Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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. 

Link to comment
Share on other sites
  • 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! 

Link to comment
Share on other sites
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 :)

Link to comment
Share on other sites
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!!!

Link to comment
Share on other sites
Nikki2777 Community Regular

Please come back and update.

Link to comment
Share on other sites

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? 

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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

Link to comment
Share on other sites
  • 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)

Link to comment
Share on other sites
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. 

Link to comment
Share on other sites
StClair Apprentice

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

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,071
    • Most Online (within 30 mins)
      7,748

    Jannette
    Newest Member
    Jannette
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...