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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.

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31 posts in this topic

So I have family in town who I have not seen in a while. They are all nurses. They know I'm gluten-free. My one cousin had very similar issues to me but she had d and I have c. We had a rather heated debate about gluten. She said that gluten is NOT my problem. She said it's probably my gallbladder ( she had hers out) and ghat I have just a "sensitive stomach". I feel like I need to prove myself over and over. My unsupportive husband just feeds right into this "it's just IBS, and you have a sensitive stomach" thiing. I said that when I don't eat gluten I am able to go to the bathroom and when I eat it I'm stopped up. She suggested a stool softner every day. Colice and something else is all I need to get myself "regular". We got take out from a restaurant that is not gluten-free and probably has never heard of gluten. I got grilled fish. I had some French fries knowing they had a shared fryer. I just had gluten on Monday and still don't feel great. My stomach is still killing me. I ate my dinner and my lips went numb. I pointed that out, and she said if was because my dinner had some spice to it. My stomach us still killing me. I had to end the conversation just because it was getting heated. She thinks I should eat gluten for 3 months to have labs again.

I'm exclusively breastfeeding my 7 week old. He breaks out in awful rash on his face( looks almost like acne$ when I have gluten. He gets congestion and a diaper rash. Once it's out of our systems it all goes away.

I asked her to explain the mucus and blood. She said it was all due to constipation.

Why do I feel like I'm always fighting. I told her gluten gives me anxiety. She told me it's my childhood giving me anxiety.

Ugh. I'm so miserable and frustrated.

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I feel so bad for you....it's hard to not be taken seriously. People in the medical field are absolutely the worst people to try to convince that gluten sensitivity exists. Next time, I would simply say that there is so much ignorance and misinformation surrounding the topic, you'd prefer not discuss it. Your health and your baby's health are both more important than the need to prove anything to those imbeciles.

You have ALL of us in your corner!

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How frustrating. You have to remember that just because you're related to someone does not automatically make them your friend, or even someone you would want to spend time with. I agree with Rosetapper that a quick subject change is in order if you want to hang out with these people again.

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I just had my gallbladder out this week. Your relative should do the research--gallstones are often caused by undiagnosed celiac. Mine was too far gone to save it, but I'm sure others could save theirs by going gluten-free. Stick to your guns and don't eat gluten. Don't let your relative push you around. I've had the constipation and anxiety etc. Life's too short to eat food that makes you feel like crap every day.

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"Your ignorance only becomes my problem if I am stupid enough to let you anywhere near my food or my son's food. And I'm far from stupid."

Sorry about your situation. Hopefully you will be able to keep yourself and your son safe in the years to come and remember that you know your body best, and you don't need their permission or approval to feel good and be healthy.

Good luck.

ETA: And for one of many examples why just because someone works in the health care industry doesn't mean they are knowledgeable or helpful...

Friend (to her sister-in-law, a nurse): "Do you know the name of a good doctor to see about thyroid problems? I have hypothyroidism and my daughter seems to be displaying some of the same symptoms."

Nurse: "Thyroid....isn't that where you just get really fat? I wouldn't bother worrying about it."

*Note - this nurse has claimed that she has hypothyroidism also..

Edited by 11475
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Don't let people like that make you doubt yourself and eat things that you shouldn't. I had that problem with my husband. The only way to convince him was to get better. I had to stick to my diet despite him. With the improvement in health he got on board. I guess you can't blame them if you have been sick a long time and trying this and that. It is hard when your symptoms aren't immediately apparent to others. After I managed to convince him with my improved health, he agreed to gluten free household and things got even better.

Let them talk and ignore them. Be stubborn. Eat what you want. You could avoid the whole thing with "no thank-you", "I'm not hungry" etc. Maybe the pediatrician will say that if eating wheat gives you nursing baby a rash that you shouldn't while nursing. Then you can just bring that up.

Good luck.

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Why do they care what you eat? (And why do YOU care that they care?) If you didn't like fish, for example, would they all still be so obnoxious? I think they're all acting like bullies and you should tell them to *********.

The cousins you don't have to deal with, but the hubby, next time he says something ask him why he doesn't want you doing something that makes you feel better? Fine, let him think it's ibs, but one of the treatments is finding out what foods trigger it, and for you, that's gluten.

http://www.ibstreatmentcenter.com/3_c.htm

http://www.ibstreatments.com/ibs-treatment-dietary-therapy/

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Ah, just tell them the subject is off limits. I would have been inclined to tell them to shut up. I'm sorry you are feeling unwell. Hopefully it passes soon for both you and baby.

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Sorry they're giving you such a hard time. Just think of it this way--they most likely don't want to admit that YOU have problems with gluten because then they have to admit THEY may have a problem with gluten too.

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Sorry they're giving you such a hard time. Just think of it this way--they most likely don't want to admit that YOU have problems with gluten because then they have to admit THEY may have a problem with gluten too.

Bingo! You have to really wonder why they are all so riled up about what you choose to eat--and what you don't. Do what you need to do to feel well for both you and your child--come here to vent and for support.

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IMHO, nurses can be the worst - their solution for many things is to just throw a drug at it. My SIL & a friend are nurses and they self medicate a lot.

Anyway, sounds like you have to get your credibility back. Don't go eat out where you can't eat safely. Every time you eat unsafe food, they are going to sit there and say, see ! It's all in her head - she's eating it. Sure, you are ill afterwards but they will say that is in your head too.

I got tired of being sick, feeling ill, wanting to just lie down and tell everyone to go away. I am very strict on my diet. No one ever sees me eat something that isn't safe because I don't. After seeing that I followed this religously, passing up food, even not eating in restaurants (watching others do so) - well, they started to take me seriously. My brother & SIL took us to a pizza place for Christmas...only pizza & a salad bar. I had a couple of glasses of wine & watched everyone eat. Yee-ha....but I didn't get sick. I have taken food into restaurants.

Part of the problem out there is that people 'play' at being gluten free. Many folks say they aren't eating gluten & then do so - somewhere a doctor has told them not to eat it or they think it will make them feel better but they aren't really gluten-free. We all know it takes a lot of sleuthing & planning to truly eat gluten-free.........and we know how ill we get if we screw it up ! People think that is what we are doing.

Get your credibility back - avoid gluten like the plague, or like it's a poison - stick to it, don't argue with anyone, just do it. Set the example....good luck.

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You need to get an internal loci, right now it is external. Your self worth is tied up in other persons' opinion of you, you feel the need to "prove" yourself to them. It is time to STOP that behavior, if that means counselling, so be it.

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It does certainly suck for people to not take you seriously.

If they don't like how you eat, that's their problem, not yours. I'm a people-pleaser and find it hard to not care when someone is criticizing me, but sometimes I know you have to just let it pass and try to not worry about it.

I do have to ask - if you knew they had a shared fryer - why order the fries? Was it to let them see what gluten did to you?

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I didn't realize the shared fryer until mid order. Maybe it was the few glasses of wine, or the fact that I wanted fries so I put my stupid blinders on.

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I have before and after pictures of myself and my daughter on my iphone. If someone really wants to get into with me I just whip out the pictures. And they are not pretty. The fact that my daughter and I both had such physical outward reactions to gluten/dairy/corn helped my husband get on board, but he was resistant at first.

And nurses...UGH! Both my doctor and my daughter's pedi are completely supportive, but between the nurses at the pediatrician's office and the school nurse, I get driven crazy. It's just that tone..."We don't have any records of an allergy on our files. Oh, so you SELF diagnosed?" It drives me insane. I feel like just because the medical tests aren't sophisticated enough to diagnose something then it automatically disproves it. My poor brother who is sooooooo sick tested negative for celiac so his GI doctor told him to keep eating gluten. Meanwhile my mom, daughter and myself have completely turned our lives around my trusting in our own bodies wisdom and not trusting the doctors anymore.

(No disrespect to any nurses or doctors here)

I try and keep as low key as I can about eating gluten free. I'd just continue to come here for support. I just don't know that it's possible to get this unless you're going through it yourself.

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I agree about low key. Looking back at their visit I heard myself say " yep. Eating my gluten free waffles. " or " mmm this gluten free toast is great". Always drawing attention to it. Part of me just didn't want them to think I was eating regular waffles or toast while I made them pancakes etc

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I agree about low key. Looking back at their visit I heard myself say " yep. Eating my gluten free waffles. " or " mmm this gluten free toast is great". Always drawing attention to it. Part of me just didn't want them to think I was eating regular waffles or toast while I made them pancakes etc

Are you making pancakes with regular flour in your kitchen??? I wouldn't even consider it. Wheat flour does not cross the threshold. Period.

I know that feeling about wanting to demonstrate that you're strict on the diet around family. With me, it's wanting them to understand that they can't just feed me anything or drag me to random restaurants.

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Are you making pancakes with regular flour in your kitchen??? I wouldn't even consider it. Wheat flour does not cross the threshold. Period.

I know that feeling about wanting to demonstrate that you're strict on the diet around family. With me, it's wanting them to understand that they can't just feed me anything or drag me to random restaurants.

I agree, next time they come to visit you could make pancakes with gluten-free bisquick. They are actually quite good and taste like normal pancakes.

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Are you making pancakes with regular flour in your kitchen??? I wouldn't even consider it. Wheat flour does not cross the threshold. Period.

I know that feeling about wanting to demonstrate that you're strict on the diet around family. With me, it's wanting them to understand that they can't just feed me anything or drag me to random restaurants.

Me either. If I am cooking for guests in my house it is all gluten free period! (Hubby does still eat bread and cereal and will allow parents to eat bread if extremely careful). But as far as flour is concerned it was banned from the house three years ago! I made buckwheat waffles for everyone last week and my parents loved them. I also use the gluten free bisquick mix and it is always a hit.

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I feel the exact same way. Its like everyone thinks I'm making this up. I dont want this for myself. This is not something I woke up one day and decided....'ahh I think I'll pretend I feel like crap every single day and be crabby'

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I don't cook gluten food, either. If I can't eat it, I don't see any reason I should cook it. I make lots of perfectly edible and delicious food, and if someone wants gluten food instead they can darn well make it themselves - and NOT with wheat flour in my house. Skylark is right; the stuff gets into everything!

I agree with Michelle, too - WHY do folks think ANYONE would pretend to feel sick as a dog just to avoid eating all the foods they love?! It makes no sense!

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Sometimes you have to self diagnose. I am a nurse and I couldn't agree more about not just nurses but the medical field in general. I felt the same skepticism when a nurse I worked with told me about her celiac disease and cross contamination, etc. I didn't show it but I thought she was just a little off her rocker. What an ironic coincindence now that I was forced to let her educate me. My mom had been sick for about ten years with severe "IBS" Had the usual upper GI colonoscopy (but no biopsy) xrays, CT scans. Always the same conclusion....IBS Then lactose intolerant. As a last resort her MD told her to try a gluten free diet but in the same appointment told her to take fibercon daily. In support of her I decided to get educated and did a lot of studying and reading and came to the conclusion that the majority of my family are gluten intolerant. I was surprised to see the swelling in my mom's legs just disappear. I thought, WTH, I will give it a try. I lost a pound a day for 14 days as the fluid in my legs also disappeared. I've been gluten free since January and feel amazing. I have had no testing other than elimination diet. But that alone is completely convincing to me. My husband says with some sarcasm that I have "jumped on the bandwagon". It hurts my feelings and I wish I had his support but I will continue to do what I need to do to take care of myself. I wish I could get my sibs to do a serious three month gluten free trial.

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I rarely told anyone how bad I felt. I thought my 'IBS' symptoms were just part of life so I didn't really talk about it. I thought it was perfectly normal after breakfast at IHOP to spend the rest of the morning in the bathroom. Now here I sit with the old cramping and gurglin I have been happy to be without since going gluten free. There were just way too many chances for me to ingest gluten with the Thanksgiving meal. I made gluten free bread but there were also regular rolls. I made gluten free pie but there were also regular pies. I tasted some pickled veggies only to be told they had "just a tiny bit" of flour in them. A simpler, healthier meal would have been so much more enjoyable all the way around and I wouldn't be sitting here suffering silently so as not to be ridiculed. Next holiday I'm doing it my way. Do you have to hit your thumb with the hammer to know that it hurts?

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I just had my gallbladder out this week. Your relative should do the research--gallstones are often caused by undiagnosed celiac. Mine was too far gone to save it, but I'm sure others could save theirs by going gluten-free. Stick to your guns and don't eat gluten. Don't let your relative push you around. I've had the constipation and anxiety etc. Life's too short to eat food that makes you feel like crap every day.

Wow! Really? I didn't know this and it makes sense. I keep telling myself that my family is being effected by gluten and they are not even aware.....gallbladder surgery has been very popular in my family. Thanks for sharing that.

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I think sometimes we have to avoid talking certain subjects with certain people. We are all entitled to our opinions and some are more free to express their thoughts with regard as to how it will be received by others. However, we have to do what is best for us no matter what someone else feels is right. You are the one doing what is best for you and the baby.....if they only realized how much harm gluten could be doing to their own bodies maybe then they would have to eat their own words. Times like these we have to be the strong one and strap on that imaginary deflective guard and dodge the darts they throw. Sorry you had to deal with that.

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