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06-08-2015, 05:24 PM   #211
InstantCoffee
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Nope the patterns I have are very obvious, but I don't understand what's causing my skin lesions. It seems dietary but they take so long to form and are so sporadic I can't find a pattern.

My reactions to foods are sudden and extreme. There's no doubt about gluten, canola, nuts, or high fructose corn syrup. The reaction happens within minutes and lasts days.
I have experienced false leads but only because I had a new unexplained response and had to know why and to what.

I'm starting to think salicylate is one of them. Not using products that contain it has helped my skin but that may be a coincidence involving other ingredients. Ingesting them hasn't shown noticeable reactions, the only dots it connects is skin problems and why I can have instant coffee but not ground

I'm moving away from the bacteria theories because either I can't home treat it, or it's not effective. I'm starting to believe bacteria may be the egg not the chicken
06-09-2015, 04:45 AM   #212
UnXmas
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But from your log it looks like you've been trying to find the foods that cause you problems for a while (years) but you're still unsure about a lot of them. And also that you've often changed your mind and decided that foods you thought were good for you actually aren't, i.e. you saw patterns (correlations) between your diet and symptoms that weren't actually there. And the salicylate idea would be trying to apply something you read to your illness. I used to do that a lot too, then I'd find it wasn't working and move on to the next thing. I guess I just see your attempts to fix your illness through diet as similar to what I used to do, and for me it really didn't help, I just got neurotic about my diet and tried to acheive a level of wellness that it just wasn't possible for me to do. But maybe I'm wrong and you'll do much better, but I felt I should at least warn you, so it may be easier for you to recognise the problem should you experience the same.

Last edited by UnXmas; 06-09-2015 at 10:04 AM.
06-09-2015, 08:30 PM   #213
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InstantCoffee, the way I look at it, you still have inflammatory foods in your diet. Dairy, eggs, and oats from what I recall reading in your own thread. While you may think you tolerate them my theory is that all this creates a viscous circle where your gut will never properly heal...Which I think contributes to leaky gut and nutrient malabsorption for many struggling with weight gain issues. Just my thoughts, I know that it would be inconvenient to find replacements for dairy and grains since your diet is so minimal already. But if you've been taking a good dose of L-glutamine everyday or other healing supplements and your not making any progress, then there must still be something in your diet causing an inflammatory response.

While I don't have weight gain issues myself, I'm to the point where I'm going to try an auto-immune type diet to heal leaky gut to fix my huge list of non-digestive symptoms. Removing all common inflammatory food groups while supplementing with L-glutamine, gelatin, and bone broth for a good say...6 months. That means: no legumes (soy too), grains, dairy, chocolate, eggs, nightshades, refined sugar, alcohol, seeds, nuts, dried fruit, etc. Maybe I'm wrong, maybe some of you have tried such a minimalist healing diet and got nowhere, but it seems to be as far as we can take a dietary approach. Over the past 5 years trying to get remission I've always cheated with wheat, rice, nightshades, dairy, chocolate, eggs, beans, nuts, alcohol, basically everything. I've never really dedicated a good half year to completely avoiding all these potentially inflammatory foods. I feel like I only have my self to blame for not believing in the protocol and going in circles. I guess only time will tell.

The bacteria side may be a secondary cause of leaky gut that is better treated over the long haul (a few years) with low carb diet and low FODMAP produce choices. Unless you have some rare pathogen that a doctor could help treat somehow. Short of herbal antibiotics that's all you can most likely do yourself. Maybe specific fermented probiotic and prebiotic foods can help restore a good bacteria balance, but that might not be effective until you make progress healing your gut. I have an appointment with my old GI tomorrow to see if I can be tested for SIBO and even I'm still leery of taking antibiotics.

Last edited by WingedVictory; 06-09-2015 at 08:45 PM.
06-10-2015, 05:07 AM   #214
InstantCoffee
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UnXmas:
My problem has been cyclical for years but it's not a mystery to me at all that I can avoid foods and feel significant improvement. The question becomes is the food I have to now avoid that I was previously eating safely an antagonist in the diet, or simply a product of something else causing worsening of symptoms?

If it's something else, I need to be sure I eliminate that before it gets worse. The most reasonable way to know if something is causing a progressive deterioration of symptoms is to understand what causes the inflammation / symptoms which is why I've been looking for causes of Crohn's.

The bacteria cause was highly supported by the fact my symptoms have always linked back to grains and sugars, so I threw all my effort at that as my focus. I used probiotics, sugar restriction, natural anti-bacterial agents etc. but nothing produced positive results on that front. I believe maybe the first time carb restriction worked it is possible I had SIBO or candida, but it's not working like it did before, and I can't have rice anymore like I could then so something is different.

I had swollen / infected lymph nodes at the time and the diet saved me from those where doctors failed to help. My approach has produced amazing results on numerous occasions, it just takes a lot of misses before I find the target.

Right now I'm feeling very good. I've even started weightlifting again. I have energy all day, I do a fairly physical job and I don't need to stop and take breaks all the time anymore. What I've found right now has definitely been worth all the missed steps and research.



WingedVictory:

My concerns would be
-How high is your calorie intake going to be
-How diverse will your micro nutrient intake be, will you be getting all your vitamins and minerals naturally?
-How high will your cholesterol intake be via animal fats

The last time I got what was lasting 'remission' I suppose, I cut dairy and sugar and only had rice as a grain, fruits / vegetables, meat and eggs as food.

I did this for about 2 months strictly while supplementing undecylenic acid for candida (not sure if this helped or not) and high doses of vitamin C. During this time I had no symptoms and I was able to re-introduce spicy and high fiber foods I hadn't been able to eat in years.

I have concerns about blanket elimination diets though like what if you're nuking your natural probiotics, then you have to rebuild those from scratch. If you do it wrong you may just be plowing the fields for bad bacteria, and we don't know enough about proper bacterial balance.


Just thought I'd add, I'm also trying DMSO right now but I don't want to go too much into it, it's not something I'm 100% convinced of the safety of to advocate for others.
06-10-2015, 06:05 AM   #215
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InstantCoffee - that's ok, as long as it's helping you. I tend to feel I have a responsibility to say so when I think others may be having problems they haven't realised, but I only have your posts to go by, so I'm sorry if I reached the wrong conclusions. But since I do feel the need to point out problems, I would also add that candida and leaky gut are not proven in the way that you and WingedVictory are using the terms. I know there is such a thing as intestinal permeability, but its role in health and how to treat it are unclear. I've described my experiences with candida in this thread: http://www.crohnsforum.com/showthrea...hlight=candida

Ok, I've said my bit now.

At my pre-op assessment this morning my weight was 38kg (in clothes). Up from 29kg last Summer, and from 33kg after my surgery last Autumn. I did this by eating more than I'm comfortable with a lot of the time, and supplementing my diet with biscuits and chocolate and drinking Coke (the rest of my diet is healthy).

Last edited by UnXmas; 06-10-2015 at 07:44 AM.
06-10-2015, 07:47 AM   #216
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Just thought I'd add, I'm also trying DMSO right now but I don't want to go too much into it, it's not something I'm 100% convinced of the safety of to advocate for others
That's a new one on me. What does it do?
06-10-2015, 08:59 AM   #217
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No doubt leaky gut is poorly understood, as is prevalence of candida.

For now leaky gut is the closest theory we have to an explanation to crohn's induced food sensitivities, so I choose to pursue it from that angle until.

DMSO is a topically applied solvent that's treated as a pancea, if you will. It's a powerful anti-oxidant, anti-inflammatory and pain reliever. It's been used successfully to treat a handful of medical conditions but it's currently only FDA approved for interstitial cystitis.

It's believed to be safe and only has 1 death attributed to an allergic reaction.

The risk is that it's a powerful solvent and can transport chemicals across the skin into the blood so careful control of contaminants when applying it must be exercised.

We have posts by multiple people on the forums saying it's worked to end flares or even bring remission.

It also doesn't have immune suppressing effects like a biologic.
06-10-2015, 11:03 AM   #218
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I had nutritionists and other alternative medical practitioners treat me for leaky gut amongst other things. I only got sicker, it was disappointment after disappointment, I wasted time and money and effort eating a diet that isolated me socially. People who promote unproven medical conditions and treatments do a lot of damage and cause a lot of pain.

Leaky gut is not a recognised medical condition, and no diets, supplements or anything else have been proven as leaky gut treatments.
06-10-2015, 04:49 PM   #219
InstantCoffee
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Alt medicine is likely 90% quacks, and the other problem is they likely treat with blanket treatments like "Hey, garlic helps digestion, give them garlic!" Garlic messes me up.

You'd have to find a good one that is able to actually look at you on an individual level instead of just taking the most common diagnoses as their immediate approach. It's one reason I don't care to invest in one. I'll be really pissed if I go to one and they are way off base and when I try to explain what I know they put down my ideas because they're an expert. I will be livid, cause I have had doctors do that and be wrong in the past.

As far as leaky gut it's not 100% bunk. From wiki:
http://en.wikipedia.org/wiki/Intestinal_permeability

A proposed medical condition called leaky gut syndrome has been popularized which theorizes that restoring normal functioning of the gut wall can cure many systemic health conditions, but there is little evidence to support this theory, and no evidence that so-called 'treatments' for 'leaky gut syndrome', such as nutritional supplements and a gluten-free diet, have any beneficial effect for most of the conditions they are claimed to help.[7]
Increased intestinal permeability is a known thing, but leaky gut syndrome and its cause / effects are not scientifically validated.

If you look up Peyer's Patches though you'll see their implicated in the pathogenesis of Crohn's.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004000/
06-10-2015, 05:29 PM   #220
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I am happy you are having success without worrying as much. I think there comes a time when every patient should reach that point. Unfortunately, for people like instantcoffee and I are not at that point yet. For instance, I have spent too many years not worrying about what went in my system, and overtime, I became intolerant to more things. It took me a while to realize that I had to control what I ate. So I am on the other extreme end, but I feel great about - partly because I know that at some point I will find some middle ground.
06-11-2015, 04:40 AM   #221
UnXmas
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I did say in my post above:
I know there is such a thing as intestinal permeability, but its role in health and how to treat it are unclear.
So we can agree that it at least exists.
06-12-2015, 07:37 AM   #222
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Today I finally got back the results of my gastric emptying study, so now I've had it confirmed I have gastroparesis. It doesn't mean anything more can be done to stop me feeling so full but it's nice to have some objective confirmation.
06-12-2015, 07:47 AM   #223
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Please keep this discussion focussed on supporting people who are trying to gain weight! That's what this thread is for.
06-12-2015, 08:02 AM   #224
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Today I finally got back the results of my gastric emptying study, so now I've had it confirmed I have gastroparesis. It doesn't mean anything more can be done to stop me feeling so full but it's nice to have some objective confirmation.
Does having gastroparesis relate to not being able to absorb nutrients and gain weight?

It makes me wonder if prokinetic agents like low dose naltrexone would help with that.
06-12-2015, 08:42 AM   #225
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Does having gastroparesis relate to not being able to absorb nutrients and gain weight?
Not directly, but it can lead to bacteria overgrowth due to undigested food, and the bacteria overgrowth can cause malabsorption. Mostly gastroparesis just makes it hard to eat enough due to fullness and other symptoms.
06-12-2015, 02:22 PM   #226
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Please keep this discussion focussed on supporting people who are trying to gain weight! That's what this thread is for.
I have removed the posts that were obviously off track pending starting another thread for that discussion.

As UnXmas has said - please keep things on track here as this is a support group to GAIN WEIGHT - not discuss side topics.
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06-13-2015, 05:06 AM   #227
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Words can't express how nice it is to slip up and eat something I shouldn't and not lose sleep or get diarrhea, just some bloating and very minor nausea.

I tried some really natural chocolate with caocao nibs in it last night. Didn't sit well but something like that normally would put me out all day the next day with diarrhea.

Current protocol is working good. I just added MSM to the mix and got a shipment of pure taurine powder.

Salicylates don't appear to be my problem, turns out I had a false positive. When I cut salicylate skin topicals i also cut sulfates which were the real reason for my acne, but now i know to buy sulfate free soap and shampoo.
06-29-2015, 07:15 AM   #228
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I'm taking a break from gaining weight, now that doctors have stopped threatening me with hospital. My digestive system and my mind need a break from the stress. I'm still going to pay attention to what I'm eating so I don't lose much. I'm still more than 15kg underweight so I can't afford to lose much.
06-29-2015, 08:16 AM   #229
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My nutritionist says I need fat to gain weight; she suggested coconut oil and Udo's oil blend:3-6-9. Oil or fat cause me stomach pain. Anyone have any idea why?
06-29-2015, 08:28 AM   #230
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What kind of pain is it? Some fatty foods can cause heartburn. If it's heartburn there are many treatment options, and some types of fatty food will give more problems than others.

Besides heartburn, I know rich or greasy foods can be hard to digest, I'm not sure why. Are you able to eat small amounts of fat without pain? Do you have a problem with all fats and in all forms? E.g. is it oils that mostly cause you pain or would you get the same pain if you added cheese or butter to meals? What about smooth nut butters? There are many fat options so you may find something you're ok with.

Fat is very helpful to gain weight, and some is necessary for your health, but if it's really problematic for you you could probably gain weight on a diet that isn't high in fat, though you'd need to eat more as carbohydrate and protein foods are lower in calories than fats.
06-30-2015, 07:04 AM   #231
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I used to get pain from canola oil. Maybe corn oil too, I remember corn oil gave me issues but I don't recall if it was the same response as canola.

If I ate it my small intestines would flood with bile, motility would stop and I would get knife-like pain in my stomach.

It was from the small intestines overflowing with bile and other fluids and backing up the digestive process. I can tell because my stomach felt empty but if I forced myself to vomit, I could feel it spilling back into my stomach, then I would get relief after thoroughly emptying everything out.

The pain was so bad I couldn't stand upright because my abdominal muscles would put pressure on my gut which already felt ready to burst. Because of all the pressure it often felt like I had diarrhea or a big BM but I couldn't go, then when I threw it up that pressure / urge would go as well.

Is it anything like that, or a different kind of pain?

How are you with home made chicken / beef broths? Many people with CD have problems with vegetable oils. Coconut and extra virgin olive oil are the only ones ( to my knowledge ) I can safely tolerate.
07-01-2015, 04:33 PM   #232
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I am fine with broths, but I always take all the fat out of homemade broth. Should I keep it? Good to know others have problem with veggie oil. Coconut oil bothers me. Udo's oil, a combination of veggie oils, is ok in very small amounts, like 1 tsp in a bowl of rice.
I just bought light olive oil and hope I can ingest more of it. I salute with olive oil and it seems fine. At least I am not losing weight, but I wear size 0 and used to wear size 8, 2 years ago. Size 0 is very hard to find; I did find a GapKids jeans that fit great.
07-02-2015, 04:56 AM   #233
InstantCoffee
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I am fine with broths, but I always take all the fat out of homemade broth. Should I keep it? Good to know others have problem with veggie oil. Coconut oil bothers me. Udo's oil, a combination of veggie oils, is ok in very small amounts, like 1 tsp in a bowl of rice.
I just bought light olive oil and hope I can ingest more of it. I salute with olive oil and it seems fine. At least I am not losing weight, but I wear size 0 and used to wear size 8, 2 years ago. Size 0 is very hard to find; I did find a GapKids jeans that fit great.
You should keep it in if it doesn't make you sick.

I was more curious if you notice a difference between non-fried animal fats and vegetable fats.

Fats are easy to absorb calories and may be an important part to a diet for someone in recovery stages of Crohn's.

It may be possible for you to reintroduce coconut / olive oil in the future, but I can't make any guarantees. I've had intolerance to them both in the past but it's since gone. They both can be a good part of a diet when tolerated, but you shouldn't try to eat things if they make you sick, even in small amounts they could be triggering a bad response in the gut.
07-02-2015, 07:26 AM   #234
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i've always used fractionated coconut oil for cooking, or anywhere oil is required. I've never had issues with it, but even if I had intolerance, it was so long ago I've forgotten.

I've recently discovered the same company who produce the oil have margarine so I started to use it. That opened a whole new world as I have never been able to eat regular butter. Perhaps you can see if a margarine spread is available? It may be that the margarine format is easier to tolerate? Again, just use sparingly at first to get used to it.

Coconut oil requires gradual introduction as it is a medium chain fat, so the absorption method is different than olive oil. That might be what is causing some difficulty.

Have you tried cottage cheese for weight gain? You can get the low fat version which is packed with protein. I am addicted to it.

Greek yoghurt is also great, the low fat version with a sprinkle of cinnamon powder and honey if you can tolerate. It is full of protein and such a treat

If you need more info on the brand I use its here http://www.ceres-mct.com/ sorry the page is only available in german or italian right now, but google it for resellers
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07-02-2015, 07:59 AM   #235
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Aren't cottage cheese and low fat yoghurt too low calorie for weight gain? I get that fatty foods aren't going to help you gain weight if you can't digest them well enough, but don't you have to eat an awful lot of low fat cottage cheese to get a significant number of calories from it?
07-02-2015, 08:23 AM   #236
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Aren't cottage cheese and low fat yoghurt too low calorie for weight gain? I get that fatty foods aren't going to help you gain weight if you can't digest them well enough, but don't you have to eat an awful lot of low fat cottage cheese to get a significant number of calories from it?
It's also high in protein which can have satiating effects.

In general
Fats = medium satiation, highest caloric density
Carbs = Low satiation, medium-high caloric density
Protein = high satiation, medium caloric density.

There are exceptions, like high fiber carbs are high satiation, low calorie. High fat proteins are higher calorie, but that's because of fats not proteins.

That's not to say someone should live off fats and carbs to gain weight - this is why a balanced diet is ideal.
07-02-2015, 09:28 AM   #237
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I guess yoghurt may not be as satiating as some protein foods as it's almost liquid (and cottage cheese can be semi-liquid) as liquids leave the stomach faster than solids.
07-02-2015, 09:39 AM   #238
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Exactly! You have to balance it and check what has been substituted in favour of "low fat".
Again, its individual and for me it has to be low fat and certain types of fat, as well as high protein.
Gaining weight is not as easy as the so-called-normal people believe it is
07-02-2015, 11:00 AM   #239
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thanks for the discussion. Very helpful and informative. Kikig, I am dairy intolerant. Regular milk, cheese, ice cream, cream cheese all cause pain. Inst. Coffee, I can eat a little butter on non gluten waffle, for some strange reason. But I ate some Lactose free Yoghurt yesterday and it caused pain. Strange. I drink LF milk with no problem. I will try coconut oil gradually. So I don't know whether my body can take no veggie oil better than veggie oil, but it is something to explore. It is so tiresome to always be focused on what I can or can't eat! After having Crohns for 5 years I keep thinking I should know everything about what I can eat...and should be gaining weight, but the reality is different. Again thanks for your help.
07-02-2015, 11:33 AM   #240
InstantCoffee
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thanks for the discussion. Very helpful and informative. Kikig, I am dairy intolerant. Regular milk, cheese, ice cream, cream cheese all cause pain. Inst. Coffee, I can eat a little butter on non gluten waffle, for some strange reason. But I ate some Lactose free Yoghurt yesterday and it caused pain. Strange. I drink LF milk with no problem. I will try coconut oil gradually. So I don't know whether my body can take no veggie oil better than veggie oil, but it is something to explore. It is so tiresome to always be focused on what I can or can't eat! After having Crohns for 5 years I keep thinking I should know everything about what I can eat...and should be gaining weight, but the reality is different. Again thanks for your help.
Knowing what you can eat and why is a complex process to fully understand.

I cannot have any kind of yogurt I've tried, but I can have almost limitless milk or cheese.

If you want a deeper understanding of the chemistry and bacterial factors behind crohn's dieting you can check out my log:
http://www.crohnsforum.com/showthrea...t=72046&page=2

There's a lot of open discussion going on, I post a lot of articles, not everything is set in stone, but it gives you some ideas behind what is a good / bad idea for making a Crohn's diet, if you want more info / help feel free to PM me.
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