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SIBO and me

>> Monday, April 19, 2010

I left you again. I'm sorry. Problem is, I haven't been feeling so hot. It seems like just when I get one ailment under control, another pops up in it's place.  I am not here to throw a pity party, I'm mostly here to make excuses for why I have neglected my blog and it's readers.

There are no recipes here and no pictures. It's probably a pretty dry read and if you want to skip it, that's a-okay with me. I plan to have a recipe for you tomorrow and you can check back for it then.

This entry is a bit of a primer on my main health issues and how I ended up here. SIBO (I think) is what caused the symptoms that made me decide to try an elimination diet and what  led to me becoming the gluten freebie you now know and love. Once I cut out the gluten, the SIBO seemingly went away for quite a while and I was feeling pretty durn good and pretty durn proud of myself for being able to eschew the ingredient that lurks within almost all of my favorite foods. Now, it seems, SIBO has found me. Even without gluten as it's guide. I'm feeling those symptoms that drove me to the doctor the first time. I will try not to be too graphic but I get asked about this stuff a lot. If you are acutely sensitive to discussions of an intestinal nature, maybe skip this section.  I know I use the internet as a resource to find others who are experiencing symptoms like me and I want to add my voice to the growing discussion about SIBO and how to deal with it and I also want to help educate people who might recognize these symptoms in themselves or might just be curious about what people with SIBO experience.

Here are some of the symptoms that have returned to let me know that my intestines are once again overpopulated by sugar-hungry bacteria.
1. Noises. These bacteria like to party and it makes my stomach sound like there are lions in there having a nice long chat about the rain in Spain or something.
2. Gas. I will leave it at that so those of you who know me in real life can continue to look me in the eye.
3. A swinging pendulum of bathroom issues. I think that sums it up nicely.
4. Cravings like you would not believe for carbs of all kinds, rice, g-free pasta, chips, fruit. I want it all, all the time.
5. Tightness or pain in my stomach
6. Feeling like I swallowed a few gallons of wet cement and they hardened in my digestive tract
7. Fatness. The first time I had SIBO I gained about 25 lbs in about a month. It was scary. This time around, I haven't gained that much weight that quickly but I bloat very easily and pants that fit me with room to spare one day will be impossible to zip the next.
8. A hard to describe feeling of being unwell. Just not feeling like myself.
9. Feeling tired and easily worn out

The first time I went through these symptoms I took a hydrogen breath test (then four subsequent tests to determine if my bacteria levels were back to normal.) The test consists of not eating after eight PM the day before then drinking a cup of sugar solution in the doctors office. For four hours you sit in the doctors office, breathing into a tube every twenty minutes. The test measures how much hydrogen is produced by the bacteria in your system processing the sugar solution. The first time I took the test, it was clear to the doctor that I had SIBO. He put me on my first round of very expensive antibiotics then tested me again, My levels were even higher. We tried a combo of two different types of antibiotics and my levels tested higher still. Finally, after months of tears and frustration I had a blood test done on my own time and my own dime (no help from insurance) to determine if I might have food intolerances that might be causing these bacteria to continue to multiply. The test results provided me with some lists, one of food to avoid completely for 6 months, one of food to avoid completely for three months and one of food to rotate and only eat once every three days.

With this information I went on a very strict rotation diet for 6 months. I did not eat any wheat, onions, garlic, almonds and apricots and I limited dozens of other foods. Sounds random, I know but I was desperate at this point. After a few weeks on the diet, the weight began to melt off and symptoms began to dissipate. I went back to the doctor for a breath test and this time, even though I didn't take any antibiotics, my SIBO test was negative, the bacteria levels in my small intestine had returned to normal. My doctor was pretty surprised, he didn't think cutting out gluten would make any difference but it was obvious that it had.

In my research I have learned that gluten intolerance can really do a number on one's body in ways you might not imagine. I am pretty sure my iron-deficiency anemia is caused by malabsorbtion due to gluten intolerance and it seems like there is a pretty clear correlation between cutting out gluten and getting rid of SIBO. All that said, I have been gluten free for about a year now and the SIBO and anemia still seem to be making trouble for me. This week I am scheduled to have a four-hour I.V. iron infusion that will hopefully boost my blood iron levels and re-train my body into producing and holding onto iron. The SIBO symptoms come and go. I have not been 100% gluten free for this year and it's possible that eating gluten even in tiny and infrequent amounts has damaged my digestive tract or caused my digestion to become unregulated, allowing bacteria levels to build back up.

It seems the most common method of treating recurring or chronic SIBO is a very strict diet. My doctor wanted me to go on an entirely liquid diet for 3 months but my insurance would not cover the diet (it consisted of cans of aspartame-rich, sugar-free liquid. Yummy.) Through internet research I have discovered that many SIBO sufferers go on an entirely sugar free diet. This is scarier than it might sound at first blush. No fruit. No grains. No carbohydrates of any kind. SIBO bacteria live off of sugar. That is all they eat. If you want to starve them out, they can't have even a speck of sugar and this is a very tall order. I am not ready to try this diet yet and I don't know if I ever will be. Food is my life. It is my passion, my career, my happiness. I think about food when I wake up in the morning and daydream about it all day. The idea of building a life where I the thing I enjoy most is severely restricted to the point of near elimination is more that I can handle at this point in my life. If my symptoms get worse or become more frequent, I may change my mind but for now, I am just stuck here. I am hoping that the iron infusion might offer some relief for some of my symptoms and I will keep you posted on how I do. My real hope is that I feel well enough most of the time to post recipes and stories regularly without feeling the need to even mention my illnesses or how I feel.
Thanks for bearing with me. Now back to your regularly scheduled program.

5 comments:

girrlockholmes April 19, 2010 at 5:41:00 PM PDT  

Wow, I love this post; thank you for sharing in intimate detail your experiences with SIBO. Thanks for adding to the growing discussion, as you put it. I totally found this blog in my regular blog trowls for SIBO, but I will no doubt be back to see how you are holding up.

Its interesting; I am also someone who has trouble with weight in relation to SIBO. I know that you know that this is kind of rare; since SIBO is basically a malabsorption issue, most people waste away with it. But I've always had trouble with extra weight, and whenever the SIBO is coming on strong, I gain more. I recently started treatment for low thyroid and the weight issue is getting easier. Have you had your thyroid checked because SIBO can definitely be caused by a low thyroid: http://jcem.endojournals.org/cgi/content/full/92/11/4180

I've met a few others who deal with weight gain along with the rest of the symptoms, and a lot of others with low thyroid function.

Sugar-free is hard. It is for life, but it isn't completely without well-timed breaks. And it can really manage symptoms. But I am known to break down and eat a cupcake now and then and just suffer. ;)

Good luck with the iron infusion. I haven't heard of that as a treatment for SIBO. However, since gut bacteria like to leech iron from their host and use it to form biofilms to keep out antibiotics, it makes perfect sense that you would struggle with anemia. I seem to be ok with serum iron but am currently supplementing to get my low ferritin (20!) up. I am experimenting with Lactoferrin, which supposedly helps keep the iron from foreign bodies. You may want to look into it; I haven't tested since starting to use it so I can't say if it is helping or not.

Callie @ The Picky Gourmet May 3, 2010 at 8:58:00 PM PDT  

Thanks for your comment! Your blog is one that really inspired me to be more open on my own. Your blog is so helpful and I really appreciate all you do to educate and inform people.

I have had my thyroid checked a few times and my numbers are all normal. I don't expect the iron infusion to help with the SIBO, I am just hoping it helps me keep my iron so I can have more energy and feel better all around.

I have reduced my sugar and carbs a lot and lately I've been feeling pretty good (aside from a hellish cold.)

It's so easy to slip into bad habits when you feel good but I am trying to get my system under control (ha!) and like everything, it gets easier with time.

Thank you for all the helpful info, I will keep my eye on your blog and twitter!

Saving Yia Yia May 4, 2010 at 9:06:00 AM PDT  

Thank you I love your post. I have been researching for 4 years now to help my mother-in-law. Although she is 85 and there are other issues the last 4 years with her stomach have been rough.

She has now been diagnosed with SIBO I finally got someone to listen to me. She is just starting the antibiotic and feels wonderful. I know the next step is probiotics but I am still not sure how to attach the diet end. Is thee a simple list of foods that should a no no? Below is her history ina nut shell. I need help to help her I am so unsure about the diet.
My Mother in law was diagnosed with IBS 4 years ago. I have made it my mission to help this woman. After 4 years of researching IBS, a friend that was diagnosed with SIBO and a very nice Doctor I hope she is on the rode to recovery.

She is the sweetest woman.
Four years ago she had a Hernia operation that ended up infected and literally exploded while she was at home. Since then she has never been the same. There were times I didn't think she would make it. Her gastrologist was treating her for IBS so I researched and I showed her how the diet should work. At least then we had the diarrhea under control and she could leave the house for short period of times.

A friend told me about SIBO last summer. When I brought it up to my mother-in-laws doctor he really didn't know too much about it. I told him I read that it is treated with antibiotics and probiotics. So he put her on Tetracycline. Within a day it was like a miracle. This continued for 8 months and she was down to 1 pill a day. Next came the hydrogen test it came back negative. I asked her doctor why is the Tetracycline working he had no answers. I am not convinced she doesn't have SIBO so I ask if he could refer us to this Doctor I wanted her to see he agreed and she agree's to see this new doctor.

He sat with us for an hour I had all my facts and the history of what we have tried and what works and what doesn't he documented everything. He suggests doing the hydrogen test again. We take the test again and High levels of SIBO (SURPRISE NOT). I went to all her appointments for the past 4 years and I told them I don't get it if the Tetracycline is helping doesn't that mean there is some kind of infection??? No answers!!

She starts the Rifaximin this week and then the probiotic he also recommended this book he said it is the best one out there "IBS Free at last" by Patsy Catsos.

If I didn't stick with this I don't know if she would be here right now. She lost 50lbs in a year, she is 85 and no one should have to live that way. So I tell her all the time I am going to write a book about her called "Saving Yia Yia. That is grandmother in Greek.

I just hope this helps someone some day because I know if she didn't have me there pushing her and the doctors she might now be here today.

From a botched Hernia operation to a misdiagnosis the Doctors are not GOD but the elderly treat them that way and they settle for what ever they tell them...

Anonymous,  May 19, 2010 at 3:04:00 AM PDT  

Hi

You can try a FODMAP free diet to starve them out or at least be symptom free. This cuts out poorly absorbed sugars only, rather than all carbs. So no wheat, onion, garlic, as already mentioned, but there's a few more. You can have some fruits, loads of veg, and pretty much all the gluten free grains. It's basically a stricter form of the fructose malabsorption diet.

Good luck.

I.P.

Anonymous,  June 17, 2010 at 7:18:00 AM PDT  

I was diagnosed with SIBO after several years of just awful intestinal cramping -- would last for several hours, then "run away train" bathroom activities. I had this so bad that I developed saddle numbness -- very scary -- as the intense and frequent bathroom episodes put pressure on my back, irritating my spinal cord and leading to the numbness issues. By the time I went in for a colonoscopy, I could describe my symptoms and the onset of episodes in minute detail -- so much that the doctor started to laugh at one point because it was almost textbook for SIBO -- a condition I had never heard of. (I originally thought the pain was related to endometriosis, which I had suffered with for many years.)

For me, the real killers are diet soda, bread, pasta, corn, chocolate and sugar. Sometimes salads can cause stomach problems, but it might be the dressing. When it was at its worst, I would eat anything and within a half hour to 45 minutes would have terrible stomach pain. I was afraid to go anywhere without a bathroom nearby.

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