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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

It Was Supposed To Be Over At Gluten Free! Help :(
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AnnaChristine, you started this post nearly a month ago, and you keep coming back saying you are feeling worse and worse. There are a lot of people concerned about you giving you good advice. I hope you will try some of the suggestions to see if it helps you.

 

Everyone on here has had to try different things to find the answer. It's a trial and error process. I'd really like to see you improve and start feeling better. I think that's going to mean trying something you haven't tried yet.

 

Whatever you do try, two weeks isn't long enough to see if it's helping you. It can take months to see a difference, or longer depending. For example, people who take L-Glutamine take it continuously until they are well however long that takes.

 

It would be really helpful to you, and reduce stress, if you would try not to have any expectations about how long this process will take. There is absolutely no way of predicting the time it will take you to get well. Stress will keep you from getting well as much as anything. I've been working on my own recovery for two years now. You are a lot younger than me so there is no reason that it has to take that long for you.

 

Try to relax and make peace with this process though. When you get it figured out you will have your whole life ahead of you to look forward to, knowing what you need to do to stay well. It won't always be this hard.

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surviormom    5

AnnaChristine, you started this post nearly a month ago, and you keep coming back saying you are feeling worse and worse. There are a lot of people concerned about you giving you good advice. I hope you will try some of the suggestions to see if it helps you.

 

Everyone on here has had to try different things to find the answer. It's a trial and error process. I'd really like to see you improve and start feeling better. I think that's going to mean trying something you haven't tried yet.

 

Whatever you do try, two weeks isn't long enough to see if it's helping you. It can take months to see a difference, or longer depending. For example, people who take L-Glutamine take it continuously until they are well however long that takes.

 

It would be really helpful to you, and reduce stress, if you would try not to have any expectations about how long this process will take. There is absolutely no way of predicting the time it will take you to get well. Stress will keep you from getting well as much as anything. I've been working on my own recovery for two years now. You are a lot younger than me so there is no reason that it has to take that long for you.

 

Try to relax and make peace with this process though. When you get it figured out you will have your whole life ahead of you to look forward to, knowing what you need to do to stay well. It won't always be this hard.

That is a good one for me to remember.  :)  I always want immediate results and that just does not happen.

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So I finally found my answer!! The doctor I'm seeing at the Celiac Center tested me for SIBO today despite the fact that I already tried taking the antibiotic for a week a few months ago (the dose was too small she said). It tested positive immediately for large amounts of methane. I'm so happy it doesn't seem real! 

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Thanks so much for sharing this AnnaChristine, it's great news to hear!!

 

I've heard from people that they have taken two kinds of antibiotics together at the same time to treat SIBO. I would have to look up the names to remember them. What did your your doc give you? I know there are others on here who have been treated for that and they could share more info with you. I haven't actually had SIBO myself so I can't speak from experience.

 

Also thanks for posting your pic, it's fun to see what people look like! I think I'm going to post my pic too :)

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Thanks so much for sharing this AnnaChristine, it's great news to hear!!

 

I've heard from people that they have taken two kinds of antibiotics together at the same time to treat SIBO. I would have to look up the names to remember them. What did your your doc give you? I know there are others on here who have been treated for that and they could share more info with you. I haven't actually had SIBO myself so I can't speak from experience.

 

Also thanks for posting your pic, it's fun to see what people look like! I think I'm going to post my pic too :)

My doctor gave me Neomycin and Rifaximin to take for 10 days each (20 days in total with 2 pills a day)

I'm so happy there's finally going to be an end to this!!!

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I started a thread about my SIBO but didn't get nearly as popular as this one lol. I have so may questions and concerns about it. Originally I thought once I was diagnosed with it I'd get better on the antibiotics they gave me. I'm on my 5th day of the 20 day regimen and don't feel any better. if anything, I feel worse. On top of my usual gas and bloating symptoms I feel very nauseous all the time. I'm confused about probiotics and whether they help or harm someone with SIBO. I'm confused about diet. I thought I should start a combination of the SCD and FODMAP diet as soon as I started the antibiotic but now I'm reading stuff about how I should start it as soon as I'm finished, that continuing to eat sugars and starches while taking the antibiotic is like bate, making the bacteria come out for the antibiotic to "catch."

 

More importantly, I'm reading many many posts about SIBO coming back and quickly. Especially the methane dominant bacteria, which is what I have. They say that since they don't know what CAUSED the SIBO it keeps coming back.

I have one question for everyone even if you aren't too familiar with SIBO. Did Celiac Disease cause my SIBO? Or is there yet another thing I have to figure out about what's wrong with my body? Because on December 6th 2013 I felt normal. Then December 7th I woke up in pain and have felt this way ever since. 2 weeks later I was diagnosed with Celiac, and then 6 months later I haven't healed and was diagnosed with SIBO.

It seems like the Celiac would have caused me to have SIBO. Or is this like "the chicken or the egg?" kind of thing? 

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HavaneseMom    5

Hi AnnaChristine18,

I'm glad you were able to find out you have SIBO and that treating it may be the answer to your ongoing problems.

I don't know the answers to you questions, but I just wanted to mention to you that anti-biotics can cause a lot of digestive distress while you are taking them. They make me feel like death warmed over during treatment and my digestive system is off for a good month after taking them. I really dread taking anti-biotics, but they do typically do their job. I just didn't want you to get too discouraged with how you are feeling during your treatment since you still have 15 days to go. Keep in touch with the doctor at the Celiac Center if they start to make you feel too sick. Good Luck!

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You might try posting a new topic that says specifically what you want to know about SIBO.Like taking probiotics while taking antibiotics - or how long it takes for it to go away. Maybe post it in this same category as your original thread (recovery and treatments). Some categories get more attention than others.

 

I don't think I would agree with the keep eating sugar to bait the bad bacteria theory. I think it's better to eliminate sugars from the start.

 

I have also read that some people require more than one round of antibiotics to get rid of SIBO. Try not to be discouraged about the time it takes, focus on the fact that you know what's wrong and what to do about it. That's a huge step forward from where you were before. This whole recovery process is sometimes two steps forward, one step back, but you're on the right path!

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mbr22m    4

I tried the SCD diet and it didn't really work for me. I have the same exact symptoms you have. The bloating is the worst. I only started feeling better after trying the paleo fodmap diet, like Havanese suggested. And believe me, my house is scrubbed of gluten from shampoo, to makeup, lotions, and all food so no cc. You would eliminate high fodmap foods completely for about a month, then introduce one new food from each category every 4 days to see your reaction.

http://www.thepaleomom.com/2012/08/modifying-paleo-for-fodmap-intolerance.html

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I advise eliminating all grains as they all copy each other, gluten free grain or not (because they all have gluten, just not named by the traditional gluten free diet suchas barley, rye, wheat, oats and spelt)

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ravenwoodglass    1,211

I advise eliminating all grains as they all copy each other, gluten free grain or not (because they all have gluten, just not named by the traditional gluten free diet suchas barley, rye, wheat, oats and spelt)

You are replying to a thread that is almost a year old. 

If you needed to eliminate all grains to feel better that is fine. However most celiacs can tolerate non-gluten grains just fine. Rice, quinoa, corn etc are fine for most of us to eat. Would hate to see newbies thinking they need to restrict their diet even further than it is already restricted. 

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StClair    3

Oops, just saw this is an old thread. Hope the OP is doing OK now.

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