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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

10 posts in this topic

So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer :D I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(: 

 

Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit?

My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better? 

WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any? 

 

And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end?

Support is desperately needed here. Thanks everyone!

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So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer :D I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(: 

 

Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit?

My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better? 

WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any? 

 

And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end?

Support is desperately needed here. Thanks everyone!

 

Hi Anna.

 

I don't know about additional measure you can take, however, this issue has been discussed and you should be able to search the site for the discussions. 

 

Good Luck

 

Colleen

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A probiotic called Bio-K is what my doctor ordered after big events like surgery, etc. It has to be refrigerated, is gluten-free, and there are soy, and rice-based versions. Then follow up with standard probiotics in a capsule.

I would recommend (and I am not a doctor) just eating protein, veggies (avoiding those grown underground like carrots, potatoes) no grains or fruit for a week or so and then slowly start adding foods back into your diet. Avoid those that naturally produce gas like legumes for a while.

I wish you well.

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It sounds like your Doc gave you the right combo of meds for it. It's good that you want to make the most of them by eating the right foods too. The Specific Carbohydrate Diet (SCD) is designed to limit sugars and carbs so the bacteria have less to feed on, and also to reduce inflammation. Here are a couple links about the diet and the suggested foods list.

 

http://scdlifestyle.com/about-the-scd-diet/

http://www.breakingtheviciouscycle.info/legal/listing/C/
 

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I've read into both SCD and FODMAPs and then found a list of foods legal and illegal on BOTH diets combined to fight sibo. And it's printed out on 10 pages in such a neat order!

I'm about to follow that shit like a bible.

I am so ready for this to be over with so I finally feel myself again!!!

 

Cylinglady, did you or do you now have SIBO? I've been reading so much contradictory information about probiotcs :/ Whether I should take them while on the antibiotic, or once I get off the antibiotic, or not at all? So confusing. Do you have any input on this?

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In the old days (20 years ago) my doctor pushed probiotics long before they became popular and had a lot of studies done. I would have waited until my course of antibiotics was done or nearly done, but now, if I had a really big issue, like you, I would start them concurrently with the antibiotic. Use different strains and eat foods, if possible, that are fermented, etc. Prebiotics are important too.

I do not know if I was diagnosed with SIBO. At one time, over 20 years ago, I got intestinal issues traveling and was prescribed antibiotics. If I recall, stool samples showed a lot of bad bacteria and some parasites. I used probiotics back then and after every surgery.

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AnnaChristine18 - how is treating your SIBO going? There are a few things I've come across that are supposed to be beneficial for SIBO, beyond diet modifications. One is making sure you have adequate stomach acid levels, which ensures that food is properly broken down rather than fermenting and feeding bad bacteria. Stomach acid also helps kill bad bacteria and parasites, apparently.

The other is, have you ever had your thyroid tested? Thyroid issues are apparently common with celiac, and they're also associated with SIBO. If things are moving through your system slowly due to hypothyroidism, it is more likely they will ferment and provide food for bad bacteria. Having proper thyroid levels could help prevent SIBO from returning.

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I have SIBO, also.  I've been on two rounds of rifamaxin, and I'm sure I'm about to go on a third round.  The g.i. that I see told me not to take probiotics while on the rifamaxin.  He also prescribed the FodMap diet.  He gave me book called The Fodmap Diet by Dr. Chey, and sent me to a dietician to get started on the diet.  It's important to follow the diet carefully.  The bummer about SIBO is that once you have it, you are prone to get it over and over.  Several sources on the internet reported that it never truly goes away.  I haven't personally been told that.  I can tell you that I felt great immediately after starting the drug regimen.  I continued to feel great for a few weeks, and then I slowly started returning to the typical problems.  That's when I started taking the second round of meds.  Again, I was feeling great for about five weeks.  At the follow up with the dietician, we started planning the challenge phase of slowly trying out higher fodmap foods.  This week has been awful!  All the symptoms are back.  I called the dr. today, and he ordered another hydrogen breath test to be administered before he orders a third round of meds.  It's not a fun thing to have!  I hope it turns around for you soon.

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In the old days (20 years ago) my doctor pushed probiotics long before they became popular and had a lot of studies done. I would have waited until my course of antibiotics was done or nearly done, but now, if I had a really big issue, like you, I would start them concurrently with the antibiotic. Use different strains and eat foods, if possible, that are fermented, etc. Prebiotics are important too.

I do not know if I was diagnosed with SIBO. At one time, over 20 years ago, I got intestinal issues traveling and was prescribed antibiotics. If I recall, stool samples showed a lot of bad bacteria and some parasites. I used probiotics back then and after every surgery.

Antibiotics for SIBO are not to be taken at the same time as probiotics.  In fact, before I finished the meds the nurse called to remind me not to take them until I finished the last dosage.

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  I had SIBO off an on for over a year.  I've also taken antibiotics.  The evidence is that antibiotics are not as effective, long-term, as changes in diet.    Flagyl even made things worse.  What happens with SIBO is there's an imbalance of bacteria, but antibiotics basically indiscriminately eliminate all bacteria, even the ones that help, and can lead to complications like C. dificilis, which is potentially very dangerous.

 

  Align is a decent probiotic and its one of the few that really works for me.  If you have methane, that's more likely to be assosciated with constipation.  I also have gotten a lot out of eating real sauerkraut, kimchi, and kefir (it's a milk culture).

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    • Daughter with celiac- need test result help
      Thanks so much for your reply and the encouragement! She has not had the dgp test. I will ask her doctor at the next appointment in two weeks. Her doctor is out of the country now for a family emergency so I can't talk to her before her appointment. Her thyroid is good. The whole thing has been tough - logistically dealing with the dietary change and how extremely careful we have to be. Emotionally - worrying about her health and her feelings about all of this. I'm happy her number came down so much. There's hope. I'm just praying there's not more wrong and trying to prevent any possible risk of cross contamination. It seems she's very sensitive. It's also tough she's a kid at school with gluten on every surface. 
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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
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