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Bacterial Overgrowth
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I've been a little over 5 months on the diet.....not better yet. It could be that I have lactose, casein, or some sort of dairy intolerance. However, I've been researching on possible things: could it be bacterial overgrowth? If so, antibiotics could be the answer......there are a lot of articles I found on google, and here's one from Celiac.com.....I'm posting because I might have it, but also, others on the board that still have symptoms after an extended period of time despite great adhearance to the diet might have it, as well....there's the article from Celiac.com:

Bacterial Overgrowth of Small Intestine Common in Treated Celiac Disease

Celiac.com 07/12/2004

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That is quite interesting, celiac3270, thank you for that!

I too have continued to have symptoms (permanent diarrhea, bloating, cramps, etc. etc.) even though I have been on the diet for 1 1/2 years. I go back to my gastro this Wednesday, and he has already set up an appt with the "Celiac guru" the ultimate Celiac expert and St. Michael's Hospital here in Toronto. I go to see him mid August. Hopefully, he can tell why I am not responding to the gluten-free diet...

Karen

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That's an interesting article and possible explanation for those who are still suffering symptoms despite scrupulously avoiding gluten. Fortunately my Enterolab test results told me I had autoimmune reactions/antibodies to casein AND gluten. So after avoiding gluten and just using lactaid for over 2 months I started eliminating all dairy as well as gluten. That greatly reduced my symptoms. When I tried to substitute soy for dairy products, my symptoms returned (similar, slightly reduced but different enough I knew they were from the soy). So I'm now also avoiding soy. When I successfully avoid gluten, dairy and soy, I have pain free/symptom free days. When I have little soy 'slips' I have recurrent but less intense symptoms. During the past 3 months since I learned I had celiac disease I have really learned to respect my body's signals (pain and discomfort) that I'm eating something it doesn't want. My body never lies--when I have symptoms, I can almost always track what I consumed that influenced the symptoms. I REALLY dislike having to worry about sooo many ingredients, but at least I didn't have to do it all at once. I should have <_< ... but I didn't know, so I didn't. :unsure: However, the alternative to scrupulous gluten/dairy/soy sleuthing was for me excruciating cramping pain and bloating. :o So I'm happy to avoid those 3 ingredients in order to avoid those painful symptoms. :D

BURDEE

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Dr. Cynthia Rudert, one of the top celiac doctors in the country, puts ALL of her new celaic patients on probiotics just in case of bacterial overgrowth. She doesn't even look for it (it can be hard to diagnose), she just puts her patients on probiotics. Many patients who have come to her diagnosed with refractory sprue turned out to have bacterial overgrowth.

One probiotic she mentions is Culturelle because it's gluten-free, OTC, and doesn't have to be refrigerated.

richard

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Maybe I should add a PS to my story: A year before I learned I had celiac disease I visited a naturopath who suggested probiotics and digestive enzymes to help with my 'symptoms'. Too bad my 'visit' was just a free consult at a health food store, and he didn't diagnose celiac disease then. <_< But I've taken those probiotics and enzymes daily for over 15 months. A year after I started those supplements, I began to avoid gluten, then dairy, then soy. Each restriction reduced my symptoms a little more ... Maybe my experience also supports the bacterial overgrowth theory ...

BURDEE

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Dr. Cynthia Rudert, one of the top celiac doctors in the country, puts ALL of her new celaic patients on probiotics just in case of bacterial overgrowth. She doesn't even look for it (it can be hard to diagnose), she just puts her patients on probiotics. Many patients who have come to her diagnosed with refractory sprue turned out to have bacterial overgrowth.

One probiotic she mentions is Culturelle because it's gluten-free, OTC, and doesn't have to be refrigerated.

richard

Wow...thank you for the information, Richard! :D ....I got an appointment with this new Celiac doctor for August 3rd...yay! I'll definitely mention this to him.

-celiac3270

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The following book explains how to get the bacteria in your gut back into balance.

Breaking the Vicious Cycle: Intestinal Health Through Diet

by Elaine Gloria Gottschall

I ordered it from Amazon and read it but have not yet implemented it.

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I had in mind also to recommend the book Bonnie mentions, "Breaking the Vicious Cycle by Elaine Gottschall, Some information from this book can be found on http://www.breakingthroughtheviciouscycle.info/ or just http://www.scdiet.org

I think maybe there's another slash after org, Can't decipher myown writing!. This diet is very strict, but I think the thinking behind it is good. I am starting on it now.

If you are milk intolerant, that will be another limiting factor. I am using acidophilus instead of the yoghurt that is recommended. Maybe after awhile I will try some homemade yoghurt. I have been off milk for a few years already, but I believe you have osteoporosis which makes an extra problem for you. I don't have that even at my age. I think there may be further information available from that site to help those of us who can't use milk products. I think you had had a message awhile back wondering if using Lactaid helps at all with dairy intolerance. The last few days I have been experimenting with eating 1/4 of a square of processed cheese with a lactaid type product. So far I have not had diarrhea, but I am constipation prone so do use a little milk product sometimes or chocolate to try to give my bowel a little hint. Sometimes I think it works, sometimes not. Actually, processed cheese is a no-no on the SCD diet as are most mile products with the exception of homemade yoghurt. Some other listed cheeses are permitted in small amts. Cheers! Ruth

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Sue (burdee), I know that you've suggested that I might have casein or lactose intolerance. Therefore, today I did a little experiment. The last time I ate a Hershey's Bar (a few months ago), I got sick after -- it might have been dairy after just going gluten-free. I know Hershey's are gluten-free, so that's not the issue. Anyway, I thought that if I have another bar and get sick, it might be casein or lactose intolerance. If I didn't, bacterial overgrowth would be my guess. I ate it at 3:40 (two of them, actually). The first ingredient is sugar, the next is milk, so there's a lot in it. I will post later...probably tomorrow, with the results of my experiment. I might bring up soy......never really thought of it, but who knows.

On other things, I am so psyched that I'll be going to that new doctor soon. Anyway, I'm planning on getting really organized with this so I'll be able to sort of fill him in on what happened through the first five months. I'm gonna have a page or so to describe my symptoms and summarize symptoms/diet for the past five months. I'll include my dairy test :D , etc. I'm also going to print the article that Karen posted here. There's one on Celiac.com, but this is a little more detailed. So, I'll have my little packet of info. Of course, I'll also talk about it, but I'm really excited to maybe be solving the problem. I can't wait to feel normal.....I feel so much more optimistic going to a doctor who knows about celiac disease...yay!

Just wanted to update. As for the book, I'm gonna see what happens with the new doctor. If I find that nothing seems to work, I might read that. I'm so excited! :D I've always hated doctor's appts.....so this is a first :lol:

-celiac3270

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No reaction -- no sickness -- no abdominal pains -- formed stools -- nothing. I doubt that it's the casein/lactose/dairy.......wouldn't it have hit me by now? It doesn't take days, does it? Anyway, I think it's SIBO still. But could I have some soy allergy? Cause it seems like a lot of gluten-free products contain soy and maybe I didn't have much before and got sick cause of gluten, now I get sick cause of soy....I don't know.............SIBO or soy is what I'm thinking at this point.

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Hi celiac3270: If you're still unsure about dairy or even soy, maybe your new doctor could test for those sensitivities?? Here's how I tested for dairy and then soy:

I didn't suspect dairy until I knew I cut out all gluten and still had symptoms. So I absolutely abstained from ALL dairy for 36 hours. Then I used 'lactose free' milk (so I knew it was casein or whey) for my dairy test, rather than something with other ingredients as well like chocolate. I had 1/4 cup when I first got up in the morning and my stomach had nothing but water (I had eaten an early dinner and nothing else the previous night). I had an immediate reaction to dairy (excessive sinus mucuous and cramping pains from my stomach all through my intestines), then a delayed reaction after 3 hours (my usual cramps and bloating which lasted 2-3 more days). When I then abstained from dairy and gluten, all symptoms disappeared.

When I substituted soy for milk, I assumed it was safe and I really 'soy loaded' unintentionally. I used soy milk in coffee, ate soy yogurt with fruit, had soy milk on my cereal and even used soy margarine. All my symptoms came back with vengence. Then I avoided soy/gluten/dairy for another week, tried a tiny bit of soy based margarine (1 tsp of Earth Balance), and had the same symptoms. 2 weeks later I tried a square (1/8) of a Tropical Source (gluten-free/CF) chocolate bar and had the same reactions.

Despite my own milk sensitivity test, my Enterolab milk sensitivity test confirmed my suspicions as well as personally corresponding with Dr. Fine about the ramifications of that result. He also said my soy reaction also sounded like an immunological response, but I didn't ask how long I would have soy symptoms. I really hoped that reaction would disappear with more healing, because I hated having to go without milk on cereal (I dislike almond and rice milks) or margarine/butter substitutes. However, I've adjusted and wouldn't mind if I never had soy, dairy or gluten again, if I could be symptom free. :)

So I encourage you to discuss all your ideas about bacterial overgrowth as well as dairy and soy sensitivities with your new doctor. Good Luck! :)

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Thank you for telling me how you tested for these things...it was interesting to read. I will discuss all this at my appt.

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