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Posted 7/22/2008 2:57 PM (GMT 0)
Hi all,

I thought after 6 months of no gluten I should report. the first paragraph will be my history, so long-timers can skip it they like. March '06 I was suddenly very ill with a fever, fatigue, and gut pain mostly around my belly button. I had a sbft, c-scope, MRI and Ctscan, and all showed crohns. scope showed 15 cm of ulcers, lots of inflammation, etc. I never had D, but lots of C. I was put on 80 mg pred for a couple months, and inflammation went away, never to be seen again, as did ulcerations. however, pain (to the point of me being on pain meds around the clock) and C never went away. I tried remicade and humira and they did nothing. My GI suspected I had adhesions from previous surgeries and I had two surgeries in '06 to cut them. that helped lesson the pain some, but it was still bad. I hurt a lot every time I breathed and the worst thing was I had no energy, weighed nothing, and napped all the time. finally, they wanted me to see a surgeon again, so I followed the advice of all my friends and went to a naturopath on Dec '07.

I had been tested early on for celiac, and it came back negative; however, the tests the naturopath did showed a high gluten intolerance. I stopped gluten completely on Jan 12th and my recovery has been a miracle. the first three weeks showed no change, and then a light turned on and I felt great. pain is very light (no need for meds, ever) and I can eat all the fiber I couldn't eat when I was sick. I still need metamucil and glycolax for C, but I feel great. tons of energy, gained weight, look good, and have found lots that I can eat.

I have no idea if I ever had crohns, but I certainly had the positive diagnosis. whatever happened, i am so grateful to have found a diet that has given me my health back.

I still love being here, adding my two cents, and checking in with you all. big hug, YP

Posted 7/22/2008 3:01 PM (GMT 0)
I'm so glad you finally found something that works for you. It was such a long time coming. I love hearing the positive stories.
Posted 7/22/2008 3:05 PM (GMT 0)

Hey girl:

I am so glad that you are doing so well! 

It gives me hope for my guy.  He is flaring big time right now and hasn't eaten in 11 days.  I talked to him on Saturday and he is going to take some time off and have TPN at home.  I think I have convinced him to try the Entocort to get this flare under control.  I think I have finally dented his brain and he realizes that businesses can be replaced but he cannot.

Have a wonderful summer!!! :-)

klsygal

Posted 7/22/2008 7:52 PM (GMT 0)
Good to hear. I just started a gluten-free diet. How long did it take to feel better? Do you find it hard to do find gulten-free foods?
Posted 7/22/2008 9:04 PM (GMT 0)
I felt better after 3 weeks and great after a couple months. I had to learn about what to eat but now find it easy. I eat salads (once my guts healed) fish, meat, veggies, potatoes, yogurt, corn tortillas, rice, fruits. restaurants took the most figuring out, but I have found ones that work out well. mexican food is good, as long as it is corn tortillas, and if a place has lots of sandwiches, I just have a sandwich without the bread. kinda weird, but it works. I love cereal, but buy gluten-free cereals which are rice-based.
mostly I feel so good, I don't miss breads.
Posted 7/22/2008 9:29 PM (GMT 0)
Glad to hear that you found a way out. It sort of confirms my suspicions about diet. When you went off gluten, you may have reduced your carb and fiber intake to a level below what was needed to sustain your bacterial inflammation. For your info, a study was done on Crohn's patients who were put into remission by a parenteral diet and then exposed to potential trigger foods. The most common one to restart inflammation was wheat, followed by dairy, corn and potato. My belief is that once your diet has controlled the inflammation and healing has occurred, then foods can be introduced that were a problem before. There is always the possibility that the problem could return, but the restriction of diet to safe foods will again break the cycle of inflammation and allow remission after a period of healing.
Posted 7/23/2008 1:54 AM (GMT 0)
Hi Yogaprof! I'm so glad to hear you've found some relief. What happens if you accidently eat something with gluten? And how did you start this diet? Did you find any particular book, website, article, etc, helpful? I've wanted to try a gluten free diet, but I would miss my pasta! (I know, I know, if I was truly dedicated to my health I wouldn't be eating that much past anyway!)

Keeper--do you know who did the parenteral study?
Posted 7/23/2008 2:34 AM (GMT 0)
sweet. that is fantastic news. the energy i feel from your post reminds me of how i felt a few months into the makers diet and realizing how a tweak of the diet made a profound change in my life. i try to eat gluten free myself as much as possible. i eat minimal amounts of grain based foods, limiting them to sprouted grains first, then gluten free grains. i also believe the quality of grain makes a big difference - like eating sprouted grains or gluten free or even spelt versus foods made from white flour.

keep up the good work!
Posted 7/23/2008 2:53 AM (GMT 0)
it is so good to hear from you all! thanks for all the good wishes. Keeper, i am interested in the study you mentioned; do you have a link to it? it sure makes sense in my case.

crohnieyogi there is a good pasta called tinkyada that is made from rice and it as good as any pasta. I checked out many books from the library. my favorite cookbook is called Gluten Free Baking by Rebecca Reily (the corn muffins are fab!).

my favorite website is http://forums.glutenfree.com/
there is a great forum there that has helpful folks.

as for how I started, I just bought rice crackers, corn tortillas, gluten-free snacks, and did it! I am lucky that my husband loves to cook, so he has figured out a lot of options. Quinoa is a yummy, healthy grain we eat often. I don't think I have eaten anything with gluten, except perhaps a salad dressing or sauce that had it hidden. I was super careful at first and now it is just a habit. I could try adding in gluten, but I feel so good I don't want to.
Posted 7/23/2008 7:17 AM (GMT 0)
Yoga, I'm so glad this continues to work so well for you. You're starting to inspire me to test this theory on myself. I haven't been entertaining the thought because I have other "food issues" and thought restricting something else would make things worse, but right now, going at least 10+ times a day, it's about time to start something. And if I can stay away from the prednisone, I will. I'll have to check out some of those cookbooks tomorrow at the library...

Too bad about bread, though. I bake it and LOVE IT. I'll find a way to make tasty, gluten-free bread-like substances, though, right? Or am I deluding myself?

Congratulations, my friend!!!
Posted 7/23/2008 1:29 PM (GMT 0)
I am so happy you are doing well That is FANTASTIC news.

I too am still gluten free. I have gained my weight back and feel very healthy . I am hitting the gym 4-5 times a weeks and am seeing muscle mass developing something I loss due to not absorbing my foods when I was eating gluten.
A few weeks ago I was at a friends house for dinner and she made pasta and nothing else I had to eat cause I was so hungry man did I feel sick as a dog my tummy bloated out like I was 4 months pregnant and I had an over all ill feeling. I tested negative for Celiac so like you I believe I am Gluten Intolerant.

I miss eating bread but not enough to fall off the wagon.

Check out this gluten free site I am told she has a great gluten free bread recipe
http://gingerlemongirl.blogspot.com/

yeah yeah yeah yeah yeah yeah
Posted 7/23/2008 4:38 PM (GMT 0)
Great news! Glad to hear a dietary change could work so well for you! I've been gluten-free for about 8 years now and would never go back to eating gluten. At the time, I did not have Crohn's, and the dietary changes made me a new man in about a week. It was amazing.

I've been kicking around the idea of seeing a homeopath lately. The Crohn's drugs just don't agree with me and often make things worse. Hmm....
Posted 7/23/2008 5:35 PM (GMT 0)
again, thanks you guys! Sarita, as for bread, I am a baker, too, but have found anything one knows about bread baking goes out the window when it comes to gluten-free baking! quick breads and cookies are easy and are pretty much as good as those with gluten, but yeast breads are just never the same, cuz gluten is what makes them good! I have tried several recipes and they are just ok. if you have a gluten-free bakery in town those are pretty good, but the packaged breads in stores give me the creeps. but, really, it is SO worth it to feel good. like miguelblanco said, I wouldn't go back.
sugarmarie, thanks for the website; it looks really good. you mentioned muscles and the gym. I have gained my muscles back, too and look and feel fabulous.
Posted 7/23/2008 5:56 PM (GMT 0)
I have been gluten free for about 6 weeks. I noticed pretty quickly that eliminating gluten took away about 75% of my gas and bloating. I went to a naturopath and he has also taken me off of dairy, corn, soy, sugar and potatoes for three weeks. This has also helped. I'm not sure what he has planned after the three weeks.
Posted 7/23/2008 9:14 PM (GMT 0)
Hi yogaprof I am normally on the UC board but nanners told me to check out your thread. My son is 2 and diagnosed in Apr with UC his flare ups are not under control right now he's only on Probiotics due to the Canasa didn't work and whenput on Sulfasalyzine he had a terrble reaction. Dr wants to give him a break but he started with another flare up last night. He was biopsyed in Apr for Gluten it came back neg but I've been reading so much on people going on gluten free even though they didn't have Celiac and it helping with symptoms, I was curious to hear from someone personally if it works, I'm desperate for something. He's also Lactose intolerant any info you can give would be great.

Posted 7/23/2008 9:26 PM (GMT 0)
Hi rocal, glad you are visiting our board! all I can say is, it has worked, no doubt about it. I think there is no reason to not try it. there are lots of folks who have trouble with gluten and feel better without it, so why not?
so sorry your baby is sick. my heart always goes out to the moms on this board. take care, yp
Posted 7/23/2008 9:47 PM (GMT 0)
rocal- Just thinking....If your son was ever on antibiotics, he could also have a fungal problem/yeast overgrowth. Maybe he could try a version of the candida diet, under your doctor's supervision, of course.  For me, my UC symptoms had a fungal etiology. I was tested for everything, but was never indicated to have a fungal problem. It was only by experimenting with an antifungal diet that I discovered the cause of my misery, on my own. My symptoms went away and have been med free since. I still try to limit my grains, sugar, and especially yeast foods, as they are the main fungus/yeast feeders. Gluten-free sounds like the thing to try, as well. Best to your little one..........

Posted 7/23/2008 10:31 PM (GMT 0)
Thanks who would've thought of fungal/yeast? Not me obviously. I'll talk to his Dr about it.
Posted 7/24/2008 7:08 AM (GMT 0)
about the reference to the re-introduction of trigger foods after remission - it came from a book by Jini Patel Thompson called "listen to your gut" and her reference is to "Diet in the Management of Crohn's Disease" Workman, EM; Jones, AJ; Hunter, JG published in Human Nutrition 1984:38A:469-473. There are similar non-journal references on the web, usually including more trigger foods.

For rocal - the kind of diet that will fit the yeast/fungal treatment diet will also remove most of the excess fermentable starch from the diet. If you are already restricting fiber, you will deprive the gut bacteria of an excess of food. This will prevent the localized immune suppression that comes from overfeeding your gut bacteria. My theory about diet is that the normal gut bacteria are responsible for the problem when you oversupply them with undigested food. This can come from too much carbs and fiber in the diet or an insufficient digestive system that passes undigested food into the gut. Some foods seem to stress the digestive ability of your system, either through enzyme depletion due to continual eating of those foods or illness. There are also a bunch of food additives that are a part of the problem - the vegetable gums and sea weed extracts in particular look like trouble to me.
Posted 7/25/2008 12:19 PM (GMT 0)
Hi yogaprof! I am so glad you are doing so well!

I ran across this article (which is actually a transcript of a talk given to a celiac support group by an MD) and thought of you. It's kinda lengthy, but if you have never seen it, I think you might find it interesting. Among other things, it talks about a fecal test used to diagnose gluten intolerance....Isn't that what your naturopath did?

This doctor states, "However, from my published research, despite the presence of the celiac HLA-DQ2 gene in 64% of patients with microscopic colitis, very few get positive blood tests or biopsies consistent with celiac disease."

Here is the link! (sorry, I don't know how to hyper-link!)

http://www.celiac.com/articles/759/1/Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD/Page1.html
Posted 7/25/2008 3:06 PM (GMT 0)
thanks emom. that article really rings true for me. it is the idea that one can have problems with gluten without the serious damage seen when one has celiac. yes, I had a fecal test and a saliva test.
the thing that would make me nuts if I allowed it, is now all my docs have said "oh, you never tried going of gluten when you were sick? I thought I recommended that!" I was willing to try anything and none mentioned gluten-free. now I am telling them all "if you have someone who isn't getting better, tell them give it a month with no gluten just to see." it seems those with gut issues often have trouble with gluten.
Posted 7/29/2008 5:13 AM (GMT 0)
Before I was diagnosed, I had convinced myself that I was ill because of celiac sprue due to several relatives with the disorder; after a week on a gluten-free celiac diet, I felt markedly better. about 4-5 months later, I went to see a GI, got 'scoped and biopsied, and identified as having Crohn's disease. I went back to eating bread for a week and I had PAIN and BLEEDING- the worst I'd ever had. Within three days of going back to the GF diet, I felt better. A week later, I started the Specific Carbohydrate Diet.

I feel that the key isn't the gluten; the key is the complex carbohydrates. Maybe it's the gluten for yogaprof, anyway, but I know I don't do well on complex carbs from rice or other GF products. That really stumped me when I thought I had celiac disease, but my symptoms were only 80% better.

Now, a little more than 7 months after starting the SCD, I am off all my meds. On a daily basis, I have no pain; aside from two small episodes, the bleeding stopped in February. I have identified the dietary components that led to the bleeding, and eliminated them from my diet. Weekend before last, I went on a caving trip that would have killed most people- an 11-hour drive each way, followed by a technical rope entry, two days of heavy digging, and a technical vertical climb back out- with not so much as a tiny bit of discomfort. All my food was packed on dry ice, and I informed my caving buddies that I was not being a jerk if I said "no thanks" to any food I was offered.

I sincerely think this disorder- at least my "type" of Crohn's- is caused by mycobacteria, possibly in conjunction with other intestinal flora that have gotten out of whack from too many complex carbs. By removing the oligosaccharides (starch, etc.) and consuming lots of SCD-legal yogurt, I can slowly get back to normal.

It's good to hear of the success yogaprof has had in their search!
Posted 7/29/2008 5:46 AM (GMT 0)
Osprey101 - I was reading recently that gluten impairs the digestion of the associated carbs. This would explain why gluten works the same as eating lots of carbs. It also makes more sense of an experimental study that showed that the amount of gluten fed to mice determined how much their immune response was impaired. The authors were working on the antigen idea, but if that were responsible, why would it be dependent on the amount fed? If it is due to immune suppression from byproducts of bacterial fermentation of excess carbs, then the amount fed would increase immune suppression with the amount of carbs that were not being digested due to gluten. It is interesting that the feeding of gluten is known to impair the immune response in mice as well. Google "Nutrient Modulation of the Immune Response" if you want some help going to sleep.
Posted 7/29/2008 7:32 AM (GMT 0)
hey all...I was talking to my doc recently and now along with all the other possibilites of what could be wrong with me they brought up celiac. my long journey of tests for crohns and all that starts Thurs so we'll see what happens. before the doc mentioned anything about celiac a lot of people here on the forum brought it up to me because of all my symptoms...D, rash, mouth sores, stomach cramping, etc. plus I have hashimotos...an autoimmune disease that attacks your thyroid which I recently read is sometimes associated with celiac. so I have three questions for all you gluten free people...

were you diagnosed with celiac or just chose a gluten free diet...can you be allergic to gluten and not have it be celiac?

is a gluten free diet expensive? I'm on disability with a very fixed income. how easy is it to find gluten free food at a regular grocery store? I found a gluten free food store online, but it's really expensive plus the shipping costs.

I guess that's more than three...oh well. glad to hear the gluten free way of life has helped so many of you...gives me hope!
Posted 7/29/2008 2:09 PM (GMT 0)

Osprey101 said...


Now, a little more than 7 months after starting the SCD, I am off all my meds. On a daily basis, I have no pain; aside from two small episodes, the bleeding stopped in February. I have identified the dietary components that led to the bleeding, and eliminated them from my diet. Weekend before last, I went on a caving trip that would have killed most people- an 11-hour drive each way, followed by a technical rope entry, two days of heavy digging, and a technical vertical climb back out- with not so much as a tiny bit of discomfort. All my food was packed on dry ice, and I informed my caving buddies that I was not being a jerk if I said "no thanks" to any food I was offered.

I sincerely think this disorder- at least my "type" of Crohn's- is caused by mycobacteria, possibly in conjunction with other intestinal flora that have gotten out of whack from too many complex carbs. By removing the oligosaccharides (starch, etc.) and consuming lots of SCD-legal yogurt, I can slowly get back to normal.

Osprey, this is soooo great!!! I'm so glad you are doing so well!

My son is leaving on a youth group canoe trip next week for 3 days. I was thinking about dry ice....Good one!!! :-)

And your last paragraph about your "type" of Crohn's.... I feel this is the case for my son, as well. Thanks!

Closure, just remember if you decide to test for Celiac through your regular doc, your answer may come up negative. Please read the article I posted previously in this thread. My son was negative on both the blood test and the intestinal biopsy, but I believe if tested in the manner that yogaprof's naturopath does, he would show sensitivity. We will never know for certain because he now consumes virtually no gluten. He is also symptom free. :-)

Keeper, I'm going to google "nutrient modulation of the immune response" before bed tonight....
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