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It Was Supposed To Be Over At Gluten Free! Help :(

ibs celiac refractory celiac bloating constipation pain help me not healing

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85 replies to this topic

#76 FruitEnthusiast

 
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Posted 26 May 2014 - 11:22 AM

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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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


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#77 surviormom

 
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Posted 27 May 2014 - 07:31 AM

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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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#78 surviormom

 
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Posted 27 May 2014 - 07:42 AM

And if it helps at all, I have found that one slip up going out to dinner and I am doomed for a month. 


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#79 AnnaChristine18

 
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Posted 09 June 2014 - 05:44 PM

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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#80 FruitEnthusiast

 
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Posted 09 June 2014 - 06:04 PM

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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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#81 AnnaChristine18

 
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Posted 10 June 2014 - 07:54 AM

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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#82 Nikki2777

 
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Posted 13 June 2014 - 07:14 AM

Please come back and update.


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#83 AnnaChristine18

 
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Posted 13 June 2014 - 07:31 AM

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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#84 HavaneseMom

 
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Posted 13 June 2014 - 02:20 PM

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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Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#85 FruitEnthusiast

 
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Posted 13 June 2014 - 06:14 PM

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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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#86 mbr22m

 
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Posted 18 June 2014 - 08:07 AM

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.thepaleom...ntolerance.html
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