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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.

Different "glutening" Different Symptoms? And How To Deal When Someone You Love Is Trying To Kill You With Gluten?
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12 posts in this topic

So, To make things simple: I have a family member who likes glutening me, and then explaining it away as something else.

Two weeks ago, he added soy sauce to a recipe, without telling me. I just got really bloated and had severe stomach cramps for about 48 hours. I had low energy working out, but that might have been more related to the whole pooping-my-brains-out thing.

four nights ago, he rinced his pasta in a colandar, and then threw my gluten-free pasta in, after using the same wooden spoon to stir both pots. since then, i've been slow, achey, depressed, and I get bloated every time I eat (I do get hungry, though). stomach cramps aren't really happening this time.

The former experience is more typical for me... but I realized that most glutening in my life comes from soy sauce, and this is the first time that the effects have lasted so long and are so mild/un explainable.

Two issues here:

Do other people get different symptoms when glutened in different ways? I know that things in which the gluten source is likely to be at least partially fermented (like soy sauce or beer), I feel somewhat differently than when I get glutened by straight up wheat. That being said, I'm always glutened via sauces or cross-contamination --- I don't eat anything that would likely contain any amount of gluten that could be measured by a kitchen utensil.

Also, this person doesn't believe I have a problem, keeps giving me gluten, and then gets pissed because I get sick, but explains it as something else. I figured he'd eventually figure it out, but he's not, and I feel like poop at least once a week from inadvertant or purposeful glutening. I realized after 3 weeks of going gluten free on my then-doc's suggestion that I felt better than I had in 4 years -- my joint pain and constant athletic injuries were greatly reduced or gone and I had more energy and was more active. I haven't had the blood test / biopsy. Without those tests he won't believe that this is gluten related -- [i started going to yoga after my joints stopped hurting so much, and he thinks yoga stopped all my bodily pains]. How do I convince someone that I actually am sick from being glutened -- by him!! I know eventually, I'll have to get the tests to prove it, but health care is expensive and I'm currently uninsured and live in rural america.... but it seems stupid to get a test that is considerably less reliable than the results of eating gluten-free for over a year, now.

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Depending on how much gluten you get I do think you can have different reactions. If I ate a piece of wheat bread, I would feel horrible immediately. But if I used the same colander to rinse my pasta or got CC'd with a spoon, It would take a little longer. Soy sauce? Instant bathroom run. CC'd gluten-free crackers? Takes me a few days.

I have to say, my husband kept cc'ing me to "test it" when I first got sick. It took about 3 weeks (and MANY angry posts on this board lol) for him to finally "get it". I bought a book for him too. Once he saw how much healthier I was he hopped on board. Now he is INCREDIBLY supportive, and even protective of me when other people ask stupid questions. He just had to have it click. Some people are like that.

I am so sorry you had to deal with this, and I hope it gets better soon. I suggest making your own meals and not letting the food offender near your food.

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I would throw all the gluten containing food away or donate it to someone and then replace with gluten free items.

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Probably you should fix your own food, and refuse to touch ANYTHING prepared by this person. Do you live with him? Your health is non-negotiable - let him know that and calmly take whatever steps are necessary to protect yourself. Tell him you are sorry you cannot trust him to respect your needs but since that is the case, you will not be eating anything he has touched. Please don't let anyone poison you or make you feel guilty for doing what you need to do!

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Sounds like you live with him. Consider not living with him if he cares so little for you that he purposefully is trying to hurt you. If he was hitting you, I hope you wouldn't keep him around. He is poisoning you.

If you think he will come around or is worth keeping for some reason, then I would not let him cook for you. I might even consider locking up your food and pans & colanders, etc.

I would think that fact that the doctor told you to try this diet would be official enough.

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I ended an 8 yr relationship a couple of months ago because he kept cross contaminating me. He believed I couldn't eat it but he just couldn't get the fact that cross contamination was an issue. Also, it woke me up to the fact that he had control issues. I didn't realize or kept myself in denial because of that and I was miserable for a long time.

You constantly being glutened is causing depression as well as other issues. I finally decided my health was more important than keeping him happy. I'll love that man until the day I die but I can't live with him anymore.

All, I can say is try to get some facts for him to read but from I have read here, it's not gonna do any good. He has his thoughts and there's no changing them. Just my opinion mind you.

I hope you start feeling better.

Vicky

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I have had different reactions depending on the amount of gluten. I don't know about the different forms. If it's something that is heavily laced with gluten I will get nauseous and throw up about 30 minutes to an hour after I eat it. If it's just CC, then I don't throw up and my symptoms last for much longer (up to a week).

As far as your family situation, how old are you? Are you still living at home? If this is your brother or dad or someone that you can't just cut out of your life, then you may need to get testing to prove to them that you can't eat gluten. You can be super careful and try to make all your own food, but if this person doesn't believe they may try to sabotage your gluten-free food. If I were in that situation I would try to be careful and save up money for an Enterolab test. There is controversy on this board on whether they are too sensitive of a test, but from what I understand you don't have to be on gluten to get a positive test result. So you can get that and show the results to your skeptical family member if you really need to.

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Yes, glutenings can feel different. I get any random combination of stomach ache, diarrhea, anxiety, fatigue, and canker sores. Roll the dice, pick at least two. :lol:

There is an element of malice in your description which is troublesome. There is a difference between living with someone who just doesn't believe you but humors you (been there, done that) and someone who is actively trying to poison you. You could try giving him articles on all the problems gluten can cause for people. Be sure you include some on the celiac-related intestinal cancers. (The cancers are actually rather rare but the scare factor is useful.)

Moving out so you can have a completely gluten-free kitchen would be the best solution. If you are in circumstances where you can't get away, you need to put your foot down and stop eating anything he cooks. If someone had put rat poison in food, you wouldn't ever trust their food again. This is essentially the same thing.

Also, as far as diagnosis if you don't need one for yourself, I wouldn't recommend the gluten challenge. As you say, it's stupid to get a test that is less reliable than the diet. I totally agree and was never tested myself. My current doctor agrees as well. He says he wishes more people would just try the diet instead of wanting unreliable tests. Besides, you have to eat four slices of bread worth of gluten for 4-6 weeks to have a shot at a positive result. If you go on gluten for a month it sounds like you risk athletic injuries. Torn ligaments can give you a lifetime of trouble.

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I am going to agree with everyone who said to make your own food. Only eat what you make yourself. Why trust someone who doesn't get it?

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The fact is......you feel better when you don't eat these things. That is all that should manner. You don't/should not have to prove your diagnosis! My husband is a bit the same....I have psoriatic arthritis and take injections twice a week....he seems to think that good old exercise and a few of his twigs and berry pills will fix it. What I keep telling him...is that the medication STOPS the progression of the disease. He has finally shut up about it. I've got news for him...I am waiting for my biopsy results from my endoscopy I had on Friday. If it shows Celiac...he will be gluten free also. I never have to worry about him poisening me because he NEVER cooks. Luckily he understands food issues...as our child is allergic to soy, wheat, oats, corn, dairy, eggs and peanuts. It can be very severe and cause death. Now I know that allergies and Celiac are different...but regardless...it still makes you sick. Ask him/her....wouldn't you rather have me feeling good and being happy? Who does the grocery shopping? In our house it's me...and I do all the cooking too. Definately cook your own food and consider getting rid of all products that contain gluten.

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I had one more thought. What is it with people? Do they seriously think that Celiac is a disease you WANT to have? It would be easier if they had a pill you could take to counteract the gluten...it's much harder to go gluten-free. And I can't think of anyone that WANTS to have this diagnosis. But...it is what it is....if you get sick eating the stuff...you have to stop.

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So sad to hear that people just don't understand. My daughter is allergic to gluten and my mother in law insists I have her on a fad diet.

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    • 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.  
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      I have not. I'll talk to my doctor about it
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