I'm new with questions

TooManyHats · Post by **TooManyHats** » Fri Jan 14, 2011 9:37 pm

Hi and thank you in advance for reading this. I had an endoscopy and colonoscopy done after 3 straight months of persistent diarrhea. I also had a celiac panel done. Here are the results of my tests. I'm more confused than ever.

The biopsy from the 2nd portion of the duodenum was negative, "duodenal mucosa showing normal villous architecture. No evidence of cryptitis or dysplasia."

Stomach body biopsy: Gastric mucosa showing mild reactive gastropathy. No evidence of intestinal metaplasia. Giemsa stain is negative for Heliobacter pylori like organisms.

Colon-Ascending biopsy: Focal, mild acute (active) colitis. No evidence of dysplasia.
Colon-transverse biopsy: Focal, mild acute (active) colitis. No evidence of dysplasia.
Colon-Rectum biopsy: Focal, mild acute (active)colitis. No evidence of dysplasia.

Iron % SAT 37 (normal 20-55%)
Anti-Endomysial <1:10 (normal <1:10)
TIBC 270 (normal 228-428)
Gliadin IGG, ABS <20 (normal <20)
Gliadin IgA, ABS <20 (normal <20)

Ranges for Gliadin and Transglutaminase Antibodies
IgA/IgA (Units) Interpretation
<20 Negative

ASSAY Information: Method ELISA (INOVA QUANT Lite)
New ranges effective 8/23/10

I have no idea what to make of this. I'm told I have colitis and the doctor wants to put me on Lialda, two 1.2 mg tabs x once per day. No mention of what the cause is. No mention of whether this is ulcerative colitis, lymphocytic colitis or collagenous colitis. In fact she told me that very often they don't know what causes this. I just don't understand and don't relish the thought of being on this medication for at least six months, which is what she told me. Has anyone else had results like this?

JLH · Post by **JLH** » Fri Jan 14, 2011 10:30 pm

All I was told was that I had LC. I was given the choice of Lialda or Entocort. I asked the GI doc if I could have over the weekend to decide. Long story short, I found the Potty People and went gluten free right away. Felt much better and the D stopped. In a month or two, the D started again and I suspected and eliminated soy because of the experience of the PP. www.enterolab.com confirmed my suspicions.

I never did go on meds but reached remission by diet alone. It was very sloooow but I did it with the help of Tex , Dr. Polly and the PP.

MBombardier · Post by **MBombardier** » Fri Jan 14, 2011 11:11 pm

Welcome to our internet family! There are lots of knowledge and wisdom here, and hopefully you will find some answers. Like Joan, going gluten-free, and then going on a low-residue (low fiber) has enabled me to avoid medication. But we are all different, and we all have to figure out what works best for us as individuals.

Welcome again!

TooManyHats · Post by **TooManyHats** » Sat Jan 15, 2011 12:07 am

I have to say I'm confused. Although I know there are false negatives with the Celiac testing, my doctor said I wouldn't have to go gluten free because it's not celiac--it's colitis. I have read about the association between gluten intolerance in patients diagnosed with MC. If I decide to try it, how concerned about cross contamination would I have to be? My family (my husband and 3 sons) aren't interested in going gluten free, which of course would make it very tough. How concerned are you when going out for dinner? Again, are there all those cross contamination issues? Is this a case similar to celiac where even the most minute amount sets off the symptoms again? I find the gluten free diet very isolating and limiting. I've already done all the throwing out of tupperware containers, colanders, and non-stick cookware. I'm just wondering if I could share a kitchen with 4 messy males and still be gluten free.

Foxnhound8 · Post by **Foxnhound8** » Sat Jan 15, 2011 6:54 am

I'm right there with you. Hubby's a hunter (venison,elk, moose), older daughter a vegetarian and younger daughter a junk food kind of gal. I sent a sample in to Enterolab and am waiting to find out what they say my sensitivities are before I embark on a plan. In the mean time, it's pretty much chicken and rice for me, otherwise I tip right back over into "D"!

foxnhound

ant · Post by **ant** » Sat Jan 15, 2011 9:43 am

Dear Toomanyhats

Welcome to the MC family. I am wondering if your GI doc tested you for MC. He would have taken several biopsies from your colon and had the lab examine them under a microscope. That is the only way MC is diagnosed.

There is a strong link between Celiac and MC. IMHO it is possible that many cases of refractory celiac are due to such people also having diagnosed or undiagnosed MC. (I wish there was some research or data on this.). The reason I say this is that MC is often harder to treat then Celiac with more food intolerances than just gluten.

Anyway if you have MC it is likely you will need to remove all gluten from your diet and possible dairy and soy.

Best of luck in your journey to finding remission, Ant

TooManyHats · Post by **TooManyHats** » Sat Jan 15, 2011 9:54 am

ant wrote:Dear Toomanyhats

Welcome to the MC family. I am wondering if your GI doc tested you for MC. He would have taken several biopsies from your colon and had the lab examine them under a microscope. That is the only way MC is diagnosed.

There is a strong link between Celiac and MC. IMHO it is possible that many cases of refractory celiac are due to such people also having diagnosed or undiagnosed MC. (I wish there was some research or data on this.). The reason I say this is that MC is often harder to treat then Celiac with more food intolerances than just gluten.

Anyway if you have MC it is likely you will need to remove all gluten from your diet and possible dairy and soy.

Best of luck in your journey to finding remission, Ant

Thank you for replying. My doctor did do an endoscopy with 3 samples from the colon from different sections.

Colon-Ascending biopsy: Focal, mild acute (active) colitis. No evidence of dysplasia.
Colon-transverse biopsy: Focal, mild acute (active) colitis. No evidence of dysplasia.
Colon-Rectum biopsy: Focal, mild acute (active)colitis. No evidence of dysplasia.

I haven't been able to eat dairy in years, although I usually do use regular butter instead of margarine. In the couple of weeks since I've been trying the gluten free diet it's already apparent that soy causes a problem.

My questions are really about the cross contamination issues that plague the celiac community. Do I need to be so concerned that I can't go out for dinner because of the fear of cross contamination? Does just a minute amount set off full blown symptoms again?

Post by **tex** » Sat Jan 15, 2011 11:22 am

Hi TMH,

Welcome to our internet family. Your biopsy results show that you do not officially have celiac disease, but you do have lymphocytic colitis, (LC). You do not have UC or Crohn's.

The classic diagnostic criteria for celiac disease will only diagnose fully-developed celiac disease. While anti-gliadin IgA stool tests will detect gluten-sensitivity as soon as it develops, it takes years before the antibody levels in the blood will rise to a level where they will trigger a positive test result. Except for the few of us who also have fully developed celiac disease, we always test negative for the celiac tests, even though we are just as sensitive to gluten as the average celiac, and in some cases, even more sensitive than the average celiac. If you know that you are sensitive to dairy and soy, then you are almost certainly also gluten-sensitive - the odds are extremely high. You may also have other food sensitivities, such as corn, yeast, eggs, etc., but the big three are gluten, dairy and soy, and those should be concentrated on first.

As I've already mentioned, yes, even trace amounts of gluten can cause a reaction for many/most of us, especially if there are trace amounts in your diet on a regular basis. The intestines cannot heal with regular contamination, and it usually takes years for the gut to heal, with a rigorous diet in place - if the diet is compromised on a regular schedule, healing may never be completed. You can reach remission before the gut completely heals, of course, but until the healing is completed, the intestines cannot tolerate significant amounts of fiber, and significant amounts of sugar, etc. Once healing is completed, then you can usually add most foods back into your diet, (except for the foods that cause an autoimmune reaction for you, such as gluten, dairy, and soy).

Most of us are not only sensitive to lactose, but also the casein, (the primary protein in milk), in all dairy products. Therefore, if you are casein-sensitive, then the butter will be a problem. It's certainly possible, though, that you may not be casein-sensitive. Anyone with enteritis will automatically be lactose intolerant, so that's a given, but lactose intolerance does not cause inflammation - it simply causes poor digestion, gas, and bloating, as the lactose is fermented in the colon.

Eating out is full of landmines. If you absolutely have to eat out, try to pick a restaurant that not only has a GF menu, but where the staff actually knows how to deal with multiple food sensitivities, (not just gluten), and they know how to avoid cross-contamination, because otherwise, you will find that you are constantly getting sick from lactose, casein, soy, etc., and even accidental traces of gluten, in your restaurant meals.

TooManyHats wrote:Does just a minute amount set off full blown symptoms again?

It usually will, early on in your recovery, because your intestines are so hypersensitive. As the healing proceeds, though, small amounts may cause only limited symptoms, or a very short, (half a day or so), reaction. The more your gut heals, the less serious the reactions will be.

Again, welcome aboard, and please feel free to ask anything.

Tex

MBombardier · Post by **MBombardier** » Sat Jan 15, 2011 12:59 pm

Dear TooManyHats :bigbighug:

I just thought you sounded like you need one!

Yes, you can successfully share a kitchen with four messy males. Aluminum foil will become your fast friend for grilling or using a toaster oven. Also, once you find a good mayo with no soy or make your own (look in Dee's Kitchen or online) you can put it in a squeeze bottle. This is how I eliminated cross-contamination from my children scraping the excess off the knife back in the mayo bottle. There are other strategies that I'm sure will occur to you. You can do it!!

BTW--you just helped me out. I am flaring a little this week, off and on. (At almost four months into this, my flares last less than a day. I am thankful.) I just realized that I have been storing my hamburgers in the freezer in a Tupperware container. Bingo.

As far as eating out is concerned, it is easier than you think. I don't know where you live, but here in the greater Portland (OR) metro area, plugging in "gluten-free restaurants" brings up several websites with huge lists. Also, there are nationwide restaurants that feature gluten-free menus like Olive Garden, The Old Spaghetti Factory, Red Robin, PF Chang (the owner is celiac), now Subway, and no doubt others. I even ate gluten-free at Panera Bread the other day. I did what the author of Living Gluten-Free for Dummies--excellent book--said to do, and that was told the people behind the counter that I have a serious reaction to gluten. They pulled out a gluten-free list of foods and told me exactly what I could eat.

Also, once you share with people that you are going gluten-free, you will be amazed at how many other people are also gluten-free, people you would never suspect. In fact, there are so many people going gluten-free (and dairy-free, soy-free, etc.) at my church that we now have a separate table for safe foods every Sunday at our shared meal.

Truly, once you really buy into going gluten-free you will be amazed at the variety of foods that are still available, and if you enjoy cooking at all, you will be amazed at the delicious food you will be able to make that you may not have even considered before going gluten-free. As I said, I am only four months further down the road than you on this journey, and this is what I am discovering.

Also, I have discovered that the benefits of going gluten-free are more than just being able to live without a bathroom immediately handy. I no longer have brain fog, and that is a wonderment every day. I sleep all night, or if I wake, I go right back to sleep. My joints rarely hurt any more. I had the blood tests for celiac right after my colonoscopy and they were negative. But when I went to my GI this week and told him how I was benefiting from going gluten-free, he diagnosed me with non-celiac gluten intolerance.

I don't know if this is helpful or too much information. I just want to encourage you that going gluten-free, soy-free, etc., doesn't have to be isolating or limiting. It can, in fact, be an adventure that brings satisfaction and fulfillment when you discover that you really can live well, even better than you have been living. Sure, there will be grief that you can no longer eat some of your favorite foods, and sometimes you will mess up (even without knowing) and have to live in the bathroom for a while. But all in all, little successes will build to bigger ones, and the compassionate people on this forum who have "been there and done that" will be cheering you on all the way.

JLH · Post by **JLH** » Sat Jan 15, 2011 6:01 pm

I use computer address labels to tag my food such as peanut butter, jelly etc. that might get cross contaminated. (DH's great idea.)

I use Hellman's soy free canola mayo and Earth Balance soy free margarine (thanks Dee.)

I worry about going out to eat but I've been pretty lucky with my Ruby Tuesday's here. Of course, I eat chicken (cooked in 100% olive oil from their salad bar not what they usually cook in which has soybean oil) baked potato and well cooked broccoli almost every time.

I take my own margarine.
I try to get the same waitress each time.

TooManyHats · Post by **TooManyHats** » Sat Jan 15, 2011 9:50 pm

I got that Hellman's mayo you mentioned and tonight picked up the soy free margarine. I even found a gluten, soy, and dairy free cream cheese in Brooklyn NY. OK, an hour from me, but I REALLY only need it once a year or so for recipes I make.

Linda in BC · Post by **Linda in BC** » Sun Jan 16, 2011 11:09 am

Dear too Many Hats;

Welcome!

I found out about 8 years ago that I am highly casein intolerant, but I can use butter too. Everyone is slightly different and many people cannot get away with even a little bit but maybe you are like me and can . My theory on why I can eat butter is that butter is mostly fat with a small amount of whey and milk solids ( casein/milk protein.) It's the milk solids that contain the casein (protein), not the fat.

Some people use ghee which is also called clarified butter, ie butter with all the milk solids removed. You can buy it or make it yourself by melting butter and skimming ALL the white stuff out of it. The ghee should be somewhat clear and yellow, with no white.

Linda

TooManyHats · Post by **TooManyHats** » Sun Jan 16, 2011 11:47 am

Ahhh, I wondered what ghee was. I'm assuming that it's not something I can buy at my local grocery store?

Post by **tex** » Sun Jan 16, 2011 1:36 pm

I'm not sure about any grocery stores, but you can find ghee at health food stores, usually refrigerated, (though it doesn't have to be refrigerated - it will keep for an extended period at room temp, provided it is kept sealed from the air, and free of moisture).

It's an old Ayurvedic, (from India), product, so grocery stores that feature ethnic food sections, or gourmet sections, would probably have it. Many gourmet chefs use it.

Tex

Gloria · Post by **Gloria** » Mon Jan 17, 2011 8:25 am

Here's a link to making ghee, and most importantly, straining it:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10338

Gloria