Scared About Continued Weight Loss--Have Questions

[brookevale]

Hi,

I am scared as I continue to lose weight rapidly though I am on Entocort (helped give me normans) and eating a minimal diet of meat and vegetables. I found things get worse with the weight loss if I had even small amounts of coconut oil, flax seed oil, or olive oil to my meals. I figured out I can't tolerate almond milk or anything with guar gum or carrageenan. I also think high FODMAP vegetables like broccoli and cauliflower are adding to my misery so I will stop them. I haven't "cheated" outside of the diet in close to a week. I can't do nuts or nut butter and any starches or carbs are out of the question--can't tolerate. I feel like I'm starving to death. I have muscle wasting and am severely underweight at 105 lbs (down from 135 lbs in December).

Does anyone else have problems with high FODMAP vegetables, oils, and nuts/nut butters? I think I have small intestinal bacterial overgrowth (SIBO) and systemic candida as I have had severe vaginal issues. I feel like I just want to give up! I am so weak and the malnutrition is affecting my mental state. I wonder if I have severe bile malabsorption going on. My doctors are so useless.

Thanks,
Brooke

[gluten]

Hi Brooke, I have been dealing with malabsorption for many years and it has caused muscle loss. What muscles are affected? Do you take a protein supplement? Can you eat eggs? The problem with a total carb free diet is it eliminates the first fuel for the muscles. Then fats are used for fuel. When, carbs, fats and protein are not available muscle is atrophied to provide fuel. I also have a problem with too many starches. Jon

[Chrisdat]

Brooke, I found MCT oil (purified from Coconut Oil) very tolerable. It does not go through the digestive system, nor does it need digestive enzymes. I use a little of that on top of meat and veggies I can eat. You can buy from Amazon. It will provide good fat calories.

Fats for me are the easiest, if kept in low amounts (but they pack a lot of calories). They have kept me from wasting totally away. Animal fats like lard (ground beef cooked in lard - lots of fat and proteins, drained of course) is very satisfying. I use Ghee, Lard, Tallow, Duck Fat, small amounts (teaspoon) of Coconut Oil, a tablespoon of MCT oil, and just a splash of Olive Oil (hardest for me).

FODMAPS - yes, I have some problems. But find I can't go by a list. I have to individually test. I can take many FODMAPS in small amounts. Avocado (1/4) with other food is OK for me. A half of garlic chopped up and mixed with my green beans and finished in one of the fats above (of course, well cooked before I finish them).

Broccoli is no good for me. Cauliflower small amounts. It is very individual.

I understand your fears. I too share them. I've lost 35 lbs. since Jan and yes, they are talking feeding tube. But I'm going to keep trying to make this thing work. Hang in there.
Chris

[tex]

I wonder if I have severe bile malabsorption going on. My doctors are so useless.

I hesitate to bring this up, because if you don't have elevated liver enzymes and signs of jaundice, it's kind of a long shot. I asked about liver enzymes to rule out primary sclerosing cholangitis (PSC), but your mention of bile-associated malabsorption issues raises some questions again. PSC is an autoimmune condition that can cause severe pruritus, and it is known to be associated with IBDs (especially UC — something like 70 % of PSC patients also have UC).

If your doctors have already done a scan of your bile ducts (either by means of endoscopic retrograde cholangiopancreatography (ERCP), or magnetic resonance cholangiopancreatography (MRCP), then they have already ruled out PSC. If they haven't, maybe they should, just to be on the safe side.

It's also possible, IMO, for MC to cause symptoms that can mimic many of the symptoms of PSC (but of course this is undocumented in the medical literature).

And yes, many of us tend to have problems with FODMAP foods.

Tex

[brandy]

High calorie foods--

uncured bacon--almost everyone can tolerate this
avocado
Put a blob of bacon fat or other fat on your burgers and meats when cooking.

Force yourself to eat every 2 to 2-1/2 hours even if you don't want to. Make a large batch of whatever you can eat once a day and eat every 2 to 2-1/2 hours.

[Pat]

I can't eat bacon (pork) or avocado.

Can't eat FODMAPS or nuts or nut butters. I only use olive oil and in small amounts.



Get tested for SIBO, hydrogen breath test. Demand it!

Have you tried a probiotic for the Candida? The only pure one that I know of is by GI Pro Health.

Pat

[Leah]

I use uncured bacon fat also.

[UkuleleLady]

Hi Brooke, I was where you are at last year.

I gained a lot of weight back by drinking coconut milk. Also by eating tortilla chips, which I could tolerate. I also ate some form of meat three times a day, beef, turkey, lamb, etc.

Can you try to eat plain boiled potato? I think you might try different carbs? Carbs will help you gain weight.

I gained back the twenty plus pounds I lost, but it did take entocort and me logging everything in myfitnesspal to make sure I was getting enough calories for a few months.

You are going to be ok. Try to believe that.

Nancy

[jgivens]

Nancy is so right! I went back yesterday to read my first post on this forum and was suddenly transported to the feelings of panic, fear, and frustration I had in January of 2013. It takes awhile to figure it out, but eventually we all do, and life DOES get much simpler than it feels right now.

I feel SO much better than I did a year and a half ago, it is unbelievable and it was mostly diet induced healing, though the fine people of this forum kept me going with their support when I wanted to just give up. I took a mindfulness meditation class, did accupuncture, and massage and I am happy to say that although, I still have some gut "issues" and it will be a continuing battle the rest of my life, I am a much happier, healthier person today.

The weight loss will stop and somehow, some way, you will find a healthy balance so that you can breathe a sigh of relief and tell the next person at this time next year that their gut issue will not last forever. Hang on and keep posting, we are happy to support however we can.

[CathyMe.]

Hi,

I am scared as I continue to lose weight rapidly though I am on Entocort (helped give me normans) and eating a minimal diet of meat and vegetables. I found things get worse with the weight loss if I had even small amounts of coconut oil, flax seed oil, or olive oil to my meals. I figured out I can't tolerate almond milk or anything with guar gum or carrageenan. I also think high FODMAP vegetables like broccoli and cauliflower are adding to my misery so I will stop them. I haven't "cheated" outside of the diet in close to a week. I can't do nuts or nut butter and any starches or carbs are out of the question--can't tolerate. I feel like I'm starving to death. I have muscle wasting and am severely underweight at 105 lbs (down from 135 lbs in December).

Does anyone else have problems with high FODMAP vegetables, oils, and nuts/nut butters? I think I have small intestinal bacterial overgrowth (SIBO) and systemic candida as I have had severe vaginal issues. I feel like I just want to give up! I am so weak and the malnutrition is affecting my mental state. I wonder if I have severe bile malabsorption going on. My doctors are so useless.

Hi Brooke,
Please don't give up. We all have been in your shoes. I too had the massive weight loss that you are experiencing which was very scarey and made my anxiety go through the roof. I would weigh myself daily and just watched the numbers go down and down and down (I got down to 100 lbs. at my lowest). Stick with the clean, simple foods. I was able to tolerate coconut oil and cooked my fish with it and also ate it by the spoonful. Have you tried rice cakes for your carbs? There is a gluten free variety and I used to eat that with coconut oil spread on top and tuna fish. What are you eating for protein?
It does get better, I can promise you that. I am a success story and after 1.5 years of eating this way, I have been able to put my muscle back on and am now a healthy 120lbs.

[brookevale]

You are all so wonderful. I am going on a week or two of sticking to a committed strict diet. I feel like I have some sort of die off going on (headaches, flu-like feeling, fatigue). Could I possibly get worse before I get better? I have been feeling rather depressed and angry too. I am flying off the handle at my husband and kids. I don't like feeling so irritable. I'm trying to add in some NOW MCT oil I just got. I hope I can tolerate it as every other oil upsets my stomach. I am going to a holistic nutritionist next week as well. I really didn't want to go but a friend kept insisting it saved her friend's life. We'll see. I wish I had the money for the Enterolab testing but money is so tight with all the wasted copays this year. I should've saved that money and just spent it on testing and holistic/naturopathic care. I got very scared this morning as I had diarrhea for first time since starting Enterocort nearly a month ago. It was bright yellow too.

[Leah]

Maybe the oil is not working for you right now. I really do hope you find something that works for you soon!
Leah

[tex]

Hi Brooke,

Be very careful with oil. Any oil is a lubricant, and can/will increase motility.

Also be very careful with naturopathic care. Virtually all naturopaths try to load up their patients with expensive (and totally unnecessary at this point in their treatment) supplements that are virtually guaranteed to make our symptoms worse, rather than better. With MC, the more supplements we take, the less likely we are to recover — it's that simple, believe it or not. After we recover, we can often tolerate supplements that that just made us worse, early on.

MC typically causes the symptoms that you describe (headaches, flu-like feeling, fatigue, depression), but one thing that can make them worse, and is a very common side effect of MC, and also tends to cause irritability, belligerence, etc., is potassium deficiency. It's very common with malabsorption issues. A common remedy, if you can tolerate them, is bananas.

Tex

[Leah]

Potatoes have lots of potassium too

[Gabes-Apg]

Brooke,
When you see the nutritionist, mention that MC is not like other IBD's. The protocol that most practitioners usefor crohns /uc does not work the same for mc.
Also mention the high probability of mast cell/histamine generated inflammation.

As tex mentions, be cautious about supplements etc. don't take any that have lots of ingredients, as it makes it near impossible to determine which ingredient is causing the issue.
Herbal liquids are strong and in alcohol base. Although the alcohol amt is small, it is still enough to cause mc chaos. I have not been able to use any liquid herbs since Dx. (I had used them for 9 years prior to Dx)

Any products you do try, Start on 1/10 - 1/8th dose, and increase the dose every 3-4 days.
Powders and lingual products work better than tablets (they cost more, but you are absorbing them better so you are getting better value IMO)
Double and triple check the inactive ingredients of any product. I have given my nutritionist the list of names for soy from this forum, quite a few of the products she was using had soy. She is now going to stop recommending them.

A good starting point is checking your Vit D3 level, supp wise focus on Vit d3, magnesium, potassium, zinc, Vit c. All of these help reduce inflammation, cell regeneration, balance histamine.

Keep it simple. And softly softly catchee monkey. Be patient, take it slow. Have realistic expectations.
It can take months (years for some) to recover from chronic symptoms.
In supplement protocol, it can take 3 months to fix a deficiency, if you have multiple deficiencies then it can take a while to get the digestion 'on track'