Help wanted (Score so far related)

[Jersey Girl]

I'm still rowing the boat. by the way, remember the OTC digestive enzymes I bought? I finally tried them in last week for 2 days! With the first dose I actually said "Just whang it in!" and took it. I don't think it did much of anything. I'll give them another try soon though. I've got until October to work my way up to the prescription Creon and I really want to meet that goal by my next appointment.

I read your post above too. How are your mast cells?

I've never had them tested. Do you think I should? I don't seem to react to the foods that trigger a histamine reaction. I could easily be missing something though.

Yay for whanging it in I think you are doing great. I know weight is on your mind and others but the amount of progress you have made since I've been following along is massive. I firmly believe weight will work itself out as you continue to work out how to navigate working with your body and hopefully it stops fighting you back.

Thank you! You've been following this whole entire times and you know. I do think I've come miles from where I started. I'm so tired of swallowing pills. I bet I take approx. 45 pills of something like that every single day. I should try to count them but some are as needed. I probably shouldn't post any weight checks on here because someone who hasn't really followed or only gone in and out of the thread a few times could think it's all about gaining weight while you know it's about addressing a myriad of things all at the same time and it's often hit or miss then try again. I've stayed away from food that once triggered me. I am planning to try some of those again. A food can be okay one day and not the next. Then you're trying to figure out if it was that food, the combination of foods, or unexplained reasons.

Autumn isn't far, are you looking forward to some more craftiness events?

Just the one I do in fall! I posted about crafting in that DIY thread I started. No photos this time. Not yet. Just me blathering about crafts. I've been crafting all summer but balancing it with playing catch up around here. No medical appointments until October thank the good Lord above!

I was doing a bit of light reading around here. Sounds like someone is nesting. Ha!

I think I'll do a food list here and try to leave the thread rest for a while. I've been taking intentional breaks from the internet which is so good for me.

[Jersey Girl]

Current food list.

Breakfast:

Oatmeal, pure maple syrup, cinnamon and fresh strawberries and/or blueberries

Lunch:

Reduced fat string cheese sticks or White Cheddar Cheese
Strawberries or Cantaloupe
Multigrain crackers or multigrain English muffin half or whole

Dinner:

Grilled chicken
Green Beans Steamed
Multigrain crackers or the occasional oven potato fries with olive oil and salt or multigrain English muffin half or whole

(Sometimes I switch dinner for lunch or lunch for dinner. Food portions have increased except for portion sizes on nutrition labels.)

Snackish Things:

String cheese
Multigrain English Muffin with a bit of whipped butter
Fritos
Pretzels
Maria's Chocolate Cookies by Goya (made with cocoa powder)

New foods about to be trialed:

I have all of the following.

Tuna
Non-dairy Yogurt made with coconut milk
Greek Yogurt high protein zero sugar and lactose free
Seed Crackers gluten free
Cheddar Cheese Rice Crackers gluten free
Poached Egg
Homemade tortilla chips with olive oil and salt
Baby carrots steamed, trying again

Idea: Multigrain English Muffin with fresh tomato slices, mozzarella, Parmesean, fresh basil, olive oil...PIZZA!

Might have missed something. Eggs wanted me dead when I had SIBO. Going to give it another try. I can basically eat anything. Digesting it is another story altogether.

[IWMP]

I read your post above too. How are your mast cells?

I've never had them tested. Do you think I should? I don't seem to react to the foods that trigger a histamine reaction. I could easily be missing something though.

Yay for whanging it in I think you are doing great. I know weight is on your mind and others but the amount of progress you have made since I've been following along is massive. I firmly believe weight will work itself out as you continue to work out how to navigate working with your body and hopefully it stops fighting you back.

Thank you! You've been following this whole entire times and you know. I do think I've come miles from where I started. I'm so tired of swallowing pills. I bet I take approx. 45 pills of something like that every single day. I should try to count them but some are as needed. I probably shouldn't post any weight checks on here because someone who hasn't really followed or only gone in and out of the thread a few times could think it's all about gaining weight while you know it's about addressing a myriad of things all at the same time and it's often hit or miss then try again. I've stayed away from food that once triggered me. I am planning to try some of those again. A food can be okay one day and not the next. Then you're trying to figure out if it was that food, the combination of foods, or unexplained reasons.

Autumn isn't far, are you looking forward to some more craftiness events?

Just the one I do in fall! I posted about crafting in that DIY thread I started. No photos this time. Not yet. Just me blathering about crafts. I've been crafting all summer but balancing it with playing catch up around here. No medical appointments until October thank the good Lord above!

I was doing a bit of light reading around here. Sounds like someone is nesting. Ha!

I think I'll do a food list here and try to leave the thread rest for a while. I've been taking intentional breaks from the internet which is so good for me.

My only reason for thinking mast cells is because you mentioned that some days you are ok with certain things and others you aren't (paraphrased) and that sounds a lot like mast cells playing up.

Sent you a screenshot.

I think you are doing great. And you have more variety of food now you are healing two years of damage and probably inflammation so it will take time to get your lining used to eating more.

Think I need to shut up sometimes I just know if I don't give myself deadlines I will take months to finish. These are jobs I started ages ago and I don't want to be decorating with a baby in the house or during Christmas so pushing to get it done. Husband did a good job with the white in the dining room after I went to bed. He said he will help with the green. That would be nice.

[Jersey Girl]

My only reason for thinking mast cells is because you mentioned that some days you are ok with certain things and others you aren't (paraphrased) and that sounds a lot like mast cells playing up.

Yes that's exactly how it is. I'll run the specialties of a doctor I found by you soon.

Sent you a screenshot.

Stunning!

I think you are doing great. And you have more variety of food now you are healing two years of damage and probably inflammation so it will take time to get your lining used to eating more.

Thank you! It might have been even longer than 2 years to work it's way into alarming symptoms. I don't think these issues happen overnight and they don't go away overnight either. It's a long tedious and often painful multipronged approach. I do think I'm over the peak of it all.

You saw the photos. A picture is worth a thousand words.

Think I need to shut up sometimes I just know if I don't give myself deadlines I will take months to finish. These are jobs I started ages ago and I don't want to be decorating with a baby in the house or during Christmas so pushing to get it done. Husband did a good job with the white in the dining room after I went to bed. He said he will help with the green. That would be nice.

I had so much fun reading about it and imagining the process! All I could think was nesting, nesting, nesting. I think if you just keep at it as you can you'll get it done and ready in time. I can well understand the need for that sense of self satisfaction and putting things in order. And yes, definitely enlist the services of your husband. I think men secretly enjoy painting and I don't know about him but the Boy works faster than I do. I'm very careful and he just goes for it. Painting (at least our hallway) is on my list of making up for lost time projects. I know I won't be able to get to the big projects but I've learned to let go of things. I set up my painting station for crafts off the back porch so I do that part time and the house list part time. And sometimes boys and girls, I do nothing but stare at youtube videos or listen to audiobooks or listen to nothing at all and just stare.

[Jersey Girl]

I have to post this right this very second! I just now read this in a devotional app type thing I get to read every day.

One day, amid the weight of all those questions, I realized something: Waiting didn’t mean God was holding back from me. It meant He was preparing space in me for growth, clarity, and His purpose.

That is what I've been saying throughout this thread. That all this time the Lord has been growing me in ways that I never imagined or even thought I needed to.

It is just as I said.

[Xenophon]

New foods about to be trialed:

I have all of the following.

Tuna
Non-dairy Yogurt made with coconut milk
Greek Yogurt high protein zero sugar and lactose free
Seed Crackers gluten free
Cheddar Cheese Rice Crackers gluten free
Poached Egg
Homemade tortilla chips with olive oil and salt
Baby carrots steamed, trying again

I'm hopeful for your upcoming trial foods. I'm know you and your doctor are working through this and I don't mean to armchair it up here but the protein content looks pretty low on your current menu(depending on how much chicken breast your able to manage at dinner). I know you previously mentioned nutritional shakes not sitting well with you but as you're eating improves that might be an area to explore again as well.

During my dad's chemo we really struggled to find ways to keep weight on him. Things like Ensure never really sat right with him (plus he absolutely hated the taste) but I did find that the Premier brand of protein products were tolerable for him and even though they're lower in calorie than is ideal for weight gain it was helpful in getting an additional boost of protein into him. If I shopped around and bought in bulk I was able to usually keep the cost pretty manageable too.

Idea: Multigrain English Muffin with fresh tomato slices, mozzarella, Parmesean, fresh basil, olive oil...PIZZA!

This sounds like an excellent idea. Two different pizza hacks I like:

• I'll make a simple flatbread using 1:1 greek yogurt and flour, 1 tsp baking powder, and salt. You can pan fry or bake them (I'll typically add an egg if I bake) and then top to your heart's content.
• Same concept but I'll use ground chicken as the crust. If you add a little parmesan, italian seasoning, and an egg (I know, but once you can stomach them again), then roll it thin on a sheet and bake you'd be surprised how good the texture can be. After that just top with your favorite things and I can usually scratch the itch without giving into all those otherwise delicious carbs.

Fingers crossed and good vibes for your ongoing process here, Jersey Girl. Know that even if we don't always comment you've got lots of folks rooting for you.

[IWMP]

My only reason for thinking mast cells is because you mentioned that some days you are ok with certain things and others you aren't (paraphrased) and that sounds a lot like mast cells playing up.

Yes that's exactly how it is. I'll run the specialties of a doctor I found by you soon.

Sent you a screenshot.

Stunning!

I think you are doing great. And you have more variety of food now you are healing two years of damage and probably inflammation so it will take time to get your lining used to eating more.

Thank you! It might have been even longer than 2 years to work it's way into alarming symptoms. I don't think these issues happen overnight and they don't go away overnight either. It's a long tedious and often painful multipronged approach. I do think I'm over the peak of it all.

You saw the photos. A picture is worth a thousand words.

Think I need to shut up sometimes I just know if I don't give myself deadlines I will take months to finish. These are jobs I started ages ago and I don't want to be decorating with a baby in the house or during Christmas so pushing to get it done. Husband did a good job with the white in the dining room after I went to bed. He said he will help with the green. That would be nice.

I had so much fun reading about it and imagining the process! All I could think was nesting, nesting, nesting. I think if you just keep at it as you can you'll get it done and ready in time. I can well understand the need for that sense of self satisfaction and putting things in order. And yes, definitely enlist the services of your husband. I think men secretly enjoy painting and I don't know about him but the Boy works faster than I do. I'm very careful and he just goes for it. Painting (at least our hallway) is on my list of making up for lost time projects. I know I won't be able to get to the big projects but I've learned to let go of things. I set up my painting station for crafts off the back porch so I do that part time and the house list part time. And sometimes boys and girls, I do nothing but stare at youtube videos or listen to audiobooks or listen to nothing at all and just stare.

Husband is definitely faster. But he makes a blooming mess. Lol. He stepped in the paint tray today. Thankfully cleaned up easily. I'm just cleaning the dining room floor. That room is done except I haven't done the skirtings. I'm going to do them another time. Once I get all the paint off the dining room floor I'm going to move all of the living room stuff into the dining room and cut the green in the living room. Only problem is that I need to mix up another tin of paint. Hopefully I can get it as close as possible to the same colour. And decided to wallpaper the chimney breast because the lining paper has lifted. It's easy enough to do. The hard part is finding a paper that isn't overwhelming but matches the colour.

[Jersey Girl]

Oh my gosh I have to report this right now because a new door may have just opened up to me, I want to document it, and going to walk through it.

Gastro NP (the one I like who has my same personality type--it matters) left me a voicemail to say she has got another patient who has ROEMHELD SYNDROME like I do and would like to get in touch with me. I don't know anyone in real life who has R.S. I'm doing it. I'm walking through the open door. We may have something to offer each other. I'll give my email address. I don't talk on the phone. I keep it shut off and only check intermittently.

FYI: The NP is the only one in the practice who took the information I gave her and pursued it further.

I'll get back to other replies here soon. This might sound weird but I can only tolerate so much interaction right now. That's exactly why my phone mainly stays shut off. I'll get back to it here.

[Jersey Girl]

True story. Preface: I'm usually a diligent label reader because I have to be.

1. For the past 2 days I've experienced dizziness.
2. Sunday I went to Target to pick up an order and knew I needed more lactase so I bought their version. Vanilla flavored and chewable. Very tasty. If I recall correctly that was actually the first lactase product I ever took back when all of this started.
3. Was making a Walmart grocery order and found their equivalent, much cheaper. Just read the ingredients and they contain...mannitol.
4. Looked at the Target brand and it contains...mannitol.
5. Mannitol is a sugar alcohol the same as xyliyol that they put in some sugar free greek yogurt. I stopped eating it because it made me feel "off" and...dizzy. It's also High Fodmap.

Lesson learned. Not all yummy healthy things are good for you. Now I'm dealing with symptoms, dizziness and bloating right under my diaphram. I'll be lucky if I don't end up in the ER tonight. Hating this.

LOOK at this AI summary for Mannitol:

If you experience dizziness after receiving mannitol, you should contact your doctor or a healthcare provider right away. Dizziness can be a side effect of mannitol and could be a sign of a more serious issue, such as dehydration or an electrolyte imbalance.

What to do immediately

Sit or lie down. Dizziness can increase your risk of falling. Rest until the feeling passes.

Stay hydrated. Mannitol is a diuretic that causes your body to expel water, which can lead to dehydration and dizziness.

Avoid sudden movements. Move slowly when getting up or changing positions to prevent the dizziness from worsening.

Do not drive or operate machinery. Dizziness can impair your coordination and judgment.

When to seek immediate medical attention

You should contact your care team immediately if the dizziness is accompanied by more severe symptoms. A medical professional can evaluate the cause of your symptoms and determine the appropriate next steps.

Seek immediate help if you experience:

A light-headed feeling, as if you might pass out.

Swelling in your hands, feet, or lower legs.
Trouble breathing, shortness of breath, or chest pain.

Signs of an electrolyte imbalance, such as confusion, increased thirst, or a fast or irregular heartbeat.

A seizure or convulsions.

Severe headache.

Pain, burning, or irritation at the injection site (if you received an intravenous infusion).
Potential causes of dizziness from mannitol

Dehydration: As a diuretic, mannitol can cause you to lose significant fluid, leading to dehydration.
Electrolyte imbalance: The fluid loss caused by mannitol can also disrupt the balance of electrolytes like sodium and potassium, which can cause dizziness, weakness, and other symptoms.

Hypotension (low blood pressure): In some cases, fluid loss can cause a drop in blood pressure, leading to dizziness.

Disclaimer: This information is for general knowledge and is not a substitute for professional medical advice. Always consult with a healthcare provider regarding any questions or concerns about your health or medications.

Here is Xylitol

If xylitol is causing dizziness, especially after eating, you should stop consuming it and seek medical advice from a healthcare provider to rule out other causes and prevent potential injuries from falls. You can temporarily address symptoms by consuming a small amount of sugar, drinking water, and eating smaller meals, but a medical evaluation is important to determine the best course of action for your specific situation.

Immediate Steps:

Stop consumption: Discontinue using xylitol products to see if your symptoms improve.

Consume a small sugar source: Eat a small amount of sugar or drink a sugary beverage to raise blood sugar levels, which can help alleviate dizziness.

Hydrate and eat lightly: Drink water and eat smaller, more frequent meals to help manage potential drops in blood pressure.

When to Seek Medical Advice:

Persistent symptoms: If dizziness continues after you stop consuming xylitol, see a doctor.

Accompanying symptoms: Be aware of other potential side effects like headache, nausea, or abdominal pain, as these may require medical attention.

Prevent injury: Dizziness can increase the risk of falls and other accidents, so getting it addressed is important for your safety.

Long-Term Considerations:

Consult your doctor:
.
A doctor can provide guidance on whether xylitol is the cause and what the best approach is for you.
Consider underlying conditions:
.
Dizziness can be a symptom of other health issues, such as low blood pressure after eating or more serious conditions, so it is important to get a proper diagnosis.

Monitor xylitol intake:
.
You may want to be more cautious with xylitol intake if you have digestive issues like IBS, as it can cause problems for some people.

ETA: Good night nurse. I just found TWO other supplements that I take have alcohol sugars in them. Be gone!

[Jersey Girl]

My. God.

The thyroid medication that I take apparently contains mannitol.

I'll be going to the pharm on Thursday or Friday to pick up RX's. I'm going to call in advance and have the pharmacist go through my regular meds one by one to see if any of them contain alcohol sugars.

Don't know if this will lead to a dead end or a break through, but I'm doing it. Not one single provider at the Gastro has ever gone through my meds even when I reported a reaction to xylitol and I didn't know what that was or why I reacted to it until the NP explained.

Score so far: 2 supplements and 1 regular RX med contain alcohol sugars. This has got to be some kind of bad joke.