5 hours ago, Awol cast iron stomach said:

I wish you luck since the reactive ingredient is not transparent. Keep watch as others suggested to suss out the culprit.

Thank you, Awol cast iron stomach. It's really hard to tell which ingredient(s) is the wrong one for me. I think I'll eliminate all additives as much as possible because they are unhealthy anyway and then if that doesn't work I'll eliminate corn and dairy, too.

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