ID-10099482

It is Possible to Have Both Celiac Disease and I.B.S.

Like many, I had a long delay in my diagnosis of Celiac Disease and walked around for years with a label of Irritable Bowel Syndrome (I.B.S.) Once I was diagnosed with Celiac Disease in 2010, I threw my diagnosis of I.B.S. in the garbage. From a medical standpoint, I have ignored discussions and articles regarding I.B.S., digestive problems in fibromyalgia, “functional bowel disease,” FODMAPs, etc. because I have assumed that they do not apply to me. Also, the largest patients I take care of are about 12 lbs., and, fortunately, do not suffer from I.B.S.

I have been trying to search for answers as to why so many of us with Celiac Disease also have multiple food intolerances. With our villous blunting and poorly functioning small intestines before diagnosis, it makes physiologic sense to have a temporary lactose intolerance. I had severe lactose intolerance when I was first diagnosed with Celiac Disease and was unable to tolerate dairy until I had been gluten free for at least 6 months. I can now tolerate a moderate amount of dairy without the development of GI symptoms. However, since being diagnosed with Celiac Disease in 2010, I have developed intolerances to both soy protein (after one year of being GF) and sulfites (right around my two year anniversary of being GF). When I ingest soy proteins or sulfites I have immediate digestive distress followed by a “delayed” onset of inflammatory symptoms about 24 hours later.

Recent research has shown that I.B.S. patients often have multiple food intolerances, of which wheat is one of the most common. A group of Italian researchers published a paper last fall that highlighted that many patients with “wheat sensitive” I.B.S. have other food intolerances, the most common of which are dairy, tomatoes, eggs, and chocolate. I did write a bit about this last December in a post which I titled, “What Now, Wheat Sensitivity?”  The original research article by Carrocchio, et al. can be found here.

Although I used to think of I.B.S. as being a “diagnosis of exclusion,” I have confirmed with the University of Chicago Celiac Disease Center, as well as two other gastroenterologists, that it is possible to have both Celiac Disease and I.B.S. With my development of multiple food intolerances and “super sensitivity” to traces of gluten, I believe that I may have both Celiac Disease and “wheat sensitive” I.B.S. Through my online interactions with many other Celiacs, I am pretty sure that I am not alone in this either. Due to the plethora of information regarding Celiac Disease on the internet, we are fortunate to be able to read and learn a lot about the treatment for Celiac Disease (which, as we know, is the gluten free diet). We have much less information about what to do about I.B.S. symptoms. In my case, I was totally in the dark as to the fact that I probably still have I.B.S., as I figured that all of my gut problems and symptoms were from untreated Celiac Disease.  However, in reading up on I.B.S. for this article, I have learned that April is I.B.S. Awareness month.  There is also a huge online IBS support forum which can be found at www.ibsgroup.org.

In brief, I.B.S. is a chronic condition of the digestive system of which the most common symptoms are abdominal pain and diarrhea and/or constipation. It is estimated that 10-20% of the U.S. population, at any given time, meets criteria for having I.B.S. Although the exact cause of I.B.S. is unclear, current theories include that it involves having a “spastic” colon, a history of a previous GI infection, food intolerance(s), stress, and/or overactive nerves in the GI tract. Current treatments for I.B.S. include dietary changes, psychological therapies, and medications, including antispasmodic drugs, antidepressants, and anti-diarrheal therapies.

The low FODMAPs diet (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) is one of the most popular nutritional treatments for I.B.S. The underlying theory is that an alteration in small intestinal gut flora leads to the fermentation of short chain carbohydrate components (FODMAPs) in the large intestine. Fermentation by colonic bacteria causes adverse symptoms such as gas, abdominal pain, diarrhea, and constipation which can lead to I.B.S.

FODMAPs include the following: fructans (found in wheat, rye, onion, garlic, artichokes, asparagus, and chocolate), fructose (found in honey, fruits, high fructose corn syrup), galactans (beans, lentils, and legumes, such as soy), polyols (found in apples, apricots, cherries, nectarines, peaches, pears, prunes, watermelon, blackberries, avocados, mushrooms, and artificial sweeteners, such as mannitol, soribtol, and xylitol), and lactose (dairy).

For more on the low FODMAPS diet, please refer to the Stanford Digestive Health Center Nutrition Services website.

At this point my GI symptoms are under control on a gluten free, soy free, sulfite light, and “modified” paleo diet, so I am not going to adopt a strict low FODMAPs diet, nor any other I.B.S. treatments, unless I develop symptoms that warrant it. However, reviewing I.B.S. has reminded me that my periodic episodes of digestive discomfort may actually be due to I.B.S. symptoms as opposed to “glutenings.” I spent a lot of time during my first year after diagnosis trying to figure out why I kept getting “glutened” by GF foods, such as soy flour, Gatorade, lentils, and cranberries. Looking back, I was likely having I.B.S. type symptoms from FODMAPs. Also, it is entirely possible that the GI discomfort that I experience from ingredients such as xanthan gum and carrageenan may be due to I.B.S. as well (as opposed to Celiac Disease).

A dual diagnosis of I.B.S. and Celiac Disease may well explain why many of us have multiple food intolerances, symptoms of leaky gut, and/or better responses to probiotics than others with Celiac Disease. Is I.B.S. a manifestation of an innate immune response to both gluten and other food proteins in some of us with Celiac Disease? Is it I.B.S. that actually causes a leaky gut in some of us or is it a leaky gut which causes I.B.S. symptoms? I hope that we will someday have answers. In the meantime, I hope that we can all find the best diets for our individual needs and intolerances without having to go too crazy or jumping through too many hoops.

Happy Spring to all of you!

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12 thoughts on “It is Possible to Have Both Celiac Disease and I.B.S.

  1. Barb

    I have sometimes wondered if I also have IBS in addition to celiac or whether I just haven’t figured out all my intolerances yet. I can tolerate small amounts of dairy; generally I stick with butter, cream and sour cream. You mentioned a reaction to soy; I recently had a nasty reaction to soy that seemed like a slightly milder “gluten” type reaction followed by 2 to 3 days of bile acid malabsorption diarrhea. By the third day things were starting to go back to normal. I just read an article on about.com that indicated that soy is often contaminated with gluten because it is a rotation crop in wheat fields. It is so confusing!! My GI doc is not much help. He thinks I should be able to eat anything but wheat, rye & barley!

    1. Jess Post author

      Hi Barb,
      Thank you for reading. Yes, it is definitely difficult to sort things out. Keeping a detailed food journal has been what has helped me in the past. I have not had too much success getting any help from my GI doc (he claims that I should be able to eat all foods, except for wheat, barley, and rye without a problem, similar to what you describe).
      When it became clear that I was a getting sick from soy a few years ago (pretty immediate GI symptoms, followed by nausea, heartburn, and then joint pains and a right sided headache the next day), I too wondered if it was from gluten contamination, as I read a bit about that. However, I am pretty sure that it is a different immune reaction, as when I get “glutened” I do not get nausea, heartburn, or headaches. Instead I have immediate diarrhea, bloating, and abdominal pains, followed by a low grade fever,”brain fog,” and diffuse joint pains the next day, and then about 5-7 days of mental sluggishness, fatigue, mouth ulcers, bruising, then and numbness and tingling in my hands and feet (a peripheral neuropathy).
      I think that someday we will have a lot more answers to all of this, but it will be a long time from now. The good thing is that so many of us are figuring out which foods are making us sick, so we can avoid them and have an improvement in our quality of life. I would never in a million years choose to go back to feeling how I did on a daily basis before diagnosis with Celiac Disease!
      Jess

  2. Urocyon

    (Cont.)

    From one paper I found:

    There are vitamin D receptors on Th cells. Vitamin D works with mediators for the suppression of autoimmune disorders. With inadequate vitamin D, this suppression can cease to occur, increasing the instance of Th1-driven diseases.[15] The relationship with vitamin D and IBS is cyclic. Autoimmune disorders are associated with vitamin D deficiency, but then can also cause vitamin D deficiency. The malabsorption caused by IBS results in deficiency of vitamins absorbed in the intestines, which includes vitamin D.

    Just throwing that in, since it may be another piece of the puzzle. Sometimes it gets frustrating, needing to figure out and research so much on our own.

    I hope you have good luck with your dietary changes. :) I’ve been avoiding obvious triggers, and drinking a lot of homemade kefir for probiotics, but haven’t had the spoons available to make any larger changes so far. It’s starting to look like a good idea, with the probable leaky gut, and I’ll be interested to see how your plan works out!

    1. Jess Post author

      Hi Urocyon,

      Thanks so much for the information about the possibility of Vitamin D being a key player in all of this. Thanks for your link to the Medscape article. I did search the medical literature for any research showing a link between Vit D and I.B.S. and I found one case report and one letter which were recently published:

      1. BMJ Case Rep. 2012 Dec 13; 2012.
      Vitamin D3 as a novel treatment for irritable bowel syndrome: single case leads to critical analysis of patient-centred data; Sprake EF, Grant VA, Corfe BM.
      Abstract
      Irritable bowel syndrome (IBS) is a chronic and debilitating functional disorder of the gastrointestinal tract with serious and detrimental impacts on quality of life. Its aetiology is largely unknown and the identification of effective management strategies remains far from complete. This paper first reports, a case of a 41-year-old woman IBS sufferer who reported significant symptom improvements with high-dose vitamin D3 supplementation. The sufferer identified a substantial body of patient data surrounding this potential therapy on social media sites, and this paper, therefore, also reports the findings from a systematic analysis of patient-centred, internet-based data surrounding this phenomenon. Data from 37 IBS sufferers commenting on the effect of vitamin D supplementation on their condition were located; approximately 70% of these reported that high-dose supplementation improved their IBS symptoms. A randomised controlled trial into the effect of vitamin D supplementation on IBS symptomatology to test this association scientifically is merited.

      2. Aliment Pharmacol Ther. 2013 Feb;37(4):499.
      Letter: vitamin D supplementation and the irritable bowel syndrome; Karaahmet F, Basar Ö, Yksel I, Coban S, Yuksel O.

      With our epidemic of Vitamin D deficiency in the U.S. (2/3 of adults) and I.B.S. (10-20% of adults) it will be interesting to see what pans out. It is also fascinating to learn that at least some researchers are looking at I.B.S. as a possible autoimmune disorder; it reminds me of the research on Celiac Disease from about 20 years ago.

      Jess

  3. Chrissy

    For 8 months I suffered from persistent diarrhea. The worse bout of it was last summer. I had it from the time I woke up, all day, all night and the cycle repeated itself each day.

    I was to the point where I just wouldn’t eat because working full time I had my own patients to take care of (medical assistant in OB/GYN) and I couldn’t keep running to the bathroom.

    It was so bad I think last June that I was out of work almost 6 full days. Two ER trips later, docs telling me I was glutened and I knew good and well that was NOT the case, a follow up with the PCP, and they prescribed me Bentyl & Belladonna. I keep both on hand at all times because when it hits those are the only two medications that help my flare up. I don’t have as many flares ups as I did before as I am now a stay at home Mom, but when I do have them they are just as bad as before.

    I like you try to eat as paleo as possible, stay away from the dairy, and cut out as many triggers as I know how too, but with my celiac guts my body just does what it wants at times. Stress is a big trigger for my flare ups and that is sometimes hard to control as well.

    So glad you shared this story and article! :)

  4. Jess Post author

    Hi Chrissy,
    Thanks for reading and sharing your story on here. I think that it will help others to learn that there are at least a few of us who have both Celiac Disease and I.B.S. going on. I definitely reached a point where I knew that it was impossible that I was getting “glutened” as often as I was having symptoms. Thankfully, as I’ve changed my diet things are much better controlled for me.
    By the way, I love you FB page and videos and I recently joined your support group. Thanks for all that you have done for the Celiac community! I actually saw one of your videos on YouTube last year, about crazy things that people say to people with Celiac Disease, and I did not put 2 and 2 together that it had been you until recently. I remember relating to a bunch of them. Also, I’ll definitely let you know when I am in FL as I would love to attend your in-person support group too!
    Thanks for reading and I look forward to connecting more through social networking.
    Jess

  5. Pingback: Nonresponsive Celiac Disease | The Patient Celiac

  6. Lynn Osuchowski

    I have been trying to figure out all this for the last 30+ years. As a child in the 50′s and 60′s being “allergic” to milk was about the only thing acknowledged. There was no testing, no medication, no doctor that would go beyond the norm. It wasn’t until I was in my twenty’s that all the effects of these food reactions started to coalesce into a bigger problem. I would try an limit eating certain foods and looking for my reactions. I would try and get doctors to understand my concerns, symptons, and reactions. Most of the time I was ignored or told to just stop eating something. Organic foods were a thing of the future. Health food stores were a “hippie enclave” that a good ‘ole midwestern girl did not go visit. family gatherings were a trial because of my eastern european heritage most of the food was stuff I shouldn’t eat. Everything came to a head in my early 40′s. First, I stopped breathing when I ate something I never had an issue with before, a Chinese dinner with soy sauce and msg. Doctors told me to stay away from soy and msg. Next, I had a heart attack. My immune system, having been on overload for so long, went crazy when i had a viral infection. It not only attached the infection, it attacked my heart. Result, idiopathic cardiomyopathy and congestive heart failure. But still I had a hard time getting GI doctors to understand the extent of my digestive issues. Next the IBS found me in emergency rooms several times with severe gastro and abdominal distress. Now at 57, I find myself with only my GP and cariologist who has a clear understanding of all my issues. I still haven’t found a GI that acknowledges the combination of diseases and proper treatment. I take a lot of prescription meds these days. I have a very restricted diet, which I’m not consistently following. I’m glad the medical community is finally recognizing that this isn’t just one issue. Maybe in my 60′s I’ll finally find the right treatments and meds and be able to enjoy what seems so natural for most everyone else–enjoying the food they eat.

    1. Jess Post author

      Hi Lynn,
      I can’t imagine what it must be like for you to have lived for decades with symptoms related to the food(s) you are eating. I am glad to hear that you’ve found two doctors who listen to and support you. I am only 3 years into having a Celiac diagnosis, and with my additional food restrictions there are days that I feel like I cannot eat anything safely. This alternates with days and weeks where I am thankful for all of the foods that I can eat, like a big, beautiful bowl of fresh berries that I had for lunch today. I would have taken such food totally for granted before my Celiac diagnosis.
      I am not sure what part of the country you are in, but we do have a local doctor who is board certified in both gastroenterology and integrative medicine. He seems to really understand the impact of nutrition and food on overall health and diseases. If you email me at thepatientceliac@gmail.com, I can share his name and info with you. I am not going to write where I live on here because I am trying to maintain a degree of privacy on here (which, I’ve found is difficult to do once you start a blog!)
      Thanks so much for taking to time to write!
      Jess

  7. Pingback: Celiac Disease and Multiple Food Intolerances | The Patient Celiac

  8. Hazel Buen

    I am a full time caretaker of my 69 years old celiac diagnosed mother she was diagnosed only last June here in the Philippines. A rare case in this country especially where we lived it is difficult to find gluten free food. Aside from this disease she has creatinine and electrolytes abnormalities. She sits in the toilet at least 8 to 11 times within 24 hours, her stool is oftentimes liquid with small yellow flakes like solids, she doesn’t eat well, suffers vomiting, has pain on her left underside breast and has lower abdominal pain attacks. Is this normal for her age?

    1. Jess Post author

      Hi Hazel,
      I am sorry that your mother is going through this. Her symptoms do not sound normal for a 69 year old woman at all and it sounds like she may still be getting gluten into her body. For many of us, all that it takes is exposure to 1 or 2 crumbs to start gluten’s attack on our bodies. Is it possible that she may still be getting small bits of wheat or gluten into her body? It sounds like she needs to see her doctor (or whoever it was that diagnosed her with Celiac Disease) very soon.
      Jess

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