Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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! 

Share this post


Link to post
Share on other sites

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 :)

Share this post


Link to post
Share on other sites

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!!!

Share this post


Link to post
Share on other sites

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? 

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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)

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   14 Members, 1 Anonymous, 938 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics