Making an elimination diet work with roommates

[sally1]

Hello fellow MC-ers!

After struggling for many years with what my doctors insisted was IBS, I was finally diagnosed with Lympocytic Colitis a little less than a year ago. My GI was "VERY surprised" that the test came back positive, and put me on the pepto treatment for 8 weeks. It helped a lot during the treatment, but I immediately relapsed after discontinuing. My GI is very adamant that diet changes will not help control MC-related inflammation, and has completely ignored my multiple requests for a referral to a dietitian or nutritionist that specializes in IBD. I haven't told my GI about the relapse, and I'm assuming he thinks I'm better now. I just don't think he can help me, and will continue to push for drugs as a primary treatment, which is very frustrating.

I was on a gluten and dairy free diet before my diagnosis, because they were very obvious trigger foods for me. I have maintained that diet, but am still very much symptomatic. I had all but given up on treating this because I have been so angry and discouraged by my doctors' very obvious lack of knowledge about MC. I felt hopeless and sure that I would just have to deal with being sick everyday for the rest of my life.

I am SO GLAD that I found this forum last week, and I am just finishing up Tex's book. I am amazed by all of the great information, and so glad to have validation that what I have been experiencing for so long is actually a very serious condition. It is crazy that there is such limited information about MC online, and it seems that every source and scientific study belittles it as a 'less severe' version of UC or Crohn's or Celiac, and claims that the symptoms are just annoying, not life altering. Made me feel really bad for a long time.

Anyways, I am so glad I found this community, and am finally feeling hope that dietary changes can bring remission for me. I am getting organized and ready to kick off an elimination diet to figure out my food sensitivities once and for all.

My primary issue is that I live with two roommates, who are fantastic roommates and friends, but who have never been very supportive or understanding of my MC. One of them thinks that I am dairy free only because it reduces acne. Which is not true, and I've explained it to her multiple times. She continues to say that loudly and always in front of people and it makes me SO MAD that I have to defend myself and my condition to her. She also pretty regularly says that I should take a cheat day or two and eat cheese and bread, etc. and just "deal with the acne." It just frustrates me so much and, despite explaining it to them many times, they clearly still think my condition is a joke and that I avoid gluten/dairy it because I think it's cool or I'm trying to be difficult.

I am really excited about the elimination diet, and about the possibility of remission after all of these years. But I am unsure how to get my roommates to understand how serious this is. This is especially important since Tex's book made it clear that, in order to be successful, I need to become much more intense about avoiding gluten through cross-contamination, etc.

Since my roommates and I have a shared kitchen, and neither of them have any dietary restrictions, I am unsure how to implement a strict elimination diet, with no traces of gluten, without them seeing it as an undue burden on them. And, I am afraid that they will not believe that it is medically necessary, and will be sloppy about helping me maintain a gluten-free area, and utensils/cookware.

Any advice on the best way to handle this would be VERY much appreciated. I'm finally seeing a faint light at the end of the tunnel, and just want my gluten sensitivity to be taken as seriously as it is for people with Celiac.

PS - it is so inspiring to read about people's experiences recovering from MC and achieving long-term remission. I really hope I can get there someday. Thank each of you so much for sharing your stories on here. Can't tell you how much it has helped.

[brandy]

Hi Shereford,

Welcome to the forum!

Re: What people say.....I ended up having to toughen up and ignore a lot of what people say but it still hurts.

Do you all cook your own individual meals? Or do joint meals?

The safest way is to have a large rubbermaid tote and keep your frying pan and sauce pan in it. Make large
batches of food that you can freeze and then reheat for yourself. Paper plates are probably safest in
a communal kitchen. You might stick to paper and they with dishes etc. Or have your own dishes. The less comingling of pots and pans, wooden spoons etc the better. If you have a dishwasher make a habit of using it all the time. Replace sponge at least once a week. Wash dish towels frequently etc. If you use communal roaster pans or cookie sheets layer with
foil before making your foods.

I see you are 26. A lot of young people are on faddish GF diets. No one gets the seriousness of what we have.

I would not explain a whole lot...I would just start implementing what you need to do to stay safe.

Leave Tex's book lying around....maybe as bathroom reading. Maybe they will read a bit of it and you will get support.

I learned about cross contamination when I cooked a meal at Mom's house. Mom is celiac. Dad eats everything under the sun.
I cooked steak, potato and green beans.....a very safe meal but there was some gluten contamination somewhere as
I had a gluten reaction the next morning. Something was contaminated in my cooking process at Mom's even
though I cooked a GF safe meal.

You are at the right place!

[tex]

Hi,

Welcome to the forum. I'm impressed that you figured out the gluten connection right off the bat, even your doctor is apparently too dense to see it. That knowledge should pay many dividends in the long term. You appear to have a good treatment plan. Your biggest current obstacle (in my opinion) is your roommates. Home cooking in many cases is the key to recovery, but only if it's safe.

Brandy has some great tips. It's a shame that you can't be rooming with someone with similar needs — someone who might appreciate the seriousness of being strict with your diet, such as celiacs. If you can convince your roommates that you're a celiac, that would probably help a lot. Most people don't recognize microscopic colitis, but they've heard of celiac disease. I'm never bashful about informing skeptics (or anyone else, including doctors) that I'm a celiac. It simplifies things a lot. And the truth is, we're at least as sensitive to gluten as the average celiac.

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

Tex

[Marcia K]

Hello. I keep all my pans, measuring cups, etc. separate from the rest of the household. I am the only one who is gf and that's the only way to be safe. I also have my own crockpot. I don't ask my husband and son to eat like I do, but I do ask them to be careful when they have bread, etc. so they're not contaminating the kitchen surfaces. I haven't had gluten or dairy for 5 years and being in remission is well worth it!

[JFR]

Unfortunately often you simply can't get people to take you seriously. They will believe what they are going to believe. I had a friend once who never got why I wouldn't do things with her, go places with her. It was because I was sick but since I had once been very depressed she constantly thought I was saying "no" because I was depressed so she would keep insisting that I needed to just get out and do things. It's hard to just get out and do things when you need to stay very close to the bathroom but somehow I could never get through to her. You really just have to let go of the expectation that anyone else will understand and figure out how best to go about it on your own. That said you are in a tough situation since you share a kitchen with two other people. Brandy has some good suggestions. Stay firm in your knowledge that you are heading in the right direction and keep doing what you need to do to get well whether or not your roommates can get on board.

Jean

[brandy]

Agree with Tex that saying you are celiac might be helpful.

Stay firm in your knowledge that you are heading in the right direction and keep doing what you need to do to get well whether or not your roommates can get on board.

[sally1]

Wow, I can't thank you all enough for your responses. SO helpful! I will definitely be getting my own cookware, utensils, etc. and will keep them safe in a plastic bin to avoid cross-contamination issues. Luckily, my roommates don't do a ton of baking, so we usually don't have wheat flour in the house (which I understand from Tex's book is a major cross-contamination concern).

I agree that I need to not let what people think get to me. It can be really hard sometimes, and, before I realized the seriousness of MC myself, I let people's dismissal convince me that I am not really that sick and that's just life. Really glad to be on the other side of that, and am very confident that I am moving in the right direction to get myself well.

A few other quick questions:

1. From Tex's book, it seems like cross-contamination of gluten is the primary concern. Is cross-contamination from dairy/soy/yeast/eggs, etc. less of a concern? If yes, is there a reason for that?

2. My boyfriend is super supportive, and he is excited about my elimination diet. He even offered to do it with me (I said no way, he needs to have a balanced diet, but I appreciated the gesture very much). He asked me if cross-contamination would be an issue if he kisses me after eating a piece of bread or some cheese or something. Should he rinse his mouth out or brush his teeth after eating foods I'm sensitive to just to be safe?

3. Do doctors offer vitamin shots? My MC has been active since I can remember, so I think I am seriously hurting for Vitamin D-12, but am afraid to go with supplements because of potentially risky ingredients. Let me know if anyone has explored or uses this option for vitamin deficiencies.

4. Are any of you able to tolerate alcohol (gluten-free, of course) in remission?

I'm sure I'll come up with more questions as I continue down this journey to recovery. Really can't thank you all enough for your help!

Thank you,
Sally

[tex]

1. From Tex's book, it seems like cross-contamination of gluten is the primary concern. Is cross-contamination from dairy/soy/yeast/eggs, etc. less of a concern? If yes, is there a reason for that?

The half-life of anti-gliadin (anti-gluten) IgA antibodies is about 120 days. The half-life of antibodies associated with most other foods is 5 or 6 days. Therefore gluten is capable of doing major long-term damage to the intestines. By comparison, the damage caused by other foods is relatively minor, short-term damage. We will still react, but the accumulated damage to our intestines will be much less significant.

2. My boyfriend is super supportive, and he is excited about my elimination diet. He even offered to do it with me (I said no way, he needs to have a balanced diet, but I appreciated the gesture very much). He asked me if cross-contamination would be an issue if he kisses me after eating a piece of bread or some cheese or something. Should he rinse his mouth out or brush his teeth after eating foods I'm sensitive to just to be safe?

Yes, kissing can be a problem if any traces of food residue are transferred. Consider this quote from a post made more than 13 years ago:

Personal Experiences:
Of the people that I know with gluten intolerance, I am one of the most sensitive, Lucky me! There is a soup that I can enjoy at my favorite Japanese restaurant. While eating it one time I discovered a quarter inch piece of wheat noodle that had fallen into it. I removed the noodle and finished the soup. Six hours later, I had diarrhea and vomiting, which is my normal reaction to gluten. I have also reacted to licking an envelope and my husband’s soap, which somehow got into my mouth.

From:

Jean's List of Gluten Products/Additives

3. Do doctors offer vitamin shots? My MC has been active since I can remember, so I think I am seriously hurting for Vitamin D-12, but am afraid to go with supplements because of potentially risky ingredients. Let me know if anyone has explored or uses this option for vitamin deficiencies.

There's a company that offers transdermal patches for supplementing vitamins. Here's a post that mentions it, and I believe several members are finding these to work well, despite being somewhat pricey:

https://perskyfarms.com/phpBB2/viewtopi ... in+patches

4. Are any of you able to tolerate alcohol (gluten-free, of course) in remission?

Surely. It's best kept in moderation because alcohol is a major cause of increased intestinal permeability (leaky gut), but drinking in moderation is fine (unless you happen to be extremely sensitive to the effects of alcohol).

Tex

[sally1]

Thanks, Tex!

Last question: is there a brand of toothpaste that is safe? I can't seem to find any that don't have either artificial sweeteners, gluten, or both.

[tex]

I'm not aware of one. Maybe someone else can recommend some options.

A year or so before my MC reactions began, my previously healthy teeth suddenly tried to accumulate as many cavities as possible. Dental work didn't stop it. After I cut gluten out of my diet, and my gut healed, the generation of new cavities and the progression of old cavities (miraculously) stopped. I couldn't find a decent toothpaste, so I've just flossed after every meal for the last dozen+ years, and I've had no more dental deterioration.

It's pretty clear to me that gluten is the primary (maybe the only) cause of tooth decay. Published research reveals that gluten destroys the enamel on our teeth and promotes decay. Dentists can identify a celiac just by looking at their teeth (if they're aware of the connection). Note that our paleolithic ancestors may have had a tooth or two knocked out sometimes, but they had no tooth decay problems. The fossil records indicate that dental problems (tooth decay) began during the neolithic period of history as wheat farming became popular (roughly 10,000 years ago).

Tex

[Gabes-Apg]

Welcome!!

Toothpaste, check out range on IHerb.
Or make your own with bicarbonate and coconut oil. (Google search will provide recipes).

[JFR]

I make my own toothpaste. I use this recipe but omit the stevia:

https://thecoconutmama.com/coconut-oil-tooth-scrub/

Jean

[sally1]

Thanks for the toothpaste recommendations! I'll definitely have to try making my own.

I also have had a bunch of unexplained cavities this year (despite having really good oral hygiene). I was so confused by this and thought it for sure had something to do with my GI problems, but my doctor and dentist dismissed that possibility pretty much immediately. When I read in Tex's book that untreated gluten sensitivity causes tooth decay I was so excited because I KNEW IT. Can't wait to have my teeth stop decaying!!