Still feel sick

[dolson]

I've eliminated alcohol all together. I only eat food that's safe. Last night my husband and I went back to the 1790 and I had water and cranberry juice with sugar. I was experiencing a diabetic low. Dr. Fine said no orange juice. I guess the acidity irritates our delicate system. Had a good time and spoke with relatives. I know all born and raised Savannahians. Then we went on the waterfront and I had boiled shrimp, boiled only in water. I had twenty shrimp with my bring a long ketchup. It's pure and the ingredients are simple. No soy.

When I got home, I got sick. Not extreme sickness but I should of never gotten sick.

It seems that whatever you do...right or wrong, you still get sick. I take immodium, antihistimines, and try to eat and drink appropriately. Could eating a larger meal make us sick? Twenty shrimp with well-cooked green beans is a big meal for me. Maybe my system can't handle that much food at one sitting.

Will I ever understand this perplexing disease? I am truly baffled and tired of being sick. I had a large amount of pumpkin pie for breakfast. It was a diabetic pumpkin pie. I used honey instead of artificial sweetner and did use brown sugar. The ingredients were pure and simple. No bad ingredients. The pumpkin was canned. Pumpkin pie with no crust is delicous and a treat.

I looked at my father's death certificate at age 49 or 50 in 1975, and it said his demise was Type 1 diabetes and Malabsorption Syndrome. That scares me.

I am my father. Scandanavian. I look like the Olson family. Will I end up like him? What am I doing wrong? Thanks, Dorothy

[tex]

Hi Dorothy,

I don't believe that you will have the same problems as your father because you have changed your diet — you no longer eat the way that he did so you should have way less inflammation. And you are already way past that critical age at which he passed.

Yes, an unusually large meal that we are not accustomed to can cause us to get sick because we tend to run out of some of the enzymes needed before the digestion is completed, and that partially digested food spoils.

Also, I couldn't tolerate tomatoes or catsup while I was recovering for the same reason why orange juice is not recommended — tomatoes are a citrus fruit and they contain citric acid, just like oranges. That may have been the reason you got sick, or it may have been a combination.

Incidentally, if you're concerned about diabetes, and you can tolerate eggs, recently-published research suggests that an egg-a-day helps to prevent diabetes. For decades the food police falsely claimed that eggs are bad for us. Actually they are one of the healthiest sources of protein that we have available to us.

Eggs not linked to cardiovascular risk, despite conflicting advice

Egg metabolites in blood related to lower risk of type 2 diabetes

Tex

[brandy]

Hi Dorothy,

Were they peel and eat shrimp? i.e. Did you peel them? I generally consider them safe.

[dolson]

This was boiled shrimp in shell. I grilled the restaurant to make sure soy was not used in the boiled shrimp. I have eaten boiled shrimp at festivals with no carry on ketchup. Just plain and simple boiled shrimp and I had no problems. I agree with you Tex. I think it's the ketchup that made me sick. I ate one fourth of Hellman's Ketchup in the bottle. You are right Tex, ketchup is a citrus fruit and irritates our system. Another food I have to knock off my list.

Thanks for telling me I am safe from "Malabsorption Syndrome" that contributed to my father's demise. Back then they had no idea. Today the GI specialists have no idea. Forty-four years have passed and nothing has changed. Shameful!

Thanks Tex and Brandy for your concern. Dorothy

[brandy]

Hi Dorothy,

Yes, generally I find boiled shrimp in shell, steamed oysters that are shucked in front of me and jacketed baked potatoes
are some of the safest things to eat in a restaurant setting.

I assume the restaurant supplied ketchups in the 2" open containers and cocktail sauces are contaminated with
gluten from the fry dust operations.

Dorothy....I can eat ketchup, homemade cocktail sauce (ketchup and horseradish sauce) and oranges now but it was
several years before I could eat those types of items.

[Gabes-Apg]

Dorothy
sorry you are still struggling

you may not want to hear this but I would simplify the diet further... as Tex and Brandy have mentioned not many can tolerate citric acid type ingredients (tomato, ketchup etc) in the early stages of healing.

eating out is a high risk activity in the early stages of healing.

Will I ever understand this perplexing disease? I am truly baffled and tired of being sick.

in short yes you will, albeit if you try to upkeep life before MC (eating out, foods/ingredients etc) then you will continue to have symptoms.
in this stage of reducing inflammation and promoting healing, we have to let go of LOTS of things that were part of our day to day life before MC, grieve them, accept the changes and embrace what is. When we do this emotional and mental work, healing happens!!

I had a large amount of pumpkin pie for breakfast. It was a diabetic pumpkin pie. I used honey instead of artificial sweetner and did use brown sugar. The ingredients were pure and simple. No bad ingredients. The pumpkin was canned. Pumpkin pie with no crust is delicous and a treat.

you need protein every meal, every snack... good protein is key to healing.

[Marcia K]

Hi, Dorothy. I'm 5 years post-diagnosis and still have issues when I eat out. If it weren't for my husband I doubt that I would eat out at all. Last night I ordered a steak, baked potato and steamed broccoli, all plain, no seasoning, etc. We ate at a restaurant that has a gluten free menu. By the time we arrived home I was gassy, belching, woke up with a headache....no matter how we try we aren't safe when we eat out unless it's a totally gluten free restaurant. I took two GlutenEase before I ate, another when I got home and I soaked my feet in epson salt before bed. It stinks.

[tex]

Hi Marcia,

Those are the symptoms that I get if/when I eat beef — slight bloating, and a headache. I don't get diarrhea, but the other symptoms are bad enough that I stopped eating beef. I also usually have upper back or shoulder pain about half-a-day later.

Tex

[Marcia K]

Hi, Tex. I'm starting to think it is beef although I don't seem to have a problem when I eat it at home. The last two burgers I ate out made me sick. There really wasn't much on the menu I could eat and I thought steak would be the safest choice. On their gluten free menu they had several foods listed but then added "there could be some flour in the fryers". Yikes! I think I'll stick with ice water when we go out to dinner!

[barbieAnn]

Hi Dorothy,

You had answered me on my last post - I feel for you. I understand totally what you're saying. You feel as though you are doing everything right and then Wham! You get sick again. I was just telling my husband that I must be one of the healthiest eaters on the planet, but something still isn't agreeing with me. I'm working on deleting my gluten free bread - I honestly don't know what it is that's preventing me from healing. I have read so many diet books for IBD - eating alot of the "best" foods to work against inflammation. Nothing seems to work.

Hopefully we can find the answers soon - this board has been so great. Thank goodness for everyone here!

[Gabes-Apg]

I have read so many diet books for IBD - eating alot of the "best" foods to work against inflammation. Nothing seems to work.

reducing inflammation and healing is more than just diet.
if external triggers such as, stress, hormones, external toxins, medication etc are contributing to the inflammation then foods to reduce inflammation will not provide remission.

please keep in mind that MC inflammation is not the same as other IBD's. so anti-inflammatory foods suggested for IBD's may not work for MC.

there is also the mental and emotional aspects. my observation of my own journey and many people that have come to this group, diet, supplements and medication are not enough... it is how we approach life with MC mentally and emotionally that supports good healing and remission.

[carolm]

Hi Dorothy and BarbieAnn,
Gabe’s jumped in and said what I was thinking so I’ll add just a couple of things. Remember that MC is autoimmune so you are treating a broader system, not just the GI tract, and that’s partially why advice for other IBD does not work for MC.

To the list that Gabe’s provided above I’ll add seasonal allergies. In the past I would be managing fairly well then my spring allergies would hit or the pollen counts were up and I would go two steps back in my progress.

Also when reacting, a person may have to ditch all grains for awhile. I found that even gluten free grains were problematic- I don’t know if it was the fiber or my lack of digestive enzymes, but I was better off without them. Now in remission I have other grains but in small amounts and just 1-2 times a week (rice pasta).

Do check all of the fillers in your meds and supplements. I had a real setback until someone here told me that alpha-tocopherols were soy (thanks Polly!). I thought I knew all the places soy could hide and I was wrong. I hurt all over and thought I was developing fibromyalgia- that’s how extreme my reaction was. It went away when I stopped the Omega3 supplement with alpha-tocopherols in it.

Stress is the wild-card that shows up just when things are going well. I suggest that if you don’t have a solid strategy to help manage your stress, please develop one. It’s best if it’s a combination of things- exercise, meditation, a hobby, a favorite author who gets you centered- mine are Pema Chodron and Rick Hanson. You get the idea. Your stress management tool bag needs to be full! Buy what you need now to have on hand to help yourself later- a book you’ve been wanting to read, new music to listen to, Bath salts for a hot soak, download a meditation app, investigate yoga videos on YouTube .... etc. be ready so you have stress management tools at your fingertips. If food/eating/ drinking was your coping tool before MC, you will have to find something else.

And to be honest there were evenings where my coping skill was to let go of worrying/ thinking/ researching and just go to bed early knowing that tomorrow was a new day (and likely to be a better day).

Best wishes, Carol

[TM]

Hi BarbieAnn and Dorothy,
So sorry to hear of your continuing difficulties. I was thinking of you two when I posted the info about Citrobacter Freundii a few days ago, since pathogenic bacteria can undermine even the most disciplined efforts to achieve remission. Have you both ruled out this possibility?

Also, re: weight gain. Although we all respond differently, I can’t overemphasize how instrumental coconut products have been in helping me subdue my symptoms and regain over 20#—from 96 up to 119. I still consume “mass quantities” of coconut daily and have been maintaining a stable weight of about 110 lbs.—except during several brief flares.

It gets somewhat boring, but you can kind of simulate cereal or dessert with unsweetened coconut flakes/chips and coconut milk. I add a tiny amount of maple syrup or coconut sugar to the milk and microwave briefly with the coconut to soften it. If you prefer, you can let it cool before eating. Now that I can handle some grains, I’ve been adding unadulterated rice puffs or chex—after heating—so they don’t get mushy. You can also add additional ingredients that you’ve found to be safe. I still eat lots of plain dried coconut by the handful, and there are a number of commercial coconut macaroons, bars and other snacks that are convenient and “fattening”—but you have to check ingredients carefully.

Hope things start looking up soon.
Teri

[dolson]

Hi Teri, Carol, Gabes, BarbieAnn and Tex: Any way you slice it, dice it or whatever, MC is one of the most baffling diseases I've ever experienced. I'm not a depressed person, but this disease puts me away. I could cry everytime I have the D! You can eat this, you can't eat that, you have to be careful with makeup, cologne, toothpaste, suppplements, lotions, and the list goes on forever. Plus we have no professionals for help. It's a hit or miss type deal. Try it and see if you can stomach it. I now wear DEPENDS. I am SCARED OF FOOD! FOOD TERRIFIES ME! Sometimes I just don't want to eat for fear of accidents or living in the bathroom. My toilet TOTO has become my friend. Yea, TOTO is a good toilet. Maybe the Best! I've always wanted one, and my husband bought me a TOTO. Now I'm advertising toilets.

Back to feeling sorry for myself. We need help and funds. We need GI Specialists to know about this mystery monster. If it was just a gluten-free diet, that's easy, but there is so much we can't eat, plus everybody is different.

Tex is the Best! I don't know what I would do without Tex and Gabes, plus everybody experiencing the trials and tribulations of MC. Thanks for listening to me, y'all. Misery loves company. Dorothy

[Janie]

No matter how hard it is, and it is hard, you have to get up in the morning stick to safe foods and think positive. You can't control the knowledge of Doctors but you can research this site for help and improve your knowledge by reading the posts.