Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


AnnaChristine18

Recommended Posts

FruitEnthusiast Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 88
  • Created
  • Last Reply
surviormom Rookie

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.

surviormom Rookie

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

  • 2 weeks later...
AnnaChristine18 Newbie

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! 

FruitEnthusiast Enthusiast

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 :)

AnnaChristine18 Newbie

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!!!

Nikki2777 Community Regular

Please come back and update.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AnnaChristine18 Newbie

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? 

HavaneseMom Explorer

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!

FruitEnthusiast Enthusiast

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!

mbr22m Rookie

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.

Open Original Shared Link

  • 10 months later...
FallenLegacy Newbie

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)

ravenwoodglass Mentor

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. 

StClair Apprentice

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,540
    • Most Online (within 30 mins)
      7,748

    Nina J
    Newest Member
    Nina J
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
    • Scatterbrain
      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.