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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.

Oh Your Doing That Gluten Thing?
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13 posts in this topic

Ughh. I hear this a lot. " oh your still doing that gluten diet?"

My husband and I fight like cata and dogs when the gluten issue comes up. In the last 4 weeks of my pregnancy I went back to a gluten containing diet. Then about 2 weeks after the baby was born (born at 37 weeks) I started with all the symptoms again. I stopped eating the gluten ( and the fighting began again) and this is what I hear:

" your blood test was negative. You just get bloated from starches like me" ( I was gluten-free for a month prior to the test)

"I think gluten is fine in moderation. Everything is fine in moderation"

"I want to eat where I want to eat. Salads are gluten free. You can always get a salad" ( tried that theory at cracker barrel sat. Night. Still hurting and sick....but he thinks it's in my head)

Ughh. I get so angry! I'm nursing my sin who is on reflux meds at 4 weeks old. I get gluten and he spits up, his tummy gets the glutened gurgle, and he had painful gas that keeps me up all night. But that had nothing to do with what I eat. (even my pedi agrees) its so frustrating!!!

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It must be so hard to have a spouse who doesn't even BELIEVE you, or support you. "That gluten thing" is hard enough without that to deal with too. Can't he see the proof in what is happening to the baby? Is it possible for you to change doctors and maybe find one who can convince your husband that you are indeed sick. I feel so bad for you! :(

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Ughh. I hear this a lot. " oh your still doing that gluten diet?"

My husband and I fight like cata and dogs when the gluten issue comes up. In the last 4 weeks of my pregnancy I went back to a gluten containing diet. Then about 2 weeks after the baby was born (born at 37 weeks) I started with

all the symptoms again. I stopped eating the gluten ( and the fighting began again) and this is what I hear:

" your blood test was negative. You just get bloated from starches like me" ( I was gluten-free for a month prior to the test)

"I think gluten is fine in moderation. Everything is fine in moderation"

"I want to eat where I want to eat. Salads are gluten free. You can always get a salad" ( tried that theory at cracker barrel sat. Night. Still hurting and sick....but he thinks it's in my head)

Ughh. I get so angry! I'm nursing my sin who is on reflux meds at 4 weeks old. I get gluten and he spits up, his tummy gets the glutened gurgle, and he had painful gas that keeps me up all night. But that had nothing to do with what I eat. (even my pedi agrees) its so frustrating!!!

All of the other above you will have to work out.

But your baby definitely CAN be affected by your diet. Milk, milk protein, etc. I know, they say certain proteins are too big to pass into breastmilk - yadda yadda.

My son was on reflux meds at 2 weeks. I got off milk, soy and it was so much better for him. Got him off the meds. He refused bm when I ate chocolate, spicy foods. Geez. Yes, gluten can be affecting your milk - even if it's just that your body produces something that changes your milk when you eat gluten.

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Sorry to hear that. I get it from my friends a little bit and the checker at the grocery store the other day said, "I don't get this gluten free thing, isn't whole wheat good for you?" My friends were just being typical guys, we are supposed to be silent suffers for some reason. I would hear, "You really aren't going to eat pizza or drink beer anymore?" I would just say, there is gluten free beer and gluten free pizza but I feel a lot better so I really don't care. My wife though has been unbelievable. Not only has she gone gluten free with me, she will stand up for me to anyone who questions it (she doesn't back down from an argument while I hate confrontation). But, the main part of that is I have know her for 10 years. Most of that time I was active, running half marathons, lifting weights, full of energy, easy going. Then I was always sick, couldn't exercise, tired, and anxious and short tempered instead of easy going. She knew I wasn't myself and now I am again. When anyone questions it she says, "Not only does he have it, he was really really sick for a long time. He is a completely different person on gluten." I love her. Did your husband know you before you started showing symptoms? If so, he should see it isn't in your head. No one can know what is going on inside your body except you. Ask him if he trusts you to not exagerate what you are experiencing and support you. My wife says she feels better gluten free and maybe she had an intolerance and didn't realize it. Who am I to tell her she doesn't feel better?

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I wish I had good advice except to encourage you to stand up for yourself and your baby. YOU deserve the best health possible, and your son deserves to have someone stand up for him. I was a sick baby and grew up to be a sick adult, and my parents were just unaware of what was making me sick. You've got a huge advantage knowing what's making your son unwell. Babies weren't on reflux meds decades ago and shouldn't grow up on them unless there's nothing else that gives relief. He's going to get anemia, or asthma, his growth may be stunted... Etc. I hope your partner can be reasoned with: there's a lot of great resources here and he should want you and his new child to be happy and healthy for a long time!

if he wants to eat somewhere, let him, I say. Cook yourself something simple and gluten-free and enjoy alone time or baby time. I know it's easier said than done, but food is like medicine. And way safer, if it's gluten-free! ;)

I hope you can feel better soon. It makes me sad to hear someone gets relief from a gluten-free diet but don't have the ability or support system to follow it. gluten-free food is way more convenient and much cheaper than the resulting health problems from untreated celiac. You're worth it.

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So sorry you're having trouble with your hubby. That's the worst.

" your blood test was negative. You just get bloated from starches like me"

Okay, OMG, ha. I get this from my husband about onions and bell peppers. Getting bloated from starches is, actually, completely NOT normal. If he gets bloated from starches, he's got a problem with starches - sensitivity, intolerance, something.

In the modern world, we hear so often: X food just doesn't agree with me, or X food gives me gas, and we think that this is normal. The one thing I've learned after finding out about all our food issues is that people whose bodies DON'T have problems with these foods? They don't have issues with it 'agreeing' with them or giving them gas or bloating. The only people who seem to have trouble with it is the ones whose bodies are reacting inappropriately somehow to it.

Funny how we're taught that all sorts of ill health is somehow normal, so we never try to get rid of it. :rolleyes:

"I think gluten is fine in moderation. Everything is fine in moderation"

Except, you know, arsenic, poison, foods that give you anaphylactic shock...or foods that damage your body so badly that you might as well have eaten a little of the poison anyway. My husband's best friend is this way. He's 'offended' on my husband's behalf that I won't 'eat just a little' and go out to more restaurants with my husband, whether or not they have any gluten-free food. Very frustrating attitude.

So sorry the baby is having trouble.

Theoretically, I've wondered about if our antibody levels could have any affect. I mean, we know that breastmilk is supposed to be chock full of various antibodies from us, right? And if you are making antibodies against gluten, and your child gets your antibodies in the breastmilk, perhaps that is making the baby react? Might not even be that they react to gluten, but that their body is using the antibodies that your body is providing? Maybe there can be difficulty with the heightened levels of of the antibody in your body, especially as they are usually concentrated in the breastmilk.

That's honestly just a complete and utter guess. I know that IgA and IgG are both in breastmilk, so it's made me...curious. I don't know that it's ever really been studied, however. I've never seen anything on it. Just wonder how it would translate for little ones exposed to it, you know?

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In the modern world, we hear so often: X food just doesn't agree with me, or X food gives me gas, and we think that this is normal. The one thing I've learned after finding out about all our food issues is that people whose bodies DON'T have problems with these foods? They don't have issues with it 'agreeing' with them or giving them gas or bloating. The only people who seem to have trouble with it is the ones whose bodies are reacting inappropriately somehow to it.

Funny how we're taught that all sorts of ill health is somehow normal, so we never try to get rid of it. :rolleyes:

"I think gluten is fine in moderation. Everything is fine in moderation"

Haha, yes. 18 months ago my mum said "don't be silly, everyone gets stomach aches". But I think she's getting tired of updates from the world of non-stomach-ache land and I might be able to convince her to join me here :)

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I'm sorry to hear that you don't have support at home. The only advice I have is stick to your guns and do what makes you and your baby feel better. Your ped is flat out wrong. What you eat sure does affect your baby. I breastfed both my boys. First one I had to eliminate dairy only. It caused him horrible colic. Second one was trickier. I eliminated dairy, oats, tree nuts and rice. He would get bad colic with dairy, rash on his head from oats and rice (it also aggrivated his reflux) and hives from pecans. He was put on reflux meds at my insistece at 7 weeks. He and I were miserable. He still had bad reflux that eventually irratated his lungs and he was on breathing treatments for almost two years. I didn't know about gluten then. I was diagnosed when he was almost four and he was doing fine and off all meds then. In hindsite I discovered (2 1/2 years later however) that I started having problems with gluten when I was at the tail end of breastfeeding him. I was very "gluten light for the first 12 months inadvertantly for him. Looking back gluten was probably the cause of his horrible reflux too. He was diagnosed with celiac last year when he was five. Now he has dental enamal defects on his permanant molars he cut this year. One came in with a cavity! I'm hoping his front teeth will be spared. So do what you think is best and right for your baby. If you were gluten free for a month before testing, that may have been enough time for it to affect it. You also could be a seronegative celiac or gluten intolerent. It really doesn't matter the treatment is the same. My oldest we believe to be gluten intolerent. All his testing, bloodwork and biopsy, negative. We decided to put him on a trial of gluten free to see how he would respond (I worried about his tummy aches, paleness, slow growth, lack of regularity and hx of constipation). His color has improved, he is going to the bathroom every day or every other day now, gained two pounds since the end of July and not complaining of tummy aches. He will do a gluten challenge in Dec. and hopefully we will have our final answer despite the negative testing.

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Thanks for all your replies and support. I honestly think both my other boys have problems with gluten. My oldest has the allergic shiners. Skin testing was negative. He refuses sandwiches etc. For lunch he has an apple, yogurt, and celery. My middle one was tested. Who knows if my pedi even ordered the right tests. He has the pale color, tummy always upset, irregular, sleep issues etc. He's underweight, and still has cradle cap at 4. No one agrees with me. They think I'm making them sick. My middle son had severe allergies to milk and eggs when he was a baby. Reflux meds also bye was miserable. We all were. His dr said he didn't want to see him sick any more because he's there whey other week with a sinus infection. He has been on a z-pack as much as I have in 30 years it seems. My pedi said to take gluten out of his diet and see how he does. No one supports me, so if I'm not there he gets everything. It's not fair. Unless there are positive blood tests, there is not going to be any support.

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This is my experience. When others literally trample my boundaries by telling me their version of my reality I tend to cut them off (which clearly you cannot do). I have been sick for so long. If someone does not get it it is not necessarily up to me to teach them. I have a great deal of work to do maintaining my own health.

I do agree with a previous poster that those that tend to minimize or invalidate my health challenges seem to be people who may have their own food challenges.

I am a flight attendant who lugs around a cooler full of food. About 50% of the people I work with could care less. The other half? Wow - lol. Amazing comments - "you think you are so healthy." - eye roll "you are so good (nasty tone)" - eye roll "why are you on a diet - you are so skinny (nasty tone)?" eye roll...last week I told a coworker - "hey, you know an eye roll is a form of emotional abuse?" haha

I really do not have any advice - you have a beautiful child and your husband does not seem to grasp the import of diet. I sincerely hope that your husband will come to accept that your diet has nothing to do with his(or that he tries your diet and realizes he feels fab :).

The truth is we are all making amazing efforts to better our health and our lives. Yay for all of us.

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"I think gluten is fine in moderation. Everything is fine in moderation"

Really? ? Deadly nightshade? Arsenic? Digitalis? Fine in moderation my foot!

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So,OP....let us look carefully at your situation. You have a spouse that is purposefully putting you and your children in physical danger. If he were battering you, would you stand for it? I hope not.

This is no different. Please get into counseling to help you learn how to deal with this man, or find other, healthier living quarters.

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Maybe, sometime when you are not fighting or dealing with food, you may need to tell him you need his support. I have a problem thinking everyone is intolerant to gluten and I want everyone that I think has a problem, (including my husband) to quit eating that poison. And my husband thinks I am a little radical in my thinking, but is very supporative and protective of what I am eating. There have been others issues that I just say, "Hey I don't need your criticism, I need your support"...he then gets it. Communication might be the answer for you.

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      I agree with everything cyclinglady said. You need to be tested BEFORE you go gluten free!!!!!! I was just reading an interview with Joseph A. Murray, MD who is head of the celiac dept. at Mayo Clinic & one of the top celiac experts & researchers in the world. He talks about this subject of going gluten free before testing many times during this interview. It's interesting reading. Please take a little time to read it all the way through. http://www.medscape.com/viewarticle/820397_3
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