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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.

Urgent -- I Need Your Help
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60 posts in this topic

I just found out that my daughter, Ashley, has been diagnosed with latent TB. She had to have a TB test at school, and the nurse told her that the reaction was the worst she had seen. They did a number of panels of bloodwork, and her "numbers" -- I don't know WHAT numbers -- were extremely high. A chest X-ray showed that it was normal, and they said that she doesn't have ACTIVE TB.

The doctor at school said that she thinks Ashley contracted it when she was volunteering for Big Brothers / Big Sisters. She said that those kids are frequently exposed to TB, but do not have regular immunizations or testing, so it's difficult to know.

At this point, they are putting Ash on medication -- I believe she said INH (???) for 9 months. She will have to have a chest x-ray once per month during that time to make sure that it has not become active. She said that the doctor indicated that increased stress levels, illness, and I can't remember the others can induce the TB to become active.

My books are all in boxes and piled 5-high. If anyone knows ANYTHING about this, I would appreciate any information you can give me.

Also, if you are the praying type, I would appreciate those, too.

Thank you,

Lynne

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Sorry, don't have any info, but I can pray!

Will the meds make it go away, or will the chance always be there that it becomes active? I'd definately have her take it easy over the next few months!!

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Gosh Lynne, I don't know anything about this--but I will keep Ashley in my prayers :)

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From what she said, the meds will make it stay latent for now, since her tests were so high . . . She will always have latent TB, and will have to have chest x-rays each year for life . . . . I THINK that's what she said . . . I got so upset, that quite frankly I don't know if I have everything correctly.

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Oh, Lynne, I'm so sorry and I will keep her in my prayers. Here's info I copied from the CDC's website:

Questions and Answers About TB

2005

Return to Questions and Answers Main Menu

Latent TB Infection

* How can I get tested for TB?

* What if I have a positive test for TB?

* What if I have been vaccinated with BCG?

* If I have latent TB infection, how can I keep from developing TB disease?

* What if I have HIV infection?

How can I get tested for TB?

You should get tested for TB if

* You have spent time with a person known to have active TB disease or suspected to have active TB disease; or

* You have HIV infection or another condition that puts you at high risk for active TB disease; or

* You think you might have active TB disease; or

* You are from a country where active TB disease is very common (most countries in Latin America and the Caribbean, Africa, Asia, Eastern Europe, and Russia); or

* You live somewhere in the United States that active TB disease is more common such as a homeless shelter, migrant farm camp, prison or jail, and some nursing homes); or

* You inject illegal drugs.

The TB skin test

The TB skin test may be used to find out if you have TB infection. You can get a skin test at the health department or at your doctor's office. A health care worker will inject a small amount of testing fluid (called tuberculin or PPD) just under the skin on the under side of the forearm. After 2 or 3 days, you must return to have your skin test read by the health care worker. You may have a swelling where the tuberculin was injected. The health care worker will measure this swelling and tell you if your reaction to the test is positive or negative. A positive reaction usually means that you have been infected by someone with active TB disease.

If you have recently spent time with and been exposed to someone with active TB disease, your TB skin test reaction may not be positive yet. You may need a second skin test 8 to 10 weeks after the last time you spent time with the person. This is because it can take several weeks after infection for your immune system to react to the TB skin test. If your reaction to the second test is negative, you probably do not have latent TB infection.

QuantiFERON®-TB Gold

QuantiFERON®-TB Gold (QFT) is a blood test used to find out if you are infected with TB bacteria. The QFT measures the response to TB proteins when they are mixed with a small amount of blood. Currently, few health departments offer the QFT. If your health department does offer the QFT, only one visit is required, at which time your blood is drawn for the test.

Back to Top of Page

What if I have a positive test for TB?

If you have a positive reaction to the TB skin test or the QFT, your doctor or nurse may do other tests to see if you have active TB disease. These tests usually include a chest x-ray and a test of the phlegm you cough up. Because the TB bacteria may be found somewhere other than your lungs, your doctor or nurse may check your blood or urine, or do other tests. If you have active TB disease, you will need to take medicine to cure the disease.

What if I have been vaccinated with BCG?

BCG is a vaccine for TB. This vaccine is not widely used in the United States, but it is often given to infants and small children in other countries where TB is common. BCG vaccine does not always protect people from getting TB.

If you were vaccinated with BCG, you may have a positive reaction to a TB skin test. This reaction may be due to the BCG vaccine itself or due to infection with the TB bacteria. Your positive reaction probably means you have been infected with TB bacteria if

* You recently spent time with a person who has active TB disease; or

* You are from an area of the world where active TB disease is very common (such as most countries in Latin America and the Caribbean, Africa, Asia, Eastern Europe, and Russia); or

* You spend time where TB disease is common (homeless shelters, migrant farm camps, drug-treatment centers, health care clinics, jails, prisons).

Back to Top of Page

If I have latent TB infection, how can I keep from developing active TB disease?

Many people who have latent TB infection never develop active TB disease. But some people who have latent TB infection are more likely to develop active TB disease than others. These people are at high risk for active TB disease. They include

* people with HIV infection

* people who became infected with TB bacteria in the last 2 years

* babies and young children

* people who inject illegal drugs

* people who are sick with other diseases that weaken the immune system

* elderly people

* people who were not treated correctly for TB in the past

If you have latent TB infection (a positive TB skin test reaction or positive QFT) and you are in one of these high-risk groups, you need to take medicine to keep from developing active TB disease. This is called treatment for latent TB infection. There are several treatment options. You and your health care provider must decide which treatment is best for you.

The medicine usually taken for the treatment of latent TB infection is called isoniazid (INH). INH kills the TB bacteria that are in the body. If you take your medicine as instructed by your doctor or nurse, it can keep you from developing active TB disease. Children and people with HIV infection may need to take INH for a longer time.

Because there are less bacteria in a person with latent TB infection, treatment is much easier. Usually, only one drug is needed to treat latent TB infection. A person with active TB disease has a large amount of TB bacteria in the body. Several drugs are needed to treat active TB disease.

Sometimes people are given treatment for latent TB infection even if their skin test reaction is not positive. This is often done with infants, children, and HIV-infected people who have recently spent time with someone with active TB disease. This is because they are at very high risk of developing active TB disease soon after they become infected with TB bacteria.

It is important that you take all the pills as prescribed. If you start taking INH, you will need to see your doctor or nurse on a regular schedule. He or she will check on how you are doing. Some people have serious side effects from INH. If you have any of the following side effects, call your doctor or nurse right away:

* no appetite

* nausea

* vomiting

* yellowish skin or eyes

* fever for 3 or more days

* abdominal pain

* tingling in the fingers and toes

Warning: Drinking alcoholic beverages (wine, beer, and liquor) while taking INH can be dangerous. Check with your doctor or nurse for more information.

People who have latent TB infection need to know the symptoms of active TB disease. If they develop symptoms of active TB disease, they should see a doctor right away.

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I'm sorry I don't know anything about TB either,but I'm thinking of you and sending big

{{{{{{{hugs}}}}}}}}

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From what she said, the meds will make it stay latent for now, since her tests were so high . . . She will always have latent TB, and will have to have chest x-rays each year for life . . . . I THINK that's what she said . . . I got so upset, that quite frankly I don't know if I have everything correctly.

Well luckily I come from a high TB area (and curiously am immune naturally??) but firstly the drugs for latent TB are nowhere near as bad as active TB so I can partially return a favour.

According to the WHO TB is considered cured after 6 months of treatment with special antibiotics BUT there are side effects.

The most important is to take B6 suppliment and LOTS of it.

Avoid all alcohol and watch for aneamia and peripheral neuropathy. (sorry...)

http://www.rxlist.com/cgi/generic2/isoniaz.htm

No point me quoting from here....

Make sure you get the liver function tests.... obviously. AGE is important...

I'll try and look into natural immunity.... I know this is along shot but if I need to get a biometric passport ....

.. I'd be happy to do whatever I could but it seems to be a genetic immunity from what I can scratch up quickly.

http://thorax.bmjjournals.com/cgi/content/full/59/11/980

Bear in mind I was also immunised ... since they didn't know what else to do....

Cripes I never considered... perhaps my leukocytes can actually help someone?

edits:

http://www.newsrx.com/newsletters/TB-and-O...08163333TW.html

Vitamin D crucial in recovery....

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I am so sorry Lynne about Ashley. I don't know anything about TB. My father had it when I was a child and was treated for it. About 6 years ago, I had several doctor's tell me that it has been on the rise for some time. But, now it is treatable as long as they stay on top of things. The problem is that there are many carriers out there that show no symptoms. And how many people get a yearly TB test? Of course, I will say prayers. Sending Hugs to wrap you in.

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I am so sorry but so glad for her that they found it before it became active. I don't know much about TB other than that it is on the rise but I will add her to my prayers.

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Angie -- thank you so much for looking that up. I'm not in much of a state to think clearly -- I simply freaked out when I found out about it. Ashley has Asthma that is SO difficult to control . . . at age 20 she still has to take her peak flows twice a day, and is on a myriad of asthma preventative meds. I think that is why they want her on the INH for so long . . . . .

I am a little more comforted that the CDC said that most latent TB doesn't become active. They just did another blood panel today -- forgot to even mention that -- if it shows that the TB is active, then all of us will need to be tested for TB, she will have to wear a mask for a week, I think, and we'll have to be treated if our levels are high . . . . I don't know when she'll get that info . . .

Thank you so much for looking that up.

gfp -- Thank you for the information -- I think it's really important . . . I'll call Freeda and order the B6 to make SURE that she takes it. I already have peripheral neuropathy that is BAD -- I don't want her developing that. She is already anemic -- I'll need to get iron supplements, as well. She knows about the alcohol, but she isn't much of a drinker, thank goodness.

Carla, Patti, Metta everyone . . . thanks for the prayers . . . . I appreciate that very much.

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I don't have anything to offer as far as info etc.

I'll keep your family in my prayers.

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Angie -- thank you so much for looking that up. I'm not in much of a state to think clearly -- I simply freaked out when I found out about it. Ashley has Asthma that is SO difficult to control . . . at age 20 she still has to take her peak flows twice a day, and is on a myriad of asthma preventative meds. I think that is why they want her on the INH for so long . . . . .

I am a little more comforted that the CDC said that most latent TB doesn't become active. They just did another blood panel today -- forgot to even mention that -- if it shows that the TB is active, then all of us will need to be tested for TB, she will have to wear a mask for a week, I think, and we'll have to be treated if our levels are high . . . . I don't know when she'll get that info . . .

Thank you so much for looking that up.

gfp -- Thank you for the information -- I think it's really important . . . I'll call Freeda and order the B6 to make SURE that she takes it. I already have peripheral neuropathy that is BAD -- I don't want her developing that. She is already anemic -- I'll need to get iron supplements, as well. She knows about the alcohol, but she isn't much of a drinker, thank goodness.

Carla, Patti, Metta everyone . . . thanks for the prayers . . . . I appreciate that very much.

And Vit D...

I'm completely serious if my antibodies can help..... CarlaB will curse you of course since she will have to live up to her promise and fiddle-faddle would get called in for some good ole chicken soup....

Its so weird, I never considered my natural immunity much .. apparently its genetic .. I guess I know I have weird genes...

I am a little more comforted that the CDC said that most latent TB doesn't become active. They just did another blood panel today -- forgot to even mention that -- if it shows that the TB is active, then all of us will need to be tested for TB, she will have to wear a mask for a week, I think, and we'll have to be treated if our levels are high . . . . I don't know when she'll get that info . . .

Its very unlikely to be transmitted without accompanying lung symptoms.... its practically impossible except through direct blood transfer. Put this to the back of your mind...

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Thanks, gfp . . . .I already called Ash and told her what you said. The doctor at the clinic has already prescribed B6 supplements, but not the iron . . . I told her that if if wasn't a prescription B6, then I would call Freeda . . . . I haven't called yet, so I'll get the Vitamin D as well. I know she has to watch that because it's fat soluble, but will warn her of that.

I didn't even realize that you were offering to donate blood to increase her antibodies -- what an amazing offer. I can't even thank you enough for that. What a selfless act -- you are such a beautiful person. I will have her ask the doctors that are treating her. Thank you so VERY much.

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Wow Lynne, I wish I had some info for you but I don't. :unsure: I'll definatly say a prayer though.

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gfp -- just talked with my daughter again -- she was blown away by your offer. She is going to call the doctor to see if they want to do that, and if so, we'll get it in motion. We will reimburse you ANY costs that you incur during the process, should this happen. She said to thank you VERY much. Much love to you, Lynne

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CarlaB will curse you of course since she will have to live up to her promise

Promise of you teaching me to cook fancy stuff! Why would I be cursing about that ... only because I am not remodeling my kitchen till next summer ... and I do only live about a two hour drive from Lynne. :)

I just wanted to add, if she's supplementing B6 individually, she might want to take it with a B complex supplement as well. B vitamins work together and I've heard it can be hard on the nervous system to just take one all by itself.

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There you go . . . . . . :lol:

Just saw the addition . . . will tell her about the B complex in addition to B6. They're all water-soluble, so if she gets too much, she'll just pee it out!!!

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There you go . . . . . . :lol:

Just saw the addition . . . will tell her about the B complex in addition to B6. They're all water-soluble, so if she gets too much, she'll just pee it out!!!

True, but you wouldn't want to be getting enough of one and not enough of the others I guess. A nutritionist told me this a while back.

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That's really good advice . . . thanks, Carla. Also, thanks for making me smile a little . . . it's a little refreshing given that I've been bawling since she called . . . . .

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Oh, don't cry ... then I'll have to start in with stupid jokes! :lol:

I don't know about you, but I'd love to hear Steve try and pronounce Louisville correctly with his English accent!! :lol:

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I LOVE English accents . . . . but I don't think he could say Luh(a)vull in that beautiful accent! :lol::lol:

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No way, heck, he'd have trouble enough recognizing that they are speaking English there!!!

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Lynne-

I used to work in battered women shelters and for a county in California in the department of child services. Needles to say I tested positive to TB. I remember having a chest x-ray and having to take medication for 6 months. It must have not been active. At the time it did not seem to be a big deal. I don't remember the medication or it having any side effects. To be honest I forgot all about it until I read your thread then my thought was "oh, yea, I had that". I will pray that all will work out best for your daughters health.

Hez

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My son, adopted from Russia, came to us with latent TB. He was on the INH for 9 months, had no side-effects and all is well now. I did give him his vitamins regularly and tried to keep him on low sugar and probiotics while he was on the medication. It's really nothing to worry about - just sounds awful when you first hear about it.

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Oh my gosh, I hope your Ashely will be okay. It's good she found out!

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The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. 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But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
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