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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
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peaches102984

I Just Know He Has Celiac!

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Hi all,

My name is Casey and My Husband is Stephen our soon to be 3yr old daughter is Kyla. I have been doing lots of research on the net the last 8 month or so.

A little knowledge bout my situation......my husband started having problems alittle before our daughter was born. Sporadic diarrhea started first then months later came the stomach pain. When I was in the hospital after having a c-section he was sleeping on those uncomfortable chairs because he had to be to work at 8 pm that night and he started to cry and moan in his sleep so me and my mom woke him the the nurses rushed him to the ER. They found nothing and then he started to go to the doc. They started to tell him he had colitis and he needed a colonoscopy. He did this and it came back fine with not probs at all! They told him there are people with diabetes and people with different allergy's you just have the s$#&s. This man has been from job to job and doctor to doctor. No solid results! Half the time was in Georgia and the other half has been here in Austin, Tx. Last year he was even diagnosed with (no real reason) IBD Irritable bowl disease (chron's, ulcerative colitis) and told he would have to have his colon removed in about 2 year. This was when we was 23 @ 21 he has the colonoscopy. So we got really worried then I researched his symptoms basically 1 by 1 and found celiac disease in January of this year. He was tested but only the IgA test. It came back neg! We just could not believe this. No real answer! The one symptom that throws us is his weight. When we got together in 2003 he weighed about 180. He is now 330 and it fluctuates! He does eat gluten free but was in denial not to long ago. He is gettin to the point of eating nothin but rice. Most of which is because he says I get on him all the time about a job and stuff. I get over whelmed alot b because I am the only one that is working and we live with a roommate because we could not pay the bills and still be ok. I don't know what else to do for him. He doesn't have any energy to do anything anymore. And I know he isn't very happy about his weight because it shows! He is upset because he feels his stomach hates him.

Our daughter on the other hand has not had any significant symptoms only on 2 occasions. Both were after she ate a sub from Quiznos and a place here in Austin called Jasons Deli. I got woke up with her screaming MOMMY MY TUMMY HURTS then the throwing up started. The first time we took her to the ER and they even transfered us by ambulance to the children's hospital because they thought the had a intestinal blockage. End result they said she had a stomach flu. The poor girl threw up for 4 hours. The second time was only about 3 months later and I just knew what to expect. I keep tellin her its ok KK you have to get it out of your system. Since then the poor girl won't eat bread! So now here I am making very low money To support the 3 of us on $8.25 an hour is very difficult and I don't even get 32 hours a week anymore since new management. They lowered my food stamps from $408 to $149 because I work. HA HA HA! My husband don't work because he can't stay out the bathroom. I have to cut my insurance from my job because its too much $83 a month I need that! He needs an endoscopy done and no doc will do one unless they think its nessecary around here. I think he may have borderline diabetes also. Any suggestions? I don't get on here much. So if you could email me @ Peaches102984@yahoo.com. If you want to leave a thread I will try to be on here in the next week. I just need support and encourgement. Also some friendly advice.

thanks

casey

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The "stereotypical" celiac is underweight due to malnourishment, but many celiacs are actually overweight. One theory is that if you're not absorbing enough food, your body is in starvation mode so your metabolism plummets and you hold on to everything.

Blood tests commonly give false negatives.

And I also think it's common for one or two gluten foods to make celiacs sick while other ones don't appear to cause symptoms. Just like your daughter and the sub sandwiches, I had the same thing with pizza. I could eat several slices of bread and feel fine but pizza always gave me stomach problems.

Since you are on a tight budget, I'd recommend just trying the diet rather than pursuing more medical testing.

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Casey,

If your husband is on a strict rice diet, he probably isn't getting the vitamins and minerals that he needs. Especially if he does have celiac disease, - celiac disease creates a problem in absorbing vitamins and minerals in the lower digestive tract; especially with B vitamins, iron and folic acids. His energy loss may well be due to vitamin deficiency. The problem is, if he has celiac, and the intestinal wall isn't fully healed, he may not be able to absorb what his body needs at this point by taking vitamin pills (since the pills dissolve in the intestinal tract). He might want to try taking a sublingual (dissolves under the tongue) vitamin B12 once or twice a day for a week or two to see if they help his energy level. (The sublingual pill is specially made to be dissolved under the tongue and absorbed in the mouth, bypassing the lower digestive tract.) They may be a bit expensive at first (GNC carries them for about $20 for 120 pills, - less if you sign up for their discount program and buy them during the first seven days of the month; but you may be able to find them for less at other vitamin suppliers - just make sure that they are gluten free [check directly with the manufacturer if they don't say gluten free on the label]), but if he is in the middle of a B12 deficiency, they very well could be the difference between not having the energy to stand up, and having the energy (and emotional strength) to start feeling better. (Hopefully others here will have other suggestions on where to get gluten free B12, and some of the other vitamins that he may be lacking, at a lower cost.)

Best of luck to you, your husband and your daughter!

Pat

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Sounds like he could be suffering from anemia. He should get his iron and ferritin levels checked. For many men, including myself, if the levels are low, and there are no other causes, gluten intolerance is often the culprit.

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Dear Casey,

The test results do not always show anything. I have Celiac, but I was seronegative. Blood tests are often negative in the most severe cases, according to new research by Dr. Kenneth Fine. Your daughter is smart! She already knows that bread is making her ill.

I have some wonderful news for you. Just because your husband is Celiac, does not mean that you have to buy everything at the healthfood store. Money has always been tight for us. Naturally, I have found a number of ways to remedy that. Believe it or not, there are many things we can have at the regular store! :) Only buy what you absolutely have to at the healthfood store.

Something else I would like to mention is your husband and child can get sick from cross-contamination. This means if you touch bread or crackers, then touch their food, they can get sick. A microscopic amount is all it takes to make me violently ill. Unfortunately, my parents just treat me like a lunatic, then complain I whine about being sick, they cannot get in the bathroom, and cannot figure out why I do not just go out and get a job. :rolleyes: Dear God, these people are idiots! So are many doctors. They tell Celiacs they are just crazy, or something of the sort.

I also should tell you that it is not your fault and you are trying. Your husband and daughter are lucky to have a wonderful, considerate person such as yourself in their life. In order for them both to be well, it is necessary that you analyze some items you may not have thought of. First of all, you need new cookware and utensils. Gluten hides in cracks and scratches. Wooden utensils particularly need to go. Wal-Mart has a great four piece set with a dutch oven, two different sized saucepans, and a skillet for only $22.88, so if you would like, I can send you a link.

Other items such as toiletries and cosmetics are often forgotten about. Toothpaste, mouthwash, hair styling products, aftershave, shaving cream, handsoaps, lotions, medications, and even your cosmetics can gluten your husband and child. Do not worry, I know of the brands that clearly label ingredients, and I can ease your mind about that. ;) I want to make this as easy a transition as possible for everyone. It is okay to be frustrated, angry, or sad. Have a good cry if need be. This is a lot to deal with.

Okay, now I have a present to welcome you to our forum. I have a list that should really help. This is overwhelming. I went through this with myself in August of 2006. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

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My step son was diagnosed with celiac this past December, and we have been told that it can be hereditary. At that time we really didn't think my husband or anyone in his family could possibly have it because we figured it would have been diagnosed when they were younger, but we didn't know much about the disease at that time. We have since read many things stating that the disease can basically lay dormant in your body even into your sixties. My husband has so so many of the symptoms that we have discovered in some of the information we have read. The symtpoms are endless, but he has several of them. I have been trying for months to get him to try going gluten free for a little while just to see if it makes him feel better at least and he has NO will power whatsoever! Even if every meal I cook is gluten free, he will get it from somewhere. I am so positive that he has it, but it's like he'd rather suffer......and make me suffer......than do something about it. I say that I have to suffer because I have to listen to his constant whining about how horrible he feels and how everything he eats makes him sick. MEN!!!! :rolleyes: Anyway, is it doing him any good for me to be cooking gluten free meals for him when he's going to eat it anyway, am I wasting time and money?

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Dear sarad1,

I know what you mean! My parents are the same way! My brother and I got the disease from somewhere! We have Irish on both sides, and both my parents are good candidates for the disease. Mom swallows four different prescription pills alone for her constantly loose bowels, on top of OTC anti-diarrheal liquid medication. She, my aunt, and uncle all had to be placed on 2 percent milk as infants due to spitting up every formula like my brother and I did.

Dad had ulcerative colitis as a teenager and young adult. As an infant, he had starvation diarrhea. Still, he cannot possibly have it and is fine. :rolleyes: I told him, he should have been a doctor he is so full of himself. I am so tired of stupid people, you have no idea! I told them both they are not allowed to whine when they end up with intestinal cancer. I have had it with their crap!

Sincerely,

NoGluGirl

P.S. I have been working on a cookbook. If your hubby loves chocolate chip cookies, I love the ones hot and out of the oven. Since I had my own recipes prior to being diagnosed, that made it easy. All I had to do was tweak them. Just PM me for the recipe!

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Dear sarad1,

I know what you mean! My parents are the same way! My brother and I got the disease from somewhere! We have Irish on both sides, and both my parents are good candidates for the disease. Mom swallows four different prescription pills alone for her constantly loose bowels, on top of OTC anti-diarrheal liquid medication. She, my aunt, and uncle all had to be placed on 2 percent milk as infants due to spitting up every formula like my brother and I did.

Dad had ulcerative colitis as a teenager and young adult. As an infant, he had starvation diarrhea. Still, he cannot possibly have it and is fine. :rolleyes: I told him, he should have been a doctor he is so full of himself. I am so tired of stupid people, you have no idea! I told them both they are not allowed to whine when they end up with intestinal cancer. I have had it with their crap!

Sincerely,

NoGluGirl

P.S. I have been working on a cookbook. If your hubby loves chocolate chip cookies, I love the ones hot and out of the oven. Since I had my own recipes prior to being diagnosed, that made it easy. All I had to do was tweak them. Just PM me for the recipe!

I have to say, I am very proud of him, he has not had any gluten all day, and for him that is pretty much a miracle! I tried to tell him that there are so so many things that he can still eat and it's not like he has to go without anything. Not to mention, he actually likes the gluten-free tapioca bread that my step son eats....so what's the big deal? I guess it's just the idea of it! Thanks for your reply, I really hope my hubby sticks with it, and finds out what is wrong with him!

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I have to say, I am very proud of him, he has not had any gluten all day, and for him that is pretty much a miracle! I tried to tell him that there are so so many things that he can still eat and it's not like he has to go without anything. Not to mention, he actually likes the gluten-free tapioca bread that my step son eats....so what's the big deal? I guess it's just the idea of it! Thanks for your reply, I really hope my hubby sticks with it, and finds out what is wrong with him!

Dear sarad1,

Congratulations to your hubby! :) Since he has been such a good boy, I have a little present for you and him to make things easier. Also, I wanted to remind you to be careful with your lipsticks and such. If you eat gluten and are not a Celiac or gluten intolerant, he can become ill from kissing you. :o This disease really can be difficult to deal with at times. There is somuch you have to think about. The list below will surprise your husband, because there are a lot of options!

I have a list that should really help. This is overwhelming. I went through this with myself in August of 2006. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

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Thank you so much for that list noglugirl! That is so helpful. I had no idea that Fruity Pebbles were gluten free and my step son has been so deprived all these months. They are his favorite! When I sat that bowl of FP in front of him at breakfast that next morning I thought he was going to cry. I even made gluten-free Fruity Pebbles treats with marshmallows....his favorite. They were gone in a day.

Thank you for taking the time to do that!

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Dear sarad1,

You are so welcome! :) I know what you mean. I have a belief that no one should be deprived of comfort food! It is surprising what we are able to eat sometimes. Thank goodness for the internet! Celiacs would starve without it. I want to make this as easy as possible for others, because the transition is so overwhelming. Feel free to ask questions anytime!

Sincerely,

NoGluGirl

P.S. If you need a recipe for chocolate chip cookies like Tollhouse cookies, just ask! I am working on a cookbook.

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Hi all,

My name is Casey and My Husband is Stephen our soon to be 3yr old daughter is Kyla. I have been doing lots of research on the net the last 8 month or so.

A little knowledge bout my situation......my husband started having problems alittle before our daughter was born. Sporadic diarrhea started first then months later came the stomach pain. When I was in the hospital after having a c-section he was sleeping on those uncomfortable chairs because he had to be to work at 8 pm that night and he started to cry and moan in his sleep so me and my mom woke him the the nurses rushed him to the ER. They found nothing and then he started to go to the doc. They started to tell him he had colitis and he needed a colonoscopy. He did this and it came back fine with not probs at all! They told him there are people with diabetes and people with different allergy's you just have the s$#&s. This man has been from job to job and doctor to doctor. No solid results! Half the time was in Georgia and the other half has been here in Austin, Tx. Last year he was even diagnosed with (no real reason) IBD Irritable bowl disease (chron's, ulcerative colitis) and told he would have to have his colon removed in about 2 year. This was when we was 23 @ 21 he has the colonoscopy. So we got really worried then I researched his symptoms basically 1 by 1 and found celiac disease in January of this year. He was tested but only the IgA test. It came back neg! We just could not believe this. No real answer! The one symptom that throws us is his weight. When we got together in 2003 he weighed about 180. He is now 330 and it fluctuates! He does eat gluten free but was in denial not to long ago. He is gettin to the point of eating nothin but rice. Most of which is because he says I get on him all the time about a job and stuff. I get over whelmed alot b because I am the only one that is working and we live with a roommate because we could not pay the bills and still be ok. I don't know what else to do for him. He doesn't have any energy to do anything anymore. And I know he isn't very happy about his weight because it shows! He is upset because he feels his stomach hates him.

Our daughter on the other hand has not had any significant symptoms only on 2 occasions. Both were after she ate a sub from Quiznos and a place here in Austin called Jasons Deli. I got woke up with her screaming MOMMY MY TUMMY HURTS then the throwing up started. The first time we took her to the ER and they even transfered us by ambulance to the children's hospital because they thought the had a intestinal blockage. End result they said she had a stomach flu. The poor girl threw up for 4 hours. The second time was only about 3 months later and I just knew what to expect. I keep tellin her its ok KK you have to get it out of your system. Since then the poor girl won't eat bread! So now here I am making very low money To support the 3 of us on $8.25 an hour is very difficult and I don't even get 32 hours a week anymore since new management. They lowered my food stamps from $408 to $149 because I work. HA HA HA! My husband don't work because he can't stay out the bathroom. I have to cut my insurance from my job because its too much $83 a month I need that! He needs an endoscopy done and no doc will do one unless they think its nessecary around here. I think he may have borderline diabetes also. Any suggestions? I don't get on here much. So if you could email me @ Peaches102984@yahoo.com. If you want to leave a thread I will try to be on here in the next week. I just need support and encourgement. Also some friendly advice.

thanks

casey

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I know how frusterating a diagnosis can be to get and how expensive the gluten free diet can be.I was recently diagnosed with celiac,but it took the doctors 5 years to find the celiac disease and by then i was severely dehydrated and anemic.I spent a week in the hospital with really severe diarhea.My doctor said it was IBS and told me to stop eating thigs like tomatoes,cucumbers,seeds,and nuts but it didnt help.So one day i threw a hissy fit on my doctor and demanded he find the problem before i died from what was attacking my body.Of course he didnt agree.But he went ahead and did the bloodtest and a biopsy of my intestinal tract both came back positive for celiac.This disease almost wrecked my life and almost costed me my home,because i missed so much work from being so sick and missing work.6 months later i am still struggling to ctch up on my bills.I try to eat things like plain hamburger,grilled chicken,mashpotatoes,and i love spaghetti made rice noodles,and macoroni and cheese made with them.I have had to do alot of research to find what i can eat safely.Feel free to write me at reginaarmes47@yahoo.com.I recently found out all pepsi and coke products ar gluten free,as well asV8 drinks.

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    • Appreciate the thorough responses.    The stomach issues have been dreadful the past few weeks and brought hurrendous awakenings.the worst I have slept in a long time. I have had a few gluten foods in all honest. Maybe a mcdonalds twice in 2 months. Which isnt ideal. But I dont seem to feel anything afterwards (terrible excuse I know)  My biggest worries were my memory and cognitive behaviour! I was in London Bridge station and forgot where I was heading for 15 minutes. My memory is terrible, as is the concentration. So its a bit of a battle at the minute and I am flunking in my new job. I feel like as you said, neurologically I have deteriorated. Wit and brain function out the window. Considering I was a pretty switched on person. Balance and diziness at points. (all this on a gluten free diet after 4 months triggered me too my mcdonalds binge) ha ha.  I think the memory was the worst.    As you said about the brit medical side being useless. I think you are correct. I understand its the NHS and free etc. But this is just not considered a worry. Ive considered pulling myself into A and E this past few weeks because of the pain and I know this is the only way anyone will give me a thorough look over. I was also sent for a bone scan ( no reasoning as to why) But from research it seems to be for searching the nutrients in the bone?    Neurological side has been really i think what has been the toughest. My job requires an awful lot of high concentration and memory. Which when I fail at, causes stress, and then I am caught in the vicious cycle! Thanks for the help guys. Nice to meet some fellow people who can relate. I just feel like celiacs seem to know more then the doctors, which shows primitive practice in order to solve it. Once again, I would never know the NHS or doctors. I understand free health care is health care. But how low on the list this is, is a worry.    
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    • Hi everyone,  Once again I am here looking for your help. I was diagnosed with Celiac less than a year ago. It took quite a while to find out because I didn't experience any particular symptoms after eating gluten. I was always tired, had memory problems and was frequently ill; sometimes I had gastrointestinal issues, but they came and went.  Last night I went out for dinner, to a Thai place I trust(ed). Later, I could hardly sleep, I had horrible nightmares, those where you can hardly tell apart when you are awake or not. I expected to have high fever but nothing!  Today all my body aches, I am very tired and was nauseated all day. A little bit gasy and bloated as well.. Was I glutened?? Did I already clean my body enough that I now start to react in this fashion? If so, why does that happen?  There is also gastroenteritis going around, that would be the alternative explanation. I thought I excaped it. I also didn't vomit or have diahrrea like the rest.  What do you think?
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