Mastocytosis & Mast Cell Disorders

What do you guys do for diet? I’m in a hell hole IV gained 100 lbs. But most recent 60 lbs I’m so miserable fat lazy always tired and sick.

I want to do diet low carb and healthy but it’s like impossible I was able to be pretty healthy and manage weight and live active my whole life until I got this crap. Maybe starting to have diabetes now from weight gain ans steorids my life is falling apart. What works for you all? Anything? I do thr worst with veggies, and I’m a huge veggie girl. Silver is killing me and seafood is a no go nothing sea food I miss fish and such for light meals. I’m like left with crap. I do better eating chips and burger then I do with salad and veggies. Any tips I’ll appreciate xox

67 Answers

Answered Jan 9, 2018    reply

Keto

Answered Jan 9, 2018    reply

That’s basically low carb but I don’t towrkat veggies at all

Answered Jan 9, 2018    reply

you don't have to eat veggies and fruit. i don't tolerate veggies either. get healthy fats from meat, dairy, and almonds if you can. eat the veggies you can tolerate and go from there. today I had scrambled eggs and ham for breakfast. lunch was a protein shake, and dinner was a lettuce wrap. as long as you stick to under 30 carbs a day and get about 70% fat in you're good.

Answered Jan 10, 2018    reply

sunday my doctor put me on two weeks of Xfaxamin (costly unless get from Canadian pharmacy) and cleared my SIBO and between that and cromolyn have the most regular GI I have ever had in my life. Diarrhea and stomach cramps and bloating were part of my life as long as I can remember. My folks wouldn't tell me ahead of time we were going somewhere because happy stress of anticipation would make us miss it because would be in the bathroom instead.

Answered Jan 10, 2018    reply

Beulah awe thanks

Answered Jan 10, 2018    reply

I totally understand how you feel. I am also diabetic. I try to just eat as much protein and fiber I can get my hands on. A lot of cheese, meats that I tolerate and vegetables that I can eat. Please take in 30 grams of carbohydrates a day. If you don't then the Ketosis will cause your kidneys to shut down. It takes at minimum 30 grams of carbs to make enough sodium bicarbonate by the kidneys to keep your pH balance within safe limits. I eat a lot of roasted vegetables that I can tolerate. It is so very challenging. I eat 100 calorie oatmeal for breakfast and a yogurt if I can tolerate the yogurt. Lunch I usually eat chicken tenders. Dinner has to be meat and small portions of potatoes, rice or pasta. Good luck sweetie.

Answered Jan 10, 2018    reply

casarez thank you for telling people to take in the 30 grams of carbs. Not many people know to do this or the dangers of not consuming enough carbs. There are a lot of carbs in veggies and fruits.


Answered Jan 10, 2018    reply

I do the Fasting-Mimicking (FMD) diet 5 days out of each month to stimulate my body to burn fat. Then, we eat low-carb, Keto for the most part..my husband and me also work out on a recumbent bike for 1/2-45 min a day. It is working for us to loose excess fat, cardiovascular health and supports our sleep disorders. I think the FMD is the best thing that happened to me this year. It got rid of three of my conditions, too.

Answered Jan 10, 2018    reply

What’s fmd ?

Answered Jan 10, 2018    reply

Roselyn https://thequantifiedbody.net/fast-mimicking-diet/


Answered Jan 10, 2018    reply

Hmm I’ll have to look it up and see . Stinks for keto I just can’t tolerate crap


Answered Jan 10, 2018    reply

You can try intermittent fasting. I do it on top of keto. 8 hours to get meals in and 16 hours fasting. https://youtu.be/lwCRjwDs1Ek

Answered Jan 10, 2018    reply

See my sugar issues is new to me


Answered Jan 10, 2018    reply

The only thing that works or me is low carb And I still have some of them eight I put on last year to lose . Just eating meats and veggies. Today I had 4 pieces of bacon with a sweet potato and steamed Brussels sprout. A banana a red skinned potato and a turkey burger. Then some raw camel milk and prunes. I needed more veggies but the prunes gave me bad gas lol so that's a no go tonight


Answered Jan 10, 2018    reply

See I would love all that. I can eat a bag of chips be fine . If I eat a bowl of Brussels sprouts I’m death. Or any fruit I can’t even touch it sends my sibo over the top. Can’t do any seafood or pork

Answered Jan 10, 2018    reply

I’m the same, my go to is plain chips.....wtf!

Answered Jan 10, 2018    reply

I'm in the same boat sorry you're going through this

Answered Jan 10, 2018    reply

A lot of us tolerate potatoes best I find . It’s so freaking hard


Answered Jan 10, 2018    reply

then you should probably get diet tips from your doctor. or look at going elemental?


Answered Jan 10, 2018    reply

Can you do chicken bone broth? Try and find 1 veggie you tolerate. Ty them in the hospital parking lot. You need veggies.

Answered Jan 10, 2018    reply

I can do zucchini. And cucumber

Answered Jan 10, 2018    reply

I would eat those two then and white potato with a fade meat until your system calms down.

Answered Jan 10, 2018    reply

Wakefield yeah that’s what inneed to do

Answered Jan 10, 2018    reply

sunday I've been there. Calling 911 every few days, starving , I only had 1 food and it was McDonald's fries. But I started with nothing and tried new foods every day at the hospital until I established safe foods.

Answered Jan 10, 2018    reply

You need to do that

Answered Jan 10, 2018    reply

Wakefield

Answered Jan 10, 2018    reply

sunday yes dear?

Answered Jan 10, 2018    reply

Wakefield opps lmao I didn’t see it doing that sorry girl lol

Answered Jan 10, 2018    reply

sunday

Answered Jan 10, 2018    reply

Stick with potatoes (like roasted, mashed, etc, not chips), cucumbers and zucchini for awhile. After a few weeks try slowly adding in one thing at a time.

Answered Jan 10, 2018    reply

sunday I ate all veggies last year, I also only eat zucchini and cucumber!
Broccoli is hard to digest... I miss my veggies.
I believe Histamines cause weight gain.
My meds for pots have made me gain weight, not being able to work out, or eating the right foods for detoxing.

Answered Jan 10, 2018    reply

evette omg yes I love broccoli cabbage and Brussels sprouts . So much I literally hate zucchini and chicken bcus I ate them so much

Answered Jan 10, 2018    reply

sunday I so understand. I have POTS as well and having that and Mast cell is like a full time job that's bipolar. Excuse the term but it's true!


Answered Jan 10, 2018    reply

I feel your pain. I've gained a ton of weight as well


Answered Jan 10, 2018    reply

I do the keto diet and really enjoying it. First two weeks make you feel rough but after that its brilliant. Lost inches more than weight but then weight fell off and only been on it for 3 months


Answered Jan 10, 2018    reply

Auto Immune Paleo. With Sibo treatment. I lost 100 pounds with paleo and AIP.


Answered Jan 10, 2018    reply

Have you had your cortisol checked?

Answered Jan 10, 2018

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Answered Jan 10, 2018    reply

Yup..mine was a spit test..for the whole day/night cycle. Mine was high when I it should be low..and low when it should be high. I was a hot mess..

Answered Jan 10, 2018    reply

Mine was the same too. Now I can feel if it does that again, and take supplements to help.

Answered Jan 10, 2018    reply

I just did this, getting my results next week!


Answered Jan 10, 2018    reply

P.s. I gained 60 lbs in 16 weeks..at my most sick 10 yrs ago...it's All gone now


Answered Jan 10, 2018

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Answered Jan 10, 2018    reply

I was able to add veggies back into my diet after adding collagen.

Answered Jan 10, 2018    reply

Why?

Answered Jan 10, 2018    reply

According to my integrative doctor it helps to heal the gut lining and reduces the inflammation in the gut. I noticed my stomach hurt less, my stools were more solid and I stopped getting the issues from my EoE (like vomiting up my dinner). When I stopped taking it ( I ran out and had not ordered more) I noticed I started having issues again. I have not been able to add red meat, dairy or nightshade back in but I was able to add in a lot of green veggies.

Answered Jan 10, 2018    reply

eberle what kind of collagen and how often do u take it? I have joint issues, do you think it could help for that? Thanks!

Answered Jan 10, 2018    reply

Roselyn, I believe so. I loaded up on it before and after my hysterectomy and my surgeon was amazed at how quickly I healed. I really believe it helps with repairing all the areas that use collagen. I use Sports Research brand. It is on Amazon and is grass fed. I also drink bone broth when I am super reactive.


Answered Jan 10, 2018    reply

I keep reading to do the keto genie diet. I need to jump in.


Answered Jan 10, 2018    reply

I have MCAS and have had a similar issue. I made a list of low histamine foods, then compared against a low fodmap diet and only food that are both were on my safe list. Then took out all gluten (celiac). I then used that food list to count my carb intake and that seems to work. It is difficult it do able.


Answered Jan 10, 2018    reply

I am so much like you sunday. I lost most veggies except cauliflower and broccoli. Can have oj and applesauce cups. I miss all my fruits and veggies and salads. Eating chicken and burgers. Pizza cheese eggs are ok. Lost my fav tuna. Eating extra on wheat bread and fortified cereals like special k cheerios and frosted mini wheats and can take a vitamin. And i walk walk walk. Altho upsetting...
I have to thank god i can eat this much. There are some cant eat at all. I cry when i think of them and i keep praying for them. I wish a miracle. Stay strong find every healthy thing. I drink milk fortified with vitamin/mineral ovaltine. This takes work but we can do it. Stuck on low dose steroids too


Answered Jan 10, 2018    reply

dont watch others eat their salad and veggies! Talk about jealous! I just wont look anymore

Answered Jan 10, 2018    reply

Me too...sigh


Answered Jan 10, 2018    reply

You have to have the mindset of getting as much healthier food in you that your body can take. Some days i am just eggs and wheat bread and cereal. And walk. Cuz this takes effort to be healthy.


Answered Jan 10, 2018    reply

I eat organic, low histamine, gluten and corn free. I keep my sugars to minimal. We eat fairly low carb/keto because my hubby was borderline type 2. If cortisol is normal may mean adrenal fatigue instead of adrenal insufficiency or side effects from one of the meds you take.


Answered Jan 10, 2018

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Answered Jan 10, 2018    reply

Try candida diet/elimination....in one month I lost 18lbs....gluten free, no processed food, no alcohol, no sugars, no yeast products, no nuts from ground like peanuts or pistachio, no mushrooms, no nightshades, no fruit for two weeks and then add only one serving per day, no soy beans, no dairy,no white potatoes.....good luck


Answered Jan 10, 2018    reply

Since Keto & some low histamine changes my SIBO has calmed right down and my sugar balanced out -thank God cuz the low sugar drops were exhausting me!

Answered Jan 10, 2018    reply

Omg yes this is me

Answered Jan 10, 2018    reply

The blood sugar drops are exhausting. My pots medications are causing them!
I was prescribed cromolyn but haven't started it yet.

Answered Jan 10, 2018

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Answered Jan 10, 2018    reply

Can you send it to me
Please . I was in ketosis when I was sick starving to dr said he never seen anything like it lol. I lost 31 lbs in 20 days


Answered Jan 11, 2018    reply

Sorry if I missed it but have you been tested and/or had an upper endoscopy? I started to gain weight like that and was beyond distended. Turned out I had an hpylori infection. Fixed that now I’ve lost all the weight. Going in the other direction


Answered Jan 11, 2018    reply

Micheal Envoy and Julie Sands, skype, methylation nutritionists. They get MCAS. Helped my son heal after 60 lb weigh gain from steroids.

Answered Jan 11, 2018    reply

please call them...don't resort to desperate measures.


Answered Jan 11, 2018    reply

What do you put on your veggies. Vinegar is in most dressings and can affect us. Plus look at a list of high histamine vegetables and try to avoid them. I don't do low carbs and just eat nothing processed. Unbleached flour made a difference in my breads. Basically oatmeal, antihistamine smoothies, eggs and toast, salad homemade dressing, veggie sandwich, no lunch meat, pasta with cauliflower sauce, roasted red pepper sauce, fried rice, no left over meat, freshly caught fish. I hope this helps.good luck. It's so hard at first.


Answered Jan 14, 2018    reply

Trim Healthy Mama


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