HealingWell
Search Close Search
☰

Celiac versus Crohns?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/19/2011 3:01 AM (GMT 0)
So, I am a newbie and am confused and need some insight. Does a diagnosis of Crohns rule out Celiac? Are they often co-diagnosed? Would a gluten free diet be beneficial for Crohns? Thanks for any help!
Posted 11/19/2011 3:19 AM (GMT 0)
Crohn's definitely does not rule out Celiac. Tests have shown that I do not have Celiac but I know that I am sensitive to Gluten. I find that gluten foods, among other food sensitivities, trigger IBD flares for me. I suspect that one reason why the SCD is so effective is because it is a gluten free diet. Forget food testing, I recommend avoiding gluten for a couple of weeks to see if symptoms improve.
Posted 11/19/2011 4:11 AM (GMT 0)
You can certainly have Celiac disease AND Crohn's. And, as Babe said above, there is good evidence that if you have Crohn's you are more likely to be sensitive to gluten, even if you don't have celiac disease.

There are genetic tests for celiac disease, and usually diagnosis requires a biopsy during an upper endoscopy. Crohn's disease is usually diagnosed by biopsies taken in the colon or terminal ileum, although you can really have Crohn's anywhere in the digestive system.

What is going on with you deficiencylass? Have you had any scopes done yet?
Posted 11/19/2011 4:13 PM (GMT 0)
Thanks for your replies, Babeinthe woods and kazbern. I am a bit of an oddity, as well as a newbie. My Crohns has unusual symptoms. My original problem was low B12. My GP insisted that I see a gastroenteroogist to see if we could figure out why I have low B12. The gastroenterologist did an endoscopy although he thought nothing would show, and all he saw was gastritis. When I continued to have low B12 despite supplementation, my GP insisted I go back to the gastroenterologist for a colonoscopy. Since I was near the age everyone should have one, he agreed to do one, although again he thought that there would be nothing. I have always been constipated and had what I thought was an irritable bowel (some pain/gas when under stress, but nothing else), so he was surprised to find ulcers in the distal ileum, ulcers in the ileocacal valve and erythematous mucosa in the descending colon. Biopsy confirmed Crohns. My gastroenterologist had no diet recommendations except don't eat anything that bothers you and no input on how to prevent further deterioration. I had a fluoroscopy done and it showed narrowing. The fluoroscopy took so long that the staff had me drink tea after about 6 hrs to get my system moving as they were leery about doing more pictures. A CAT scan was also done later because of some family history (as my brother had had lymphoma near his intestines years ago (originally thought he had Crohns until they went in to resection and found cancer). My life then went crazy (I have two special needs kiddos (1 Aspie, 1 w/ ADHD/anxiety)) and I am finally coming up for air 10 months later and finally being able to think about my own health. So, I am looking for advice and exploring the possibilities. For instance, do others consult with naturopaths re diets? Because of my constipation, I believe I need fiber but will this aggravate the Crohns?? I have stopped caffeine and anything too spicy, but as for anything else I am clueless. I am thinking I need a different gastroenterologist, as I don't have the energy to wrestle with him to get him to do stuff (got enough of that dealing with my kids' schools and specialists, don't need anymore stress in my life!), any input on that?? Should I being doing meds?? The gastroenterologist said he had no way of knowing whether meds were helping unless I did more colonsocopies to physically look, as usually patients know meds work by reducing symptoms, and I don't have the usual symptoms. So there you have it,kinda flailing around clueless!! Thanks for any help!
Posted 11/19/2011 6:02 PM (GMT 0)
OK, lets start with meds.

Yes you should be using meds. And based on what you've written about this GI's comments, you should be looking for a new GI. But first get this GI to prescribe you Pentasa, which is a relatively effective medicine for Crohn's in the distal ileum, and has very few side effects. You can take the Pentasa while you search around for a GI who's responsive and caring.

I call bullcrap on the idea that you can only tell if things are improving by scopes. What may happen to you is that once you start treating the inflammation in your bowel you will feel better in ways that you might not have realized were poor. And you'll have better nutritional absorption, thus not be low on vitamin B12 and feeling the effects of that. Has anyone checked your iron levels and your vitamin D levels? These are also frequently lower than normal for folks with Crohn's like yours.

As for diet, there are as many opinions on that as there are users of this forum. A lot of us will agree with your GI's general advice, which is to stop eating things that bother you. Many will recommend a food journal so you can start to think about this idea in an organized way. Some folks will suggest you research the Specific Carbohydrate Diet, which is effective for many people in treating their illness. My own opinion on this question is to approach it methodically, eliminating the easy culprits first and then reevaluating. The easiest and most common culprit of gastric complaints is lactose. Most adults will become lactose intolerant to some degree at some point in their lives. Lactose intolerance presents as upper gi gas, nausea and/or diarrhea. Lactose is present in milk, ice cream, soft cheese. Less so in hard cheese, and hardly at all in yogurt (the fermentation process uses up the lactose).

There are those who are not lactose intolerant, but react to the proteins in dairy, the casein. Cow's milk is worse for many than goat's milk. You can experiment with that.

Gluten is a common issue for many IBD patients, having nothing to do with celiac disease which is a genetic problem. If you can try a gluten free diet for 2+ weeks you might find out some interesting things. But it really has to be gluten free, and not gluten lite.

Constipation is not as uncommon as you might think around this Crohn's forum. I struggle with it and so do many others. My feeling is that my bowel's motility is screwed up by chronic inflammation. I'm working on that by experimenting with different laxatives. You might do the same - my GI recommended an osmotic laxative like Miralax for the safest approach. I started my experiments with senna, which is one that is habit forming, but also one that causes bowel constrictions and that's what I think I'm missing. The senna worked great, but I don't want to get hooked on it, so to speak. So now I'm working with Miralax to see how that helps.
Posted 11/19/2011 7:48 PM (GMT 0)
For instance, do others consult with naturopaths re diets? Because of my constipation, I believe I need fiber but will this aggravate the Crohns?? I have stopped caffeine and anything too spicy, but as for anything else I am clueless.

Everyone is clueless about diets because they are unique to each individual. You need to find for yourself what works for you. I agree with you to check to see if you are sensitive to gluten, I believe everyone who has digestive problems should be watchful for that.

I agree about getting tested for vitamin D levels, along with B12 and folic acid. Another popular and effective supplement is probiotics, and maybe fish oil.

Fiber is interesting. There are two major types, insoluble fiber such as wheat bran, and soluble fiber such as psyllium or Metamucil. Some find that insoluble fiber can irritate the digestive tract so you need to be watchful about how it affects you.

But many with IBD find that soluble fiber to be a great help. It definitely works for me with Crohn's colitis. I noticed that those with ulcerative colitis or Crohn's colitis find fiber to be very beneficial, but I never hear much from those with Crohn's inflammation of the small intestine. Maybe soluble fiber clogs the small intestine? I don't know. You need to ask somebody who also has ulcers in the distal ileum or ulcers in the ileocacal valve about the benefits of soluble fiber.

Most of the meds for Crohn's are relatively safe but since your brother had lymphoma you may want to discuss options with your doctor if he tries to prescribe the 'big gun' meds.

Post Edited (BabeintheWoods) : 11/19/2011 1:00:08 PM (GMT-7)

Posted 11/19/2011 10:07 PM (GMT 0)
Thanks for the really helpful reply, kazbern. You are right, I am low in vitamin D (27 ng/ml) as well, and have been for 10 months at least. I just had a physical this month because I told my GP that I am still feeling chronically tired.  I am taking (again!) a 2 month course of once per week 50,000 au vitamin D.  Of course, I am also hypothyroid, and am taking Levoxyl (137) once per day. I am sceptical that this is sufficient as I am still chronically cold/tired/depressed.  I had to insist that the GP check T4 as well as TSH, as she was only measuring TSH. It's probably time to find an endrocrinologist as well, as I have for the past 13 yrs just got Levoxyl prescribed by my GP.  I have been taking B12 shots every 2 weeks, but the level  has not increased and I am still deficient. I will be starting once every 10 days instead starting next week.  My iron was in range, but on the low side (58 mcg/dL, where the range is 40-175).

Have you worked with a naturopath on your diet, or are you figuring it out on your own?  I have been using GasX when I was uncomfortable and this has worked. Do you know whether this is okay?  Someone recommended super omega supplements (omega 3,6,9), do you think this might be helpful?

Thanks again!

Posted 11/19/2011 10:41 PM (GMT 0)
Deficiencylass, good catch on the omega 3's. I take flax seed oil to help get me more of the good fats. Most research shows that fish oil has a better balance of omegas for those of us looking for the antiinflammatory effects, but I have ecological issues with fish oil and won't take it. I have been using flax seed oil for many years, and while I can't guarantee that it is helping me, I am sure it is not hurting me.

Babe is also right about soluble vs. insoluble fiber. My first diagnosis was ulcerative proctitis, and that GI recommended a fiber supplement. It made me feel awful. I ended up trying to include as much whole grain in my diet as I could, plus legumes and fresh fruits and vegetables, according to how I was feeling. Later I learned that I probably had inflammation in the small bowel and used a low residue diet, which definitely helped in feeling better, but I don't really like to eat that way.

Now that I'm gluten free, most whole grains are out, except for brown rice and gluten-free oats, which I do eat often. Oats have soluble fiber, brown rice I think is insoluble. I still have issues with motility, but I think that eating these whole grains is good for me.

I have not consulted a nutritionist or a naturopath. My dad's a doctor, my sister's a vegan and I'm an engineer. Plenty of intellectual thinking about food around here, LOL!
Posted 11/19/2011 11:16 PM (GMT 0)
Thanks for the reply Babeinthewoods. I am a big raw fruit and veggie eater because I tend to gain weight and they fill you up (and the fruit helps with the sweet tooth!) Is the fiber in say, carrots, soluble or insoluble?
For the gluten I would just try abstaining for 3 weeks and see how I feel? Or is there some test available to show sensitivity? BTW, this is so deja vu for me, since this is a BIG ongoing topic in the autism community and my older daughter has Aspergers!
Posted 11/20/2011 12:26 AM (GMT 0)
I think there are some blood tests that look for specific antibodies related to the digestion of gluten. Wikipedia has a pretty good page on the topic. But IMO, going gluten free for a few weeks is a pretty darn good test. For me, results became apparent right at the 2 week mark and I haven't looked back.

As for soluble vs. insoluble, I'm not sure how to tell, but again I think google is your friend in this quest.
Posted 11/20/2011 5:11 AM (GMT 0)
Thank you to you all. I am new with this and everything you have said has been very helpful. First I read that taking magnesium helps with constipation and that people with ibd are often lacking it like so many other vits and min. Second I want to suggest asking for a full allergy panel. The one that is blood tested and tests for 88 or more foods. I say this because my daughter was recently diagnosed with a wheat allergy 3 months ago. (she gets a genetic celiac test in feb). My sister has a wheat allergy as well so I went on a gluten free diet with my daughter in hopes this would help with my stomach issues. At first it did but half way through it stopped and I started getting worse but not my normal very painful worse just more trips to the bathroom. Well I just found out last week that I have a high allergic reaction to rice. And most everything that is gluten free is is made with rice flour. And I eat rice noodles or just plain old rice. So I was actually doing more damage then good. Rice allergy is not common in the states but in country where it is eaten all the time(Asia) it is more common. So I think more that people are on gluten free we will see an increase in tht as well. Sometimes it feels like we just can't win! I al showed a moderate reaction to yeast. I just feel knowing what you are actually allergic to is the first step in finding a diet right or you. Thanks again for the info ladies!
Posted 11/20/2011 5:37 AM (GMT 0)
I did the gluten free & lactose free diet for almost 3 months and didn't see any change in my symptoms so I went back to a normal diet. Well, that of course is normal for me, which is a low fiber/low residue diet. I was never really able to tolerate a high fiber diet and like you, I often lean towards constipation. My solution is just to take a mild laxative/stool softener when I need it. I also keeps lots of immodium around just in case too.

My GI just recommended that I get the book "Breaking The Viscious Cycle" and try that diet, which is called Specific Carbohydrate Diet (SCD). I've flipped through the book but don't really think that I can pull off the diet. It's a no grain, no starch and no sugar diet and I just don't think I can give all that up permanently. If I do give it a try, it won't be until after the Holidays.

Although I doubt it will work for me, you might consider giving this a try. This diet has been widely reported to be beneficial for people with all types of Autism, including Asperger’s. So, this diet might well benefit your children too.

 

There are blood tests which can help determine if you have celiac or are gluten sensitive. You can also have an upper endoscopy and have bbiopsies done to determine if yo have celiac.

 

As far as meds go, we all need to be on them. However we each benefit from a different medication regimen and you will have to work with your GI to figure out what benefits you the most. When first diagnosed, many of us begin with some dose of sterids because that is the quickest acting medication to reduce inflammation and help heal ulceration. However, prednisone is not without side effects that many of us can't tolerate. Entocort is a sterid which has less side effects because it's release in the bowel as a type of topical steroid and has less systemic side effects.

 

Beyond sterids, there are 2 schools of thought where meds are concerned. The first is "bottom up". With this method, we start at the lowest level of med and work our way up if those meds prove ineffective. This starts with 5ASAs, aspirin-like meds such as Pentasa, Asacol and Colazol. Then we move up to immune suppressants such as immuran, Remicade, humira, etc.

 

The second school of thought is "top down" where we are started on the stronger immune supressants right away.

 

It sounds like your GI is just not sure what to do to help you and I think getting another opinion is in order. Leaving Crohn's untreated is like waiting for a time bomb to go off. IMHO, Crohn's is a disease that never really goes away, it only goes into remission. That said, using meds to get us into remission is the goal. Although some believe meds can be stopped while in remission, I believe we need the meds to help keep us there too. Of course, we all need to find what is right for us in all aspects of this didease - from meds - to diet - to lifestyle.

 

I hope you find what's right for you soon.

Posted 11/20/2011 12:51 PM (GMT 0)
The bottom line is that there are many conflicting opinions on this site re diet. Some feel it is important, others do not. Some feel diets are easy, some say they are tough. I have asked diet questions here and have always received conflicting recommendations. These recommendations have been given with the best intentions and are based on real experience. The issue is that each of us are so different.

Knowing what I know now, I would say there is not short cut answer re this subject. You have to do the research for your family and re diet I do not think this site provides enough information to make decisions ( I say re diet as I get great information on other subjects here). I bought books and looked extensively at Makers, Gap, Palio, LowRes, Low Carb, SCD, Nourishing Traditions, Live Without Bread, MAP, and others. You will see that each of these diets contradict in some way and some completely contradict. That is why asking here will get you contradicting opinions and going to the nutritionist is the same. The nutritionist will align with a diet and give their OPINION. Now I have read all the books I do not believe their OPINION, is better than mine. Sorry. I know you have tons on your plate and all you want is the "answer" but unfortunately I think the take away is diet is important, but what diet needs more information than can be gathered here.

I have been doing SCD for a couple of years and it works for me. That means it has put me in remission and reduced the requirement for meds.

I suggest you look at the site pecanbread.com as part of your research. It is a site for parents that are treating disease , mostly autism, with the diet. Some folks find it tough to do, I am lucky as I do not. The diet is basically "eat healthy food all the time". As I believe there is a connection between how we feel and what we eat this diet makes sense to me and I prefer to eat healthy all the time anyways.

hope this helps at some level

Dave
Posted 11/20/2011 3:07 PM (GMT 0)
Diet is individual..I am currently on gluten free..The symptoms even though I am CD were so similar to Celiac I decided to give it a try..At my worst, I was low residue, baby food, and liquids..I read about SCD ect and was like no way! SCD is much more restrictive than Gluten Free..With hypothyroid and CD like myself, it is hard on the tiredness and other symptoms to know which one is causing it! I still might try SCD..I swing back and forth now between constipation and IBS symptoms when I was inflamed it was straight D..My father who had UC had the same problems..I have certain preservatives that I have trouble with..My husband was recently diagnosed with uncontrolled so SCD may be good for both of us! I think whatever is healing to your system diet wise and allows your body to start absorbing nutrients again is beneficial..I like you suffered at one point very bad with CD gastritis and nausea.. Every time they looked into my stomach the lining was bleeding and inflamed with no Hpylori or cancer..Many Cd medications just made me feel worse and I had a hard time tolerating them..I just tried Sulfazine again as a remission drug and got four days into it only to abandoned ship! The only CD medication I am on now is predisone..The weight gain after almost three years is awful!
Cindy
Posted 11/20/2011 7:16 PM (GMT 0)
Thanks for all the input/insight cindywchrones, dfdavedf, Keah, Padme, kazbern and BabeintheWoods. I am so glad I found this forum, you have all been extremely helpful! I think that, knowing my energy level (extremely low right now) and dealing with my kids' issues (the definition of high maintenance!) as well as my own, I think that I'll just look into a naturopath and have some tests run.  I don't have the energy to do a lot of research and set up a new diet unless I know that it has a fair chance of actually helping.  I will find a new gastroenterologist (there is only one listed on CCFA that is local, so I guess she's my best bet).  Thanks again!
✚ New Topic ✚ Reply