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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.

Getting Others To Understand Celiac
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23 posts in this topic

Last night I made one of my very first gluten-free meals, after it was all said and done I found out that sour cream has Gluten (i would have never guessed) I told my husband, I was so sad, all that hard work to make sure it was gluten-free, and then it all got screwed up.

My husband said, he thinks I only need to limit gluten, and that will make things better, when I told him thats not the case, that once you go gluten-free, you should stay gluten-free, he says " I dont Buy That" how can I explain to him why it is so important to stay gluten-free, he just doesnt understand why it is such a big deal. I even tried to use a peanut allergy as an example, that didnt work either :( . Please someone help me!! Thank you so much!! :D

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I hope that eventually your husband will understand. I usually explain it to be more like Diabetes. You need to make sure that you stick to the diet closely, I have noticed that if sometimes someone sees a diabetic eating sugar and has a fit. This might help.

Another thing to remember is not to be too hard on yourself at first. As you get used to it, it will be easier to avoid gluten. I remember after I had been gluten-free for about a month, I was at the store and they had free samples of Uncle Ben's Microwavable rice, being male I can not refuse the free samples and I thought, it's only rice...after eating it, we thought about bying some (I know microwavable rice, how lazy can you get) so my wife (who is a wonderful support) read the ingredients...oops wheat flour. In RICE!!!! Who knew? I just learned to be more careful, and realize that there will be mistakes.

Take care.

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:) Hi, I hope this helps you. This is what I got from Daisy Brand Sour Cream:

Is Daisy Sour Cream gluten free?

Yes, Daisy Sour Cream is gluten free. Our Daisy Regular and Daisy Light Sour Cream products contain no starch. We use cornstarch, not a wheat starch in our Daisy No Fat Sour Cream.

My husband used to say the say thing to me. "You never used to have this problem" or "Why all of a sudden?" So I had my GI doctor talk to him. He told him that celiac disease can "rear it's ugly head" at any time. And absolutely NOT can I have anything that had gluten it in. Stay strong and stay gluten free.

If you ever need any advise, this is the place to come. Everyone speaks very candidly here. And the combined knowledge is wonderful.

Good Luck!!! :rolleyes:

Linda

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When I explain celiac disease to people they almost always understand (or at least they pretend to understand). :)

I usually say something like;

When I eat wheat, rye, barley, and oats it damages my intestines and makes me really sick.

That usually gets the point across about how the severe the problem is and that it is not just an allergy and will "go away".

Good luck!

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That usually gets the point across about how the severe the problem is and that it is not just an allergy and will "go away".

OOPS! :blink:

I meant that is it not just an allergy that will NOT just "go away"

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I'm sorry your husband isn't more supportive. You could have him post here, read some research on the internet, or meet with your doctor, but at the end of the day, he really just needs to respect your choice. Try being patient with him, it's a big change for him too, but whether he believes or not, slipping you gluten would be cruel! (I"m not saying you said he did... just rambling. :-) )

(Depending on his background, you might appeal to him logically. The basis of our problems with gluten is chemical. We've got a type of molecule floating around in our body, designed to meet up with food we eat, that triggers our immune response. The whole point of our digestive system is to NOT miss any thing going through the digestive tract, so it will get noticed.)

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My husband has been very supportive for the most part, he even decided he would try the gluten free diet with me, he just doesnt understand how slipping occasionally would hurt things. I just found out we have a seminar coming on October 1 & 2 I am going to try and comvince my husband to go with me so he can learn more about the condition. Thank you for all the help, if anyone else has any advise please let me know. Thank you, you have all helped me very much, i am so glad there is a place to go when you just dont know what else to do.

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Sounds like a good idea taking your hubby to the seminar.I have had this for a few years and find it hard also to convince people that it really is important that I NOT eat stuff with gluten in it.Usually if I tell them about the villi in the stomach and how it attacks it they start to get it and understand the consequences I can face with lack of vitamin absorbtion and the pain and ect. etc.....

My family has just come to accept it and understand that it really is up to "me" to take care of my health and do whatever they can to support me in that goal.It seems after a while it just becomes a lifestyle and less of an issue in our day to day.Beer was definately a problem though :D

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Newbie,

I know exactly how you feel. My husband is very wishy/washy about me being gluten-free. In Feb 04 I was told by my GI doctor that I would not be around in 3 yrs if I did not go on a strick gluten-free diet. I decided to join this forum for support because I was half way being gluten-free. Once I started passing out at work (I am in the medical field) at home etc., I know there is some truth to it. I've been very strict about it for a few months now. When I slip and eat a brownie or cookie that I make for the rest of the family; I have to go to bed because I literally get so light headed I can't stand.

I have know for almost 10 yrs ago I was told that I had "non tropical spru" that was it. Then 7 yrs ago I was told to avoid wheat, that was it. The last 3 yrs I've been told a little more. Every year my biopsy comes back worse. The GI doctors tell me every time I have a scope done, be prepared for us to come back and tell you that there is cancer. :o

My husband makes comments to me, "why make us suffer just because you have to" "it's not our fault, we don't have to eat like that" "you do what you want, it's your life" "if this is a gluten-free meal, I'll take the kids and we will go out to eat" etc....

It's hard, depressing!!! If he drinks beer, I know tell him he can not kiss me. Maybe that will get it through his head. I've increased my life insurance policy thinking that will make him wake up.

Advice from other in this forum, get a cook book. It has made a big difference for me. These people here really do know what they are talking about.

Charlotte

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That is really to bad that your family isnt more understanding, especially knowing the severeity of your condition. I hope that he will soon understand that your health, and your life depends on you obiding to the gluten-free diet. I think it will just take more research on celiac to convince my husband that I need to stay gluten-free, although I have been trying to go gluten-free, but I always find out after the fact that something had gluten in it, this is a very hard diet, and it is even harder to know what you can and cant have. For all of you who have been gluten-free for longer than 1 day, You are my hero's I am trying and I hope to say very soon that I am officially gluten-free!! Thanks for all your help!

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I'm in the same boat... both my kids diagnosed this week by Enterolab and my extended family just doesn't believe they have any problem with it. I explain it but I think they all think I am just crazy....

I noticed memoryofaspyn that you mentioned you are going to a conference on Oct 1 and 2. I am also. I was wondering if it is the one in North Dakota? I am hoping to bring back my information for my extended family to believe I am making the right choices!!!!

Tami

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I was just reading some other responses and I just remembered something else I usually say to some of the youth I work with at the church. I tell them that allergies will kill you quickly, but Celiac is a slow painful death (OK not a good thought for us), and we won't always feel sick, but it is still making us sick. The slow painful death idea really makes people realize that it is serious.

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Clanning, I'm sorry your husband is not supportive. Mine is ok with rice noodles etc. but it sure it difficult...sauces, gravy etc. I made brownies with a gluten-free mix and put apples and peaches in the middle of it. My kids loved it. They said it was better than regular brownies. However, I almost cried today when my husband and I went to my favourite Chinese restaurant and everything they made was marinated with KIKOMAN soya sauce. I asked if they could make me something with my no name brand soya(gluten-free) and they did. They said next time I come I could ask for that too. I was so happy! I almost feel like a regular person. I have been gluten-free for 6 weeks but it is manageable if you can find a gluten-free bakery and bake some yourself. Good Luck. If I were you I would serve them all rice pasta and other gluten-free things. My family is used to lots of gluten-free food here.

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I was just reading some other responses and I just remembered something else I usually say to some of the youth I work with at the church. I tell them that allergies will kill you quickly, but Celiac is a slow painful death (OK not a good thought for us), and we won't always feel sick, but it is still making us sick. The slow painful death idea really makes people realize that it is serious.

My family has become supportive, mostly after reading about celiac disease online. What bothers me is, my Dr. has said 2 wrong things to me recently. One, that if I was having trouble with the gluten-free diet, I could go off of it, as Celiac never killed anyone! :o And I'm slowly gaining weight, when I didn't need to, and she said I shouldn't with Celiac, as they always lose weight on this diet! Not from what I read! Just not having diahhrea alone, is enough to make me gain! That and the higher protein levels I've been eating. And with the fatigue, I'm not as active. I've only gained 2 or 3 pounds, very gradually, but wanted to lose a few, instead.

I'm still trying to decide whather to try to find another Dr., one who has some understanding of celiac disease. The sad part is, there is a Dr. in this clinic with celiac disease! You'd think the whole clinic would be better at it!

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From reading this thread, I now believe that I am very fortunate! My family is extremely supportive, they all help me read labels. They don't as a rule like my gluten-free foods, but that's ok with me. My GI doc was satisfied that I knew what celiac is, and how to deal with it, so he leaves me alone about it. If I have questions, I don't wait for him to find an answer, I look it up and ask on here instead. This board is a wonderful blessing for me, I get a wide variety of solutions to a problem. Between my biological family, and my board family, I am most fortunate!

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I am also discovering how wonderful and understanding my family has been. My husband helps out at resturaunts and at home and my oldest son now reviews all the food I buy for myself since he finds items that I miss. I have my own shelf in the fridge and everyone leaves my "special" (i.e., expensive) food alone. Even if it sounds much better than theirs like my cashew butter (since I am peanut intollerant)! Occasionally they will joke about contaminating me (kiss) or my food but, that is all it is, just a joke. They have been truely supportive. They also see the difference in my well being and notice how horrible I feel after an accidental contamination! I am really fortunate and wish it could be that way for everyone.

Ditto to Plantime

-Kate

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Hello Stacy,

my husband had the same reaction first. Then i found something to compare it for him, although it's not the same. He has an allergy against different kinds of pollen. Well, i said to him, if i put only one pollen into your nose and expect you not to sneeze. That would be quite silly, wouldn't it? Mostly he says yes. And then i say, see, that's the same with gluten, if it's only a breadcrumb, it makes me sick.

And @ Charlotte: I don't think it's fair. I wonder how much they suffer, if you're not there anymore. It's very easy to speak out mean words and not notice it. I wonder, if they know how much they hurt you with that. It's not your fault either, that you're sick. And how can he say "you do what you want, it's your life". Even if you wouldn't want to eat glutenfree, you had to. It's not a choice you can actually make. As your husband he should support you better. You love each other the same. In good times and in bad. My mother (and i'm pretty sure, she's celiac too) had breast cancer earlier in life. And i'm pretty sure, that my dad's behavior did it's part to cause the cancer as well. He loves her with all his heart, but sometimes he just makes/brings her down or offends her (also in front of friends) without noticing it with his stupid behavior and that's why she's depressed all the time. And what you wrote about your husband reminded me of my dad. The very same pattern. Just stupid. My advice, just cook something out of your glutenfree cookbook and don't tell your husband it's glutenfree. Do that for several weeks and keep on saying nothing. Sometimes they don't even notice. And once he notices you can counter and say that you fed them glutenfree for a month (or how long you did till that time) and they didn't even notice. Then he can't say anything anymore, because if they didn't complain before, they obviously liked it. Or you cook one glutenfree and several gluten meals. When i have a free day and i have time to cook i cook a little bit more for myself and put it in the freezer. So i don't have that much work, once my husband likes something else with gluten. And besides, they should be glad, that they have the opportunity to eat healthier, because that's what glutenfree food is and that you also care about their health. In my head i hear my mother-in-law speak to my husband: Suck it up!!! It's good to have the mother-in-law on your side...lol.

And there's also no kiss after glutenbeer.

Lots of greetings to all, Stef

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I am the only celiac disease in my family. My sons (19 & 18) say they would kill themselves if they get it... hopefully they are only kidding (eeek!) ~ my daughter, who is adopted, always asks, "Mommy, will I not be able to eat pizza when I become a Mommy??" I have to assure her that she is fine & chances are will NEVER get celiac disease because she is adopted... and doesn't share my genes! I usually cook one meal for them and one for me. I also tend to cook things that are naturally gluten-free ~ meat plain on the grill, etc. My husband is very understanding and never rolls his eyes or is embarrassed when I have to go into great detail when ordering in a restaurant, etc. It takes time... after a few years it will just seem "normal" to you and your husband. After the kids are all gone (2 down, 1 to go) I am sure I will have a totally gluten-free household. That will make life a lot easier! PTL!! No cross contamination issues. :)

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:D i have to add to this section--my oldest son didnt understand why i thought i was special--i had a dish of margarine in the fridge with "mom" on it and he told 1 of my other son's that "mom is being stupid" :( --the other son told him that i was not being stupid and that he is allowed to use my butter, but that he had to be sure there was no double dipping and that taking care of myself was not stupid-------my man and i went to a Boston Market Restuarant that does have gluten-free items on its menu and we ordered our meal--i told the girl that i did not want a biscuit on my plate and she told me it comes with the meal--i repeatedly told her no biscuit--my man stepped in and told her, "she said--no biscuit--she doesnt want the biscuit, she can not have biscuits and if you will not serve her meal without the biscuit, then we will eat elsewhere" :angry: ---hehe, i got my meal, minus the biscuit and i might add, it was very good----he is very supportive of me and reads ingreds too ;) --like the day we bought coffee making sure we had regular and when we left and took a drink we realized it was not reg, but still good----WELL, it was hazelnut and i suggest no one with celiacs ever drink it--i was so sick in such a short time and he felt so bad :unsure: ---by the way--my man always brushes his teeth before kissing me after eating something he knows i cant have----what a sweetheart i have found :D
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Side question: Are flavored coffees not gluten-free?? I drink Gevalia's flavored coffee ~ have not noticed a reaction, but that doesn't mean anything. Anyone know if they are gluten-free?? Thanks for the help!!

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<_< i doubt that all flavored coffee has gluten, i just go by my motto: if in doubt, go without :P --my sister told me to stay away from most flavored coffees and i never get cappahino either--i just know the only thing i had that could of made me that sick was that coffee and we cant be sure it was hazelnut, but that is what we were thinking--i didnt even drink most of it cause i dont like flavored coffee--there wasnt anything else i had that would make me sick--at that time i wasnt eating much of anything--cottage cheese and fruit was about it and my peanut butter on caramel corn cakes ;) i know it was that coffee and i dont even know what brand it was--we got it at a hess station in ronkonkama, that's all i remember :rolleyes:
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I was so scared when my husband was diagnosed with celiac disease that I no longer buy gluten foods (except: Lean Cuisine frozen for myself and my whole wheat bread which the opening is tied up tight and I clean off the table after I make my lunch for work with it. ) If I can buy the same product gluten-free I do so. It helps keep the kitchen sane and reduces accidental gluten poisioning of my husband.

So my recommedation to the original poster is when you go food shopping select with YOU in mind.

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I'd never advise you to drink flavored coffee without checking but every single flavored coffee I've ever checked on has been gluten-free.

richard

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    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
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    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
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