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

SIBO


brewers5465

Recommended Posts

brewers5465 Newbie

Im a 24 year old male who has always care about my health even from a young age. I grew up always loving being strong and enjoying what I thought was good health. So I lived in a oblivious dream world until a couple of months ago when my adolescent fueled sense of invincibility was shattered when I discovered I have ADD. It made perfect sense seeming to explain all my shortcomings in life and made me look at myself much more objectively. I wasnt this awesome person with nothing wrong with me, I am a flawed human with defects deserving of attention. I began to think about how I have always had digestive issues and that maybe there was something else going on with me and I shouldnt ignore it anymore.

So after a little research online I concluded that it was probably an intolerance to gluten and with the help of websites like this one I embarked on a gluten-free diet. About two weeks after starting the diet I began to feel worse and chocked it up to detoxing but after another week of feeling the same I cut lactose out too. I do feel healthier in some ways but my stomach problems still persist along with a sense that I feel poisoned. While surfing for the cause I stumbled across a little discussed syndrome called SIBO and it seemed to fit my situation very well.

SIBO is a condition that is caused by to much bacteria in the upper intestine causing food to not be digested properly and can appear in many ways to emulate Celiac, IBS, Crones and other digestive conditions. Treatment is a round of antibiotics that temporarily alleviate symptoms but will undoubtedly return unless a change is diet implemented. The change in diet is scary to think of and its very similar to gluten free but much worse.

Gluten must be eliminated along with all legumes and foods that are high in sugar/fructose. Also simple things like chewing gum can make it worse due to ingredients like sorbitol and xylitol. Fewer meals eaten throughout the day are encouraged to help your stomach clear out the contents and push bacteria further down. Drinking lots of water and getting exercise are also important to aid digestion. Here is a partial list of foods to stay away from

Gluten- All wheat but also most grains due to starch

Legumes- All beans and peanuts are legumes

Foods high in Fructans- Onions, artichokes, pasta, bread and pastries

Lactose- Casin could be a culprit also so eliminate until you can give it a test period

Raw veggies- salads, high starchy veggies (these are all hard to digest)

Mushrooms- All types promote bacteria growth

Foods high in Fructose- Fruit, honey, dehydrated fruit and anything sweetened with fructose

Artificial sweeteners- Sorbitol, Xylitol, mannitol, isomalt, erithrytol, arabitol, erythritol, glycol, glycerol, lactitol, ribitol

This leaves very little that I can eat and leaves me with a constant hunger. Mainly all Im allowed is cooked veggies, meat, nuts and 1 or 2 bananas a day. I am very open to new diet tips and suggestion or comments about SIBO since I could find very little info on it. Some of the food I listed is allowed in occasional moderation but Im steering clear of most regardless as I cant afford antibiotics and I want a permanent solution. Is there anyone out there who has conquered their SIBO?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kayo Explorer

I conquered SIBO. I had the test and did the round of antibiotics and stuck to the low FODMAP diet which is basically avoiding the foods in the list you have above. It took a couple of months to fully heal. I'm ok now and have been able to add some foods back into my diet. I do eat gluten-free grains, beans, mushrooms and lactose-free cheese and yogurt in small amounts. I use sorbitol free toothpaste and gum. For sweetner I use regular table sugar or maple syrup. I still avoid all high fructose foods, most fruits and avoid onions, asparagus, artichokes and garlic. I know when I've eaten too many tomatoes for example because I get some symptoms (acid reflux, stomach cramps). I did indulge a bit over the holidays and I'm still fine. It's all about moderation and balance which you can achieve through trial and error and keeping a detailed food diary. Once the SIBO is clear and gone you'll feel so much better. The constant hunger goes away. (I was so worried it wouldn't) I have actually forgotten to eat on occasion. That never would have happened before. The bacteria wants to be fed constantly. The diet won't make a lick of difference until you get some antibiotics in you. I started the FODMAP diet in June and went through the testing and then antibiotics in August. I didn't really start to feel better and like my old self until Oct/Nov. I have not been able to pinpoint when I developed SIBO but believe I had it for years, possibly as many as 3 or 4. The signs are (now I know looking back): constant hunger, grumbly stomach, all over body inflammation, joint pain, inexplicable weight gain and food intolerence type reactions to all foods.

Get tested soon so you can get the meds. You may also want to be tested for fructose malabsorption as this too can mimic SIBO, celiac, Crohn's, etc.

Good luck!

Link to comment
Share on other sites
brewers5465 Newbie

Thank you so much! Im glad to know there are people out there who know about this and for the tip about the toothpaste which never crossed my mind. I am not to thrilled about how long the recovery takes or about needing antibiotics though :\

I dont have any insurance so I have to pay for everything out of pocket so with the doc visit, test and the meds im looking at over $400. So short of buying the meds without a doc visit my recovery could be postponed for a few months. But im not gonna give up that easily (ill ship from mexico if I have to lol) and Im going to continue with this diet in the mean time with recovery being my sole motivator. But if anyone has anymore food or recipe tips I would greatly appreciate the added dimension to my very bleak diet structure.

Link to comment
Share on other sites
eatmeat4good Enthusiast

I'm very interested in this. What is the test? Is that what you ask for at the Dr.'s? A SIBO test? I am going to look into that. Thank you very much for your post. Sorry I can't be of help, but you have been a help to me. :)

Link to comment
Share on other sites
brewers5465 Newbie

No problem, I posted this not only to help myself but to make other people aware that they might have it also. The test is called a hydrogen breath test, the same one used to check for lactose intolerance

Link to comment
Share on other sites
kayo Explorer

I didn't know anything about SIBO until the doc mentioned it. I never would have known that's what my core issue was on my own even though I had been trying to get to the root of my GI issues for 5+ years.

The test is hydrogen breath test like you said. You drink something and then they take breath samples every 20 mins or so. I spent most of the time going back and forth to the bathroom which I guess is a good indicator that I was positive. If you can get the meds from Mexico or Canada then go for it. I didn't notice any improvement on the diet alone. Then again I believe I had SIBO for years. I'm sure I had a lot of bacteria to conquer. I was eating a bland diet of bananas, rice and chicken and still reacting. That's how nasty the SIBO can be.

I don't find the diet too restrictive at all. I keep a spread sheet that helps me manage what I can eat. I've never been a huge fruit eater so that is not a big deal for me. I can have citrus, bananas, avocados, berries and cooked apples. All in small amts of course. I've never been a fan of brown rice so that's easy to avoid. I do notice almonds bother me but other nuts have not been an issue. I'm already gluten, lactose and soy free so no biggie there.

One other thing I want to mention is that my scope showed colitis. Doc thinks this may be due to the SIBO and it should clear up. I guess that is one of the dangers of untreated SIBO. I also had a lot of inflammation, head to toe, that docs chalked up to my RA. Once I healed that all went away.

I've found a lot of help about the FODMAP diet by following the FM (fructose malabsorption) groups on Yahoo. One out of Aussie and one USA. We share the same diet but for different reasons so there will be some vaiation. Sue Shepherd and Monash University seem to be the diet experts. Google them for more info.

Open Original Shared Link

Open Original Shared Link

HFCS and sorbitol and xylitol can be hard to avoid but here are some products (all gluten-free too):

This is the toothpaste I use. It's pricey but I find it lasts a long time since it's just me using it: Open Original Shared Link

This is my fave gum: Open Original Shared Link

Soda made with cane sugar: Open Original Shared Link

Lip balm: Open Original Shared Link

Hope this helps!

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    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

    • 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.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...