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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

My Daughter's Symptoms. What Do You Think?
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Hi. During this summer my daughter started feeling nauceus. She also was having sinus problems. In August she started vomiting after eating and had heartburn. Her doctor was out so she saw another one. The new doctor said it was a sinus infection and Gerd. She can't tell when she is hungry and says she is always full. She had diarrhea, but now is always constipated. I took her back to her original doc and he thought it was her gallbladder and sent her to the gastro. She lost 10 lbs during this time and has not regained it. She weighs 125 now. She had an endoscopy in Sept. and her gastro said she has too much acid in her stomach and is a little inflamed but no ulcers or anything else. He did not look for celiac. Another doctor ordered an ultrasound to check her liver, gallbladder, kidneys, and pancreas. All fine. All the doctors said she is very pale, but blood work is neg. for anemia. She wants to sleep a lot because she is always tired. She also is cold all the time. Her doctor tested her thyroid. It was normal. He tested her for H. Pylori. It was negative. She gets sick when she eats these foods wheat, apples, bananas, pineapples, oranges, milk and sugary foods. I asked her doctor about food allergies or intolerances, he said she should have outgrown that by now. She is 17. I took her off gluten in Sept. because I didn't know she needed to continue eating it before being tested for Celiac. She felt a little better, but is still nauceus. Gastro put her on Reglan, Nexium, Levison, and Phenegran. She was already on Zyrtec for allergies. She gets dark circles around her eyes. She is always complaining about pain in her left upper side and is always belching and has a lot of gas, bloating, pms. The new doctor is stumped and wants her to see another gastro. She has missed a lot of school because of the vomiting. I am not sure what to do now. She won't take the nexium because she says it doesn't help her. Any ideas. Sorry this is so long. Thanks in advance.

I forgot to mention that her first doctor that she had when she was little used to measure her spine because he said she wasn't growing properly but he chalked it up to her being small because I am short. I am 5' 2". She is 5' 3.

My mom also has IBS and other problems and her mom had stomach problems and Osteoporosis.

My question is should she continue with the gluten free diet or do you think it is something else?

Thank,

Claudia

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She gets sick when she eats these foods wheat, apples, bananas, pineapples, oranges, milk and sugary foods. I asked her doctor about food allergies or intolerances, he said she should have outgrown that by now. She is 17. I took her off gluten in Sept. because I didn't know she needed to continue eating it before being tested for Celiac. She felt a little better, but is still nauceus.

Hi Claudia,

The idea that everybody "outgrows" their intolerances in childhood is ridiculous... I'm 32 and I just discovered this year that I'm intolerant to gluten and corn!

Getting her off gluten was a great idea. I'm sorry it hasn't helped more, but here are some ideas that come to mind:

1. She could have more intolerances. Dairy (casein) and citrus fruits are pretty common... also the starchy foods like corn, soy, and legumes which are difficult to digest. It wouldn't hurt your daughter to stop eating all the "suspects" for a few weeks and then challenge one food at a time by eating a lot of it for a few days. IMO, the sinus problems and vomiting say "casein intolerance."

2. If you want to get an idea of her risk for celiac disease you could always do a genetic test. I did mine for $174 through Enterolab. It's just a cheek swab... very easy. Considering the history of GI problems in your family, this could be very revealing!

3. Are you being careful with cross-contamination and all the foods that contain gluten? It's not just wheat... there's also rye, barley, and oats. Contamination can happen by using a shared toaster, a shared jar of peanut butter, baking with wheat flour (it gets airborne and settles on other things in the kitchen), eating at restaurants that cook gluten foods on the same grill, etc...

Welcome to the group!

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Hi, my dd, 20, had extreme PMS and found out she is gluten intolerant, in Feb. She had so much blood loss she was exhausted. Natural Doc gave her vit b's with magnesium and the pms is normal. I would get her off prescriptions if possible and follow advice in last post. She is 5' 3 1/2". Her nana is 5' and has many symptoms but never tested. DD is mostly gluten-free and never gets sick or bowel troubles, still allergic to pets. Sometimes gets bloated after drinking milk.

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Hi Claudia,

The idea that everybody "outgrows" their intolerances in childhood is ridiculous... I'm 32 and I just discovered this year that I'm intolerant to gluten and corn!

Getting her off gluten was a great idea. I'm sorry it hasn't helped more, but here are some ideas that come to mind:

1. She could have more intolerances. Dairy (casein) and citrus fruits are pretty common... also the starchy foods like corn, soy, and legumes which are difficult to digest. It wouldn't hurt your daughter to stop eating all the "suspects" for a few weeks and then challenge one food at a time by eating a lot of it for a few days. IMO, the sinus problems and vomiting say "casein intolerance."

2. If you want to get an idea of her risk for celiac disease you could always do a genetic test. I did mine for $174 through Enterolab. It's just a cheek swab... very easy. Considering the history of GI problems in your family, this could be very revealing!

3. Are you being careful with cross-contamination and all the foods that contain gluten? It's not just wheat... there's also rye, barley, and oats. Contamination can happen by using a shared toaster, a shared jar of peanut butter, baking with wheat flour (it gets airborne and settles on other things in the kitchen), eating at restaurants that cook gluten foods on the same grill, etc...

Welcome to the group!

Hi. Thanks for the welcome. Yes, I am being careful with the cross contamination. I bought all new supplies for her. She doesn't eat toast so no new toaster. I haven't done any baking with any wheat flour since she has gone gluten-free. She is scared to eat out so she just eats at home.

Can she drink dairy ease milk or should I eliminate all dairy. She is eating pizza using mozzarella cheese and gluten-free flours.

Claudia

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Hi, my dd, 20, had extreme PMS and found out she is gluten intolerant, in Feb. She had so much blood loss she was exhausted. Natural Doc gave her vit b's with magnesium and the pms is normal. I would get her off prescriptions if possible and follow advice in last post. She is 5' 3 1/2". Her nana is 5' and has many symptoms but never tested. DD is mostly gluten-free and never gets sick or bowel troubles, still allergic to pets. Sometimes gets bloated after drinking milk.

Hi. She is trying to wean herself off of the medicine, but her nausea is still bad. The reglan really isn't helping so for the last 3 days she hasn't taken it. I took her to a health food store and the lady there said she thought it was her thyroid and had us get a supplement for that and digestive enzymes. She is also taking a multi with a lot of B bitamins and a vitamin c tablet each day. They are all gluten free.

She also goes really heavy on hers, but she is tired all the time not just during that time. Is this normal?

Thanks for the reply

Claudia

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Hi. She is trying to wean herself off of the medicine, but her nausea is still bad. The reglan really isn't helping so for the last 3 days she hasn't taken it. I took her to a health food store and the lady there said she thought it was her thyroid and had us get a supplement for that and digestive enzymes. She is also taking a multi with a lot of B bitamins and a vitamin c tablet each day. They are all gluten free.

She also goes really heavy on hers, but she is tired all the time not just during that time. Is this normal?

Thanks for the reply

Claudia

For my dd the loss of blood was tremendous and she hurt so bad she couldn't sleep or think. She had cramping at other times during the month. Going gluten-free and the vitamins cleared it up.

No, not normal to lose so much blood. I thought she had all the symptoms of endometriosis. So glad she went to a good doc and didn't have to have surgery. Oh ya, she had injections of glutathione too, it was to help her liver start working better. It made her hair really greasy.

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Can she drink dairy ease milk or should I eliminate all dairy. She is eating pizza using mozzarella cheese and gluten-free flours.

Unfortunately, casein is in all cow's milk dairy products: cheese, milk, yogurt, ice cream, sour cream, whey, etc... You might try dairy products from other animals. I can eat a little goat cheese on my pizza without causing any suffering. Casein is the protein in cow's milk; lactose is the sugar. As far as I know, lactose intolerance is uncomfortable, but it's rare for it to cause lingering symptoms (vomiting, headache, sinus problems, etc...).

It makes sense to check your daughter's thyroid if she's having heavy periods and fatigue. That's one organ you don't want to mess around with! It regulates your heart rate, blood pressure, metabolism, reproductive hormones... all kinds of important things. Much better to be on thyroid hormones if you really have a problem. I wasn't diagnosed until this year, but my TSH was sky-high. The symptoms started when I was a teenager.

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Purple: Sorry to hear that your daughter also suffers like my daughter, but glad that hers cleared up on a gluten free diet and with vitamins.

Mother of Jibril: Thanks, I will take her off all dairy to and see what happens. They did test her thyroid and said it was negative. I have her on a thyroid supplement anyway to see if it will help.

She said she is feeling a little better today. She has only been on those supplements and the digestive enzymes since Wed. I hope they help her. Her stomach growls all the time. But she says she isn't hungry. This is the weirdest stuff. I am so glad that we found this forum, but disappointed that doctors don't know what it is or takes so long to diagnose it. She doesn't want to start eating gluten again to get tested. She said she already knows that it makes her sick.

Claudia

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I would ask your doctor about diabetes and urinary tract infections.

Hi SBJ. Thanks I will have her checked for those. Diabetes runs in both of our families. Her old doctor used to test her for it before he retired but I don't know if any of the others have. That's what happens when I let her dad take her (lol!) He doesn't know what to ask for or tell them.

Claudia

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Well I hope she starts to feel better! And actually I hope it is something simple like an infection that can be cleared up with antibiotics.

It is so very very important to provide every doctor with a complete family medical history. Most people don't keep one or don't have one that is very complete. It's surprising how many people don't know what conditions Uncle Joe had or what Grandpa had when he died. It's a little morbid but it is really important - especially nowadays when we have genetic testing. If your doctor has some idea about what to look for then he can do a better job. Personally, I wasn't really sure what my grandfather had when he died - he passed before I was born. But that little piece of information, combined with an email from my cousin and a trip to the dermatologist, was absolutely vital in discovering that I have a genetic condition called Lynch syndrome. Now I am better able to manage a risky condition.

So it's good practice to keep a family tree and keep it up to date with medical conditions and causes of death. It could end up saving a life. Never assume that a new doctor is looking at your child's file very carefully. I am lately keeping a file with me to bring to my doctors. I don't care if they think I'm a hypochondriac. I have too much experience with faulty diagnoses.

Best of luck!

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Update. Friday I took my daughter back to her gastro doctor. I took a list of all of her symptoms and asked about celiac. He told me that she couldn't have it because she hasn't lost a lot of weight (10 lbs lost). He told me he could do a colonoscopy but at 17 there wouldn't be anything there. He diagnosed her with IBS. I also told him that since all this began in Aug. she can't eat or drink dairy products. What does he do, he gives her two new prescriptions Protonix and Bentyl. All weekend she did not take the Bentyl or her Zyrtec because she kept forgetting it. She felt great, she even cleaned her room from top to bottom. Then she took it Sunday night and about 1 hour later she was nauseous. This morning she was nauseous and vomiting. I did an oline search of Bentyl and it has lactose. Then I did an online search of all the medicines she has been taking since this started and most of them have lactose. Even the zyrtec she has been taking since last winter. She has actually been getting nauseous since March, but it wasn't real bad. Just every once in a while until Aug. I am just going to make sure she is gluten and dairy free and see what happens. Thanks for all the help you guys have given us. I have learned a lot from this forum.

Claudia

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Claudia, your doctor apparently doesn't realize that nearly half of those diagnosed with celiac can actually GAIN weight rather than lose it. Weight loss is not necessary for a diagnosis of celiac, and is not part of its definition, anyway.

Most of us here believe that IBS is almost always (if not always) undiagnosed celiac/gluten intolerance anyway. If you check the symptoms list, it's IDENTICAL to the symptoms of celiac. The meds your daughter was given treat the IBS symptoms by masking them, not by dealing with what is causing them in the first place.

As you have probably learned already from reading on this site, most celiacs need to cut out all dairy in the first few months of gluten-free diet, as the villi lining the intestines are unable to produce lactase (the enzyme that digests milk's lactose) since they have been damaged by the celiac.

Because celiac causes a "leaky gut," what happens is that gluten and casein proteins get into the bloodstream (where they don't belong), triggering the immune system to attack them (as it is supposed to do with foreign invaders in the bloodstream), but also triggering the immune system to attack other things, like thyroid, intestines, skin, joints, etc.

So,until the gut actually heals, lactose (the sugar in milk) AND casein (the protein in milk) need to be avoided. Lactose isn't such a big deal, as you can find lacotse-free milk--but you can't find casein-free milk, and that casein will KEEP the gut from healing, even if the original damage was done by the gluten, not the casein.

Health food store ladies can be very nice, and some even know an enormous amount. However, it sounds to me like the one you saw is giving dangerous advice in order to sell her products.

If your daughter has any thyroid issues (sounds like she might), that needs to be addressed by a doctor and blood tests (TSH, T3, and T4).

Many of us here have or had thyroid problems, and they seem to be directly related to celiac.

Now, there ARE other issues that can cause the symptoms that your daughter is experiencing. But I think you need a doctor who KNOWS what celiac is so that you can either diagnose celiac or rule it out. And yours doesn't know what it is or how to diagnose it, so I really think you need a different doctor.

You might want to post a separate thread asking for recommendations for a celiac-savvy doctor in your area.

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Claudia, your doctor apparently doesn't realize that nearly half of those diagnosed with celiac can actually GAIN weight rather than lose it. Weight loss is not necessary for a diagnosis of celiac, and is not part of its definition, anyway.

Most of us here believe that IBS is almost always (if not always) undiagnosed celiac/gluten intolerance anyway. If you check the symptoms list, it's IDENTICAL to the symptoms of celiac. The meds your daughter was given treat the IBS symptoms by masking them, not by dealing with what is causing them in the first place.

As you have probably learned already from reading on this site, most celiacs need to cut out all dairy in the first few months of gluten-free diet, as the villi lining the intestines are unable to produce lactase (the enzyme that digests milk's lactose) since they have been damaged by the celiac.

Because celiac causes a "leaky gut," what happens is that gluten and casein proteins get into the bloodstream (where they don't belong), triggering the immune system to attack them (as it is supposed to do with foreign invaders in the bloodstream), but also triggering the immune system to attack other things, like thyroid, intestines, skin, joints, etc.

So,until the gut actually heals, lactose (the sugar in milk) AND casein (the protein in milk) need to be avoided. Lactose isn't such a big deal, as you can find lacotse-free milk--but you can't find casein-free milk, and that casein will KEEP the gut from healing, even if the original damage was done by the gluten, not the casein.

Health food store ladies can be very nice, and some even know an enormous amount. However, it sounds to me like the one you saw is giving dangerous advice in order to sell her products.

If your daughter has any thyroid issues (sounds like she might), that needs to be addressed by a doctor and blood tests (TSH, T3, and T4).

Many of us here have or had thyroid problems, and they seem to be directly related to celiac.

Now, there ARE other issues that can cause the symptoms that your daughter is experiencing. But I think you need a doctor who KNOWS what celiac is so that you can either diagnose celiac or rule it out. And yours doesn't know what it is or how to diagnose it, so I really think you need a different doctor.

You might want to post a separate thread asking for recommendations for a celiac-savvy doctor in your area.

Fiddle Faddle

Hi, thank you. I made her an appointment with a new gastro doctor in Tulsa. I know one of the doctors in the clinic is familiar with celiac, but she will be seeing the one that takes paitents under 18. Hopefully this will work out. Her appt. is Dec. 17th. I will post an update then.

Claudia

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I just wanted to add that if your dr had been familier with celiac, he wouldn't have mentioned a colonoscopy as an endoscopy of the small intestine is the test for it.

I'm glad you've found a better dr and you are so on top of her care.

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Update: The new gastro doctor ordered a blood test for celiac even though she has been gluten free since Oct. He also suspects gastroparesis and she is going for a test tomorrow to see if she has that. We should get the celiac panel back in 3-4 days he said. I asked if this test would show celiac even though she is gluten free and he said yes. We shall see. He also said she is definately lactose intolerant and she is to quit eating or drinking any dairy products. I am so glad we found him :lol: . He is very caring and listened to everything we said. He is the one that brought celiac up. He said he can't believe no one has tested her for it :( .

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Hi Claudia,

Your new gastro is not impressing me. For the Celiac tests to be accurate she would have to be ingesting gluten. The only exception to this rule is the genetic testing.

From our experience, she is having possible symptoms of Eosinphilic Esophagitis. It would take an endoscopy with biopsy to diagnose. (It is considered rare, healthy looking tissue needs to be biopsied - it often gets missed because they don't bother taking samples from tissue that appears healthy and therefore is considered difficult to get a diagnoses, and is more common in males)

My six year-old daughter was just diagnosed with EE today.

Laura

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He did say that she probably has esophagitis based on the endoscopy the other doctor did. He is going by all of her records from the other doctors that she has seen. We just went in to get a second opinion on the GERD and IBS. He said he might do another endo after these other tests, but we are going to wait until the results come back to procede further. He is the 1st doctor to take what we say seriously. Her regular doctor was stumped and requested the second opinon because he felt the first gastro doctor was missing something.

I also told my daughter not to be surprised if the test comes back negative. We still believe she has celiac with or without a positive on the test. She will continue a gluten free diet regardless. She is feeling a lot better on it. Now if I could just get her to leave cheese alone, she would probably get better faster. But he also told her that, so hopefully she will listen now.

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