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Wednesday, July 19, 2023

Answering questions about my health

I've received a handful of emails asking about my current health situation. I'm usually not one to divulge a lot of details about my health, but I thought I'd take a couple of minutes to  answer questions. Also, these friends were genuinely concerned for me, and/or have similar situations and wanted to compare notes, not just overly curious.

What's my diagnosis?

A little over 30 years ago I was diagnosed with lactose intolerance, barley intolerance, oat intolerance and IBS-D. I also have life long allergies to tree nuts (except almonds and macadamias) and bivalve shellfish. I've been able to manage my IBS-D over the years through diet control and have been able to quell flares within a month or two of increased dietary strictness.

Since that original diagnosis, I've discovered that I can't tolerate guar gum, xanthan gum, gellan gum, locust bean gum, cellulose gum, carrageenan and enzymes added to flour. The thickeners and emulsifiers are known to trigger flares in many folks with IBS or one of the IBDs.

What's making me sick right now?

I've been in a persistent IBS flare for 8 months, since November. I have been eliminating practically every possible thing I could think of to get this one under control. I went completely gluten and dairy-free and avoided all of the other foods I know I have problems with for 2 months and still wasn't well or on the way to being well. For the 4th of July I thought I'd come up with a menu I could eat, no bread, just sausages, corn, potatoes, vegetables, salad, fruit, dairy-free dark chocolate, a rice cake, marshmallows, and some candy that I thought would be safe to have as a treat -- jellied fruit slices and gummi candy. I read every label and didn't see anything I knew I couldn't have. And then I got really sick a day later. I looked up every ingredient in every product I ate and found an ingredient in several of the foods and treats I ate that is on the list not to eat for sensitive individuals -- modified food starch or modified corn, wheat or potato starch. 

My goodness, modified starches are in so many food products. The gummi candies, the jelly candies, the sausages, marshmallows, and the mayo-like salad dressing that I ate on the 4th and 5th (the leftovers) all had modified starches. I was sick for a couple of days and didn't piece this all together until the 7th of July. 

I suspect I've been eating modified starches for a long while, not knowing they weren't for me. It was sometime last fall that I began buying a few extra treat items and packaged foods to have around the house instead of always baking and cooking from scratch. In addition, sometime in late summer/early fall I bought a large 50-lb sack of bread flour that contained enzymes. I'd been slowly doing my own self in all these months.

How am I doing now?

I have now stayed completely away from all of the foods that I now know are harmful for my system. While I'm tired and run down, I'm feeling better and my IBS symptoms are abating. I'm on a diet high in anti-inflammatory foods. The theory is that eating these foods will help in the healing process and reverse any damage done by a prolonged flare-up. I've also been able to add back in cheese aged 3 years+ (which is only one brand of Parmesan cheese in my local stores) and an organic, all-purpose white flour made with just wheat, no barley or enzymes. This flour is expensive, so I make my family bread with the other flour we have and I bake my own bread using the organic, barley-free and enzyme-free stuff.

I'm really kind of annoyed at the big food manufacturers. Modified starches and gums are in food products that are sold as healthy alternatives, not just the boxed meals or other convenience foods. I can't eat commercially-baked products, as the flours bakeries use contain the same barley/barley malt and enzymes that mainstream flour has. It's a lot of label reading to find unadulterated products. I noticed at Christmas time that even the heavy cream for whipping now contains carrageenan. (Carrageenan, by the way, is linked to UC, intestinal lesions, and colon cancer in animal testing.) These additives are, for the most part, cheap ways to improve the texture of food products. 

To those of you who reached out to me about my health, thank you. I hope that now I am on the path to being well again. And for those who indicated you are also going through similar issues, I hope you find the key to unlocking good health for your own self. Thanks again, friends.


  1. I know it was difficult for you Lili to share your health concerns, but it gives us another insight that shows how remarkable you are. You just keep moving ahead and accomplishing great things despite the fact that you are suffering. I didn't realize that some flours have additives. I will have to read my labels. It also makes sense that you don't eat out much. Besides the cost, it's not always good for your health. I hope this latest discovery about modified starches will help keep your flare-ups to a minimum.

    1. Thank you, Live and Learn. You're right, a good part of why I don't like to eat out is I'm wary of how foods may be prepared and whether I'll feel sick the next day. It just makes eating out not so appealing to me. I'm glad for all of the folks who can enjoy the pleasure of eating out. But there are many other joys I get to experience in this life that I can be grateful for.

  2. Hi Lili, I haven't commented for a long time, but I always read regularly. I, too cannot tolerate the items on your list, as well as other things. I may have had some IBS before uterine cancer, but after chemo and radiation, I became worse than ever. It is SO frustrating, but I am alive and otherwise fairly healthy, so I count my blessings, as I know you do.
    Back in the day, no ice cream or dairy contained carrageenan, and no one ever used these gums and things and we got along just fine. It's just like a lot of the pharmaceuticals nowadays - you didn't know you needed it until they sold you on it. So sad that food manufacturers have fallen prey to the money making schemes of others.
    I had to go gluten free (among other things) after I developed a rash that six different doctors of varying specialties gave me no solutions. I eat very minimal dairy and must avoid spicy and strongly flavored foods. Oh, I forgot to mention that I am highly sensitive to chemicals and fragrances, some making me literally sick. But, as the saying goes, we all have our cross to bear, so I soldier on.
    In my research over the years, I discovered, which was originally intended for childhood issues, but some of their suggestions have helped me. For example, artificial flavors and colors, certain chemicals used in manufactured foods, and even naturally occurring salicylates can affect some people.
    I hope your new discovery brings you much relief and know that you are not alone in this predicament.

    1. Hi Jo,
      Yes, being alive and fairly healthy is something to be grateful for. I'm glad the treatments worked so well for your cancer, despite what they may have done to your digestive system. I'm glad you have worked out what you can and cannot eat or be exposed to. With the fragrances, though, you're at the mercy of others. I feel for you.

      I know exactly what you mean on the ice cream! My son and daughter-in-law gave me a gift card to Coldstone Creamery and there isn't s single product (except coffee) that I can eat. They all (even the sorbet) have a gum or carrageenan as an ingredient. I'll still use the gift card for my family to buy a sundae kit to take home. I'll pick up a sorbet at the grocery store for my serving. (I hope Hagen Daz hasn't changed their recipes).

      Thank you for that link to I will read their info. Once you've read something about artificial colorings, etc, it's hard to unsee all of the places these additives are now.

    2. Jo, thanks from me, too, for the link. I will be passing this around to some other people, as well as having read parts of their website myself, already! Sara

    3. I'm glad I was helpful. Yes, thank goodness for Hagen-Dazs and may they never change their recipe!

  3. Hi, Lili. Thanks for getting into the details. I'm sure that this will be useful to a lot of people (maybe many you don't hear from.) I'm very sorry that you've had such a difficult time, especially lately.

    Along with all the helpful information you included, I thought that Jo's comment about food additives was worth doubling-down on. I've had a lot of conversations with people, especially the generation or two before me, about food; and something that a lot of us don't know, or maybe even think about, is that your traditional/tried-and-true/familiar brand commercial foods/ingredients are not the same as they were when we were younger. I can't recall what it was, but just the other day I found another ingredient or food that has added something to it that makes it cheaper for them, but problematic to me. I'm a very, very careful ingredient-list reader, by necessity, and I had missed this addition.

    It reminded me of 20 or 30 years ago, when manufacturers started adding artificial sweeteners to products which were NOT labeled as low-cal or diet. My grandmother had been eating Doublemint gum since her childhood, and couldn't figure out why suddenly it gave her all sorts of gastrointestinal problems. I explained it to her, but didn't have a solution, except more-expensive, harder-to-find chiclet-style gum, which was all cane sugar, but didn't have the taste/texture she was used to.

    A decade after that, one of the few health/convenience foods I'd been able to tolerate added soy (cheaper) to it's product, without any change in the label. I got sick several times before I re-read the label, and found the change. (I had old bottles in the recycle that had the other ingredient list.) I wrote to the company a very specific and heart-felt explanation of the loyalty I'd had to their product, the important role it had played in my diet, and the fact that the change had made it impossible for me to use it anymore. (I also did grouse about them changing without noting it on the label.) I got a "thank you for your comments" letter back... with coupons to buy more of that product. Yup, honestly.

    Anyway, I'm VERY sorry for everyone who's reading this, who is struggling along this difficult road. As Live and Learn pointed out, MANY "normal" activities are difficult, if not impossible, and I'm sure Lili and others agree with me -- there's not a day that goes by that what/where/when you eat isn't a major issue. Right now, I'm struggling with a dinner invite from one of my oldest friends who will be coming to visit my area, but doesn't have time to come to my home. I'm racking my brain trying to think if there's an entree at any of the possible restaurants that I can eat. She doesn't know anything about my health issues.

    Hang in there, everyone!!!! Sara

    1. Hi Sara,
      Yep, that happened to me with heavy cream this past fall and winter with the carrageenan. I was thrilled to have leftover heavy cream from the holidays to add to my coffee and sauces, since I can't have milk. Then I began to react to the carrageenan and I read the label at that point. There's absolutely no reason to include the carrageenan in heavy cream, unless of course the manufacturer is trying to get by with a lower fat content but still have the customer think the product is the same as before. I'm sorry you found out the hard way about a "new" ingredient to an old favorite product. And what an insult to send you coupons for more! How absolutely clueless.

      I'll tell you what I do about eating out (our family does eat out every once in a while). I make sure I'm a big voice on the choosing-restaurant team and choose a place with counter service and I bring my own food, so I don't have those awkward waiter/waitress interactions about why I'm not ordering anything but coffee, tea, or water and maybe a side salad. We have several nice-casual places that are a step up from burger places or sandwich joints where this works for me. I'll either eat at home before and just have coffee, or I'll bring a good meal for myself in a plastic container. Friends with celiac tell me they do this all of the time. How about a picnic dinner somewhere close to where your friend will be?

      I hope you can find a solution that works for you with your old friend coming to town. I'm sure you'll both be so engrossed in catching up that how or what you eat will barely be noticed.

    2. As I mentioned in the picnicking thread, I carry food with me whenever I leave the house; but I prefer to cook for other people here, or avoid visiting for mealtimes, whenever possible. I can cook a great meal here that no one knows has special diet considerations, and with careful selections, I went to 20 family dinners per year at my in-laws for 13 years without them knowing I had any food issues. Planning ahead, there ARE things I can usually tolerate at a restaurant -- but I eat a rotation diet, so the same things aren't okay every day. And unfortunately, if I have a problem, it's immediate nowadays, not hours later like it used to be. I'm considering suggesting a picnic, but it's going to be late afternoon mid-August in a hot area.

      In a society where most people are all about eating, and especially eating out, in a lot of types of social circles, it can be a pointless distraction, more pleasant to avoid, if at all possible, for me. And it makes events that are thoughtless and spontaneous for other people, an important process of consideration for some of us. Sara

    3. Wishing you luck as you figure out how to handle this recent dinner invite. 20 dinners/year without inlaws knowing your situation -- that's impressive!

  4. I hope you are well on the path to wellness. My grandmother couldn’t eat corn or anything with corn in it for this same reason and it is in a lot of products, even Zest soap. Praying for you. 🙏

    1. Thank you, Belinda. I really appreciate prayers.
      That must've been so difficult for your grandmother. You're right, corn is in so many foods and products. It must be one of the harder foods to have to avoid. That's surprising and crazy about it being in soap even.

  5. Sorry so many foods are bad for you. I thought my husband's citrus allergy was bad but yours take it to a new level. Must be fun to food shop.

    1. Thanks Cheryl. I'm sorry your hubby has to deal with a citrus allergy.
      Oh yeah, food shopping takes time. At least these days I can look up product info online while at home, so I can find what will work before I even step out the door. But for the most part, it's just easier to scratch cook from basic ingredients.

  6. That is such a tough situation- I’m sorry that is such a problem for you. I, too, have ibs issues with a few intolerances. However, the symptoms don’t seem to be to the level of yours. It’s good you have a handle on the culprits because feeling good is such a blessing. Take care of yourself!

    1. Hi Ruthie,
      Thank you.
      I'm sorry you also have IBS issues and intolerances. I hope that now I know more of what I can't have and am aware of the types of products to avoid, at least I can feel much better and like a normal person.

  7. Lili, I'm sorry you have so much to have to deal with. It's mind-boggling, all the things you have to consider. I just checked my heavy cream and yup, it has carrageenan. I never realized that before. How frustrating for you.

    My sister has a nickel allergy, which occurs naturally in many foods (soy, legumes, chocolate) and is also added to many topical items such as makeup. She has had issues with companies changing their food formulations, so what was once a "safe" product becomes problematic for her. Cooking in stainless steel is an issue, as well.

    It sounds like you have come up with some good solutions for dining with other people. Thanks for your willingness to write about this, and thanks to the other commenters who added their insights. I have learned a lot today.

    1. Thanks, Kris.

      Your sister's nickel allergy must be troublesome for her. Soy seems to be in so many foods now, too. And no chocolate. That would be a hard one to go without. I didn't realize that stainless steel, or some stainless steel, has nickel in it. It must be difficult to get info on cookware as to what materials went into the item. It's not like pots and pans come with ingredient labels.

      The carrageenan in whipping cream is very disappointing for me. The only nearby store I can find heavy cream without carrageenan or gums is Whole Foods (aka Whole Paycheck), at $7.99/12 oz. But at least I have that option when the holidays roll around.

    2. Kris and Lili -- I recently researched stainless steel cookware safety, and as Kris' sister probably knows, according to the safety websites I read, there IS some nickel/chromium which may leach out of stainless steel, especially when it's new, especially if you cook acid foods a long time in it, and especially if it is imported/cheap/thinner. My understanding is that "good" stainless cookware emits less nickel/chromium over time than it did at the start. And there's supposedly one weight/type (which I can't recall right now) which either doesn't have nickel/chromium, or doesn't leach it out. But sounds like it's expensive (laughed at your Whole Paycheck comment, too), and hard to find. Anyone interested in this subject can do an internet search for "stainless steel cookware safety", and find oodles of information. There's such a minefield of potential health issues, especially for people with sensitive bodies, that sometimes the information is a little overwhelming. Sara

    3. Hi Sara,
      You know what the irony is with stainless cookware and cooking acidic foods for prolonged periods? I always believed that stainless was the best surface for cooking acid foods, such as tomato-based foods or fruits. I have my mom's old Club Aluminum cookware, which I love for its heavy bottom and sides. (And yes, I know there's controversy concerning aluminum cookware.) It's great for rice or making popcorn. But I use my secondhand acquired Revereware and Farberware for what I mentioned above, the tomato and fruit foods. Of course, I don't know if I have any sensitivity to metals in stainless, so this may not matter for me. But for someone who is sensitive or allergic to nickel, this isn't widely known information re: stainless steel cookware.
      A whole 'nother rabbit hole to descend into . . .

    4. My mother had some heavy-duty aluminum cookware, too. I remember it well.

      I actually had the same impression about stainless for acid foods. I bet it IS better than aluminum or cast iron. Given your choices of aluminum or stainless Revere/Farberware, and no known allergy, from what I've read, I'd continue to do the acid in the stainless, especially since it's used, was a good quality product to begin with, and probably is leaching less by now, if it ever did. Those are good brands, which I also cook in ... I'd guess a much better option than the cheap imported stainless you find everywhere.

      I know some people with allergies who have Visions (the glass stuff?) cookware, and like it. I think my folks got some, but I don't think I've ever cooked with it at their house. Has anyone ever cooked with those? I always had the feeling that it would be a pain because you'd always need a pot holder for the handles. I don't know if that's true or not, though. LOL Sara


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