When will the weight loss stop?

[Patricia]

I have been on the elimination diet since Christmas. Initially sweet potatoes, lamb, olive oil, salt, pepper, and bananas. That stopped the #6 and #7 stools and brought me #4 and #5s on the Bristol stool scale. I successfully added wild cod, tuna, overcooked broccoli and cauliflower, regular potatoes, rice, and as of yesterday, cashew butter. In February I was noticing that my bowel movements were switching to #5 and #6s and increasing in frequency despite adhering to this strict diet. About three weeks ago there were a few instances where I was wondering if I was developing some intolerance or even allergy to sweet potatoes, I just had this weird feeling in my throat/airways after eating them (remember that I have been allergic to carrots for many years, instantly reacting with swollen lips and this weird feeling in my throat/airways). So I switched from the sweet potatoes to regular potatoes as my mainstay. Interestingly enough, after leaving away sweet potatoes, I became constipated for the first time since my diagnosis in fall and there were days where I couldn't go at all. I haven't had sweet potatoes since and I am not sure yet if and when I should try again. My bowel movements have been more normal again the last two days, so hopefully my gut adjusted to the diet change.

I started taking Jean's suggestion of the Metanx equivalent from the Professional Supplement Center and have tolerated it well. Thank you, Jean! I have been taking it for 10 days now and I have barely had the pins and needles in my arms and legs. Does it work that fast? Or is this the placebo effect? Anyway, I am happy it is working.

However, for the past two weeks I have had this sensation in my airways. It is hard to describe, sometimes slightly painful, sometimes not painful but I just feel it when I breathe. It makes me want to cough, but coughing (dry cough) won't relieve it, it actually makes me feel it more or it makes it hurt, so I try not to cough. I sleep completely fine at night, don't feel it when I wake up in the morning, but as soon as I get up and walk around, the feeling is back. It feels like an irritation of the airways. Growing up I had terrible seasonal allergies with asthma. The nightly asthma in spring/summer as a child changed to exercise-induced asthma as a young adult and for the past twenty years it has been pretty much non-existent with very few exceptions. My seasonal allergies have not been that bad the last few years, either, and I have not had a cold in two or three years. I don't know what this is?

Even though it feels like I am starting to be able to manage the intestinal aspect of LC (thanks to all of you and the wonderful advice I found on this website), I am still losing weight. I am 5'6" and went from 140 lbs in fall to 120 lbs now. I lost most of it while having terrible diarrhea. But the weight loss is continuing on the elimination diet, just slower, I think right now about 2 lbs per month. Why is that the case? I would have thought that normal bowel movements meant good absorption of nutrients? Is the inflammation decreasing the absorption? Is there an increased caloric need while trying to heal? And when will this weight loss stop??? I am using lots of olive oil on everything. I don't drizzle it, I literally pour it over everything and try to have as much of it as I can. Until last year I always had to watch my weight, exercise tons so I would not gain weight, and now I try everything to not lose more.
For those of you who lost weight initially, when did the weight loss stop?

I added avocado last week, thinking that this would add extra calories. I did not have any intestinal issues, but it made the rash on my face worse. And I don't think the tuna that I added a few days ago helped in that regard. My dermatologist had declared in January that it was a typical cortisone rash and it would disappear once I was off the Budesonide. Well, I have been off the Budesonide for two months and the rash has not disappeared. And it obviously seems to get worse with certain foods, which makes me think of mast cells/histamine.
Do you think the respiratory issues are also due to inflammation or histamine issues?

Regarding the other recent tests: the TSH came back normal, I am still waiting for the results of the second urine cytology (it has been more than two weeks), the ultrasound of bladder and kidneys was normal. The urology consult will be in two weeks.

Thanks so much in advance for your input!!!

Love, Patricia

[tex]

My bowel movements have been more normal again the last two days, so hopefully my gut adjusted to the diet change.

However, for the past two weeks I have had this sensation in my airways. It is hard to describe, sometimes slightly painful, sometimes not painful but I just feel it when I breathe. It makes me want to cough, but coughing (dry cough) won't relieve it, it actually makes me feel it more or it makes it hurt, so I try not to cough. I sleep completely fine at night, don't feel it when I wake up in the morning, but as soon as I get up and walk around, the feeling is back. It feels like an irritation of the airways. Growing up I had terrible seasonal allergies with asthma. The nightly asthma in spring/summer as a child changed to exercise-induced asthma as a young adult and for the past twenty years it has been pretty much non-existent with very few exceptions. My seasonal allergies have not been that bad the last few years, either, and I have not had a cold in two or three years. I don't know what this is?

That sounds as though it might be histamine issues. I don't know how far along the trees are in PA, but here in Central TX tree pollen levels are already high. Tree pollen doesn't bother me as much as weeds (in the late summer and fall), but they bother me more these days than they did years ago. Unfortunately, just as my susceptibility to pollen returned (as described in the following paragraph), we had a record year for oak pollen, and after that I became sensitive to tree pollen (which was a new experience for me). Before MC, I usually didn't have throat congestion with allergy reactions, only watery eyes, runny nose, or sometimes a rash. But these days, I usually have throat congestion/thick phlegm along with allergic reactions. And sometimes (when I don't have congestion) I have a cough for no reason, and coughing does not help anything. Usually a drink of water will suppress the need to cough for me. But I haven't noticed any throat pain with it.

My experience with classic pollen allergies was that they stopped when my MC was active (this fits my theory that the immune system has a one-track mind, and concentrates on what it perceives to be the biggest threat at the moment, as described in chapter 10 (An Immune System Quirk) of the MC book. IOW, my immune system ignored my pollen allergies for years. I also didn't catch colds or other viruses. As I began to heal, those allergies began to return, and I began to occasionally catch viruses, if I wasn't careful to avoid them. So IMO, you can consider the return of pollen allergies to be a sign that your digestive system is healing.

But the weight loss is continuing on the elimination diet, just slower, I think right now about 2 lbs per month. Why is that the case? I would have thought that normal bowel movements meant good absorption of nutrients? Is the inflammation decreasing the absorption? Is there an increased caloric need while trying to heal? And when will this weight loss stop???

Have you estimated your average daily calorie intake? When we eat fewer foods, we have to eat more of those foods in order to keep our calorie intake constant. And when those foods contain less sugars, we are even more likely to be restricting our calorie intake without even realizing it. When I was having tests at the clinic every couple of weeks or so, one time I decided to just not eat anything between tests, so that I wouldn't have to go through the cleanout process before a colonoscopy. My weight went from about 140 to 120 during those 2 weeks, and I developed a severe case of persistent hiccups. All I ate was a little clear jello, water, and an occasional 7-Up or Sprite. As soon as I began to eat again, I gained some of the weight back, but it took a lot of healing before I gained a significant amount of weight. And to make matters worse, the GI doc's sergeant-at-arms (disguised as a nurse) insisted that I had to use the cleanout solution anyway.

Remember that it takes time for the gut to heal. Just because our symptoms stop does not mean that we are healed. Healing can go on for several years for adults. Kids can heal in a year or less, but adult intestines heal slowly.

Do you think the respiratory issues are also due to inflammation or histamine issues?

I would suspect that they're due to histamine issues, as discussed above.

You're most welcome.

Love,
Tex

[Greengoddess]

I have exactly the same respiratory symptoms which are hard to put into words! I agree with Tex, they are probably histamine issues.

[Sheila]

Hi Patricia,
It does seem that you may have histamine issues. I had been taking antihistamines (Zyrtec at night, occasional Claritin during the day, plus nose and eye drops) and I know I felt better for it. Since being diagnosed with Sjogrens Syndrome, I had to stop all antihistamine. It's been a couple of months and I'm coughing, sneezing, often slightly nauseous etc etc. The Neti pot helps a bit but I'm resigned to having to live with allergies again.

My diet is modified Paleo and I'm also pretty thin. A high protein diet is pretty filling and calorie laden but without any carbs, the pounds just keep coming off. I've added a few carbs to stabilize my weight. If you go to the Recipe Section, you'll find a recipe for Morning Glory Muffins, also called Paleo muffins. There are high protein and contain few carbs, very satisfying and most of us seem to tolerate them. I seem to tolerate almonds and eat them and pistachios without too many issues.

Sheila W

[Greengoddess]

Interesting about the hiccups, Tex. I get them sometimes and other sort of lesser forms of them like a sharp intake of breathe. I don't have heart problems or anything so more mystery.

[tex]

These days, I don't have any problem with hiccups very often, but they seem to show up sometimes if/when my stomach has been empty for much longer than usual.

Tex

[Hopeful]

Sheila, I have Sjorgren's also. This is the first winter that I haven't had a constant dry cough and my dry mouth/eyes are much improved also. That despite taking antihistamines every day. Antihistamines have helped so much with my diarrhea. I really think that my Sjorgren's has been helped by the NAC, which I take everyday. I know that you mentioned that you're reluctant to use it (sulfur?).

I see that some folks with Sjorgren's are using LDN. Have you tried this and has it helped?
Chris

[Sheila]

I'm glad the NAC works for you. I had high hopes but because of sulfur issues, I can't take it. I may try it again when I feel I have more control over the methylation issues. Since stopping the antihistamines, my eyes and mouth aren't as dry but allergies are awful. I'll look into LDN, not sure what that is. Thanks for the heads up. If I ever find something that helps, I'll post. Lord knows, we need all the help we can get.

Sheila W

[Patricia]

Hi Tex,

When I was writing the initial post there was still snow on the ground. I had a close look at the trees today and the first buds are visible, but only when looking from close up. And the weather channel declares that there is no tree pollen yet, but who knows?

I just feel that there are so many weird symptoms with this disease...and the physicians are totally unaware of any of them being connected to each other. I have been complaining about pain in my right groin area for months. My PCP, my gastroenterologist, and the physical medicine specialist who I was referred to by my PCP all declared it was arthritis of my hips. They sent me for an x-ray of both hips...well, the radiologist declared that the hips looked completely normal, absolutely nothing wrong with them. I still think it's from the colitis, even though my doctors don't think so.

Have you estimated your average daily calorie intake? When we eat fewer foods, we have to eat more of those foods in order to keep our calorie intake constant. And when those foods contain less sugars, we are even more likely to be restricting our calorie intake without even realizing it.
Tex

That's a very good point. No, I have not estimated my daily calorie intake. I should do that! And yes, I used to eat lots of cheese from Europe (think creamy French and Italian cheeses), and I had a very sweet tooth, make it a few sweet teeth....obviously now all pastries are out, I have not had sugar or chocolate in a few months. Also, I used to have a glass of red wine a few times a week with dinner, stopped that in September. I'll have to try with half a glass of wine and see what happens...so yes, the diet definitely looks very different compared to before being diagnosed.
I can't believe you didn't eat for two weeks!! And they still gave you the solution, how awful!

Thank you, Sheila. The Paleo muffins sound so delicious! I'll be happy to give them a try

Interesting that you have the same respiratory symptoms, Greengoddess. Thanks for letting me know.
It's so good to hear from other people dealing with the same things. It makes me feel a lot less alone!!!

Love, Patricia

[UkuleleLady]

Good idea from Tex about calorie intake. I signed up on myfitnesspal (free) and tracked my calories to make sure I was getting 2000 for a few weeks. It's hard to get that many calories without grains...many days I didn't make it. Added fats helps.

Just an idea I just remembered.

[Lilja]

Hi Tex,

I have been complaining about pain in my right groin area for months. My PCP, my gastroenterologist, and the physical medicine specialist who I was referred to by my PCP all declared it was arthritis of my hips. They sent me for an x-ray of both hips...well, the radiologist declared that the hips looked completely normal, absolutely nothing wrong with them. I still think it's from the colitis, even though my doctors don't think so.

Love, Patricia

Patricia,
I started having pain in my groin two years before D and all the other symptoms started. My doctors were clueless, I had x-rays as well, but they found nothing.

The groin pain have been going on for 5 years, and disappeared just recently as my gut has been healing. The pain in the groin has been replaced by sciatic pain with pins and needles in my butt, hips and legs. I don't know if there is a connection between my CC and the sciatic phenomenom, but I suspect there is.

I'm now tapering off Entocort, after having been on E for 9 months.

I wish someone could find out whether all this is connected, but as Tex once stated in one of his posts; the C in Collagenous Colitis stands for connective tissue.

Lilia

[Patricia]

Good idea from Tex about calorie intake. I signed up on myfitnesspal (free) and tracked my calories to make sure I was getting 2000 for a few weeks. It's hard to get that many calories without grains...many days I didn't make it. Added fats helps.

Just an idea I just remembered.

Thanks, UkuleleLady! I had a look at the website and was amazed at all the foods listed when I did a few food searches. I will track it for a while to see where I am.

I started having pain in my groin two years before D and all the other symptoms started. My doctors were clueless, I had x-rays as well, but they found nothing.

The groin pain have been going on for 5 years, and disappeared just recently as my gut has been healing. The pain in the groin has been replaced by sciatic pain with pins and needles in my butt, hips and legs. I don't know if there is a connection between my CC and the sciatic phenomenom, but I suspect there is.

I find the pains that come and go the weirdest thing with this disease. But that is exactly how it is for me. Last summer it was the front of the hips that hurt, then it was the ball of the right foot for a few months, a few weeks ago that stopped hurting, but now the left foot hurts in the exact same spot. The rib pain and the pain on the right side of my abdomen were absolutely awful in fall, they are gone now. The groin pain has its ups and downs, it will hurt for a while, then disappear for a week or two. I wish I hadn't written that the pins and needles went away already, because they came back yesterday It started again with my right thigh sore and heavy like after a major workout, and then the pins and needles came. I used to have pins and needles in the right arm and a cold hand 4 years ago; at that time they did nerve conduction study and EMG, everything was normal. I had surgery on my right shoulder 8 years ago, so 4 years ago I went to my shoulder surgeon. He diagnosed a thoracic outlet syndrome, prescribed PT, and it went pretty much away. But now it is both arms, both legs, even my back; more pronounced on the right side. I don't know why everything is more pronounced on the right side, maybe because I always sleep on my left side since the surgery? I don't know. The itching is worse, too, on the entire body, the rash on the right side of my face is worse. I really think it is all connected. If it'd be just the arms, then I would think of an issue with the cervical spine; if it was just the legs, the lumbar spine. But pins and needles on the entire body, itching on the entire body, rash, it makes me think, like you said a while ago in a different post, Lilia, that it's some system error. I will continue to take my vitamin B6, B9, B12, D, apply the magnesium, work on my diet, which is improving, and hope for progress that will take care of the system error, that is causing all these weird symptoms and pains, moving around in my body. I have to believe that as I am getting tired of showing up at the doctor's office with the "mal du jour" or the "mal du month". Heck, I used to see my PCP once every 1-2 years for a check-up, she would ask how I was, and I would say I am in excellent health, nothing to report.....

Love, Patricia

[lisaw]

Hi Patricia:

Avocado is high histamine, which could be why the rash flares when you have it. As you heal more, you can prob handle higher histamine foods, but maybe keep the portions lower for now. It's very frustrating to add a new food, that would be beneficial for adding more calories, and feel you are reacting. Good you do ok with potatoes and rice, if you aren't already, try to have carbs with every meal, to stop the weight loss. Plantains are a good versatile starch, that can be cooked in different ways depending on whether ripe or not as ripe (ripe is sweeter, less ripe more like a potato). Unfortunately, they are not alwaysreadily available, as not all grocery stores carry them. They also take a long time to ripen. As far as adding back wine, keep in mind that wine is very high histamine. Red is higher than white, so might start with occasional glass of white. I can now have a glass of wine sometimes, but find I do better with mixed drinks. I always make sure to take an antihistamine that day, if I know I'll be having a drink.

Lisa

[tex]

Patricia,

Since Lisa mentioned histamine (and she is very likely right on target), have you seen any of the comments/discussions I've posted about histamine levels in fruit, meat, etc,? Most information about histamine content varies widely among some sources. But that's because they don't seem to realize that the ripeness level (or storage age) determines histamine levels.

I don't have the lab data to back this up (because apparently no one has ever researched it), but I am convinced that fruits (such as bananas, for example) that are just barely ripe do not have a very high histamine level. They certainly don't bother me, but very ripe bananas do. Bananas ripen quickly, and every day as they continue to ripen, the histamine level increases exponentially (not just linearly — but again I can't back this claim up with research data). And this theory should apply to various foods that are regarded as high-histamine foods.

IOW, if we start with a fresh chicken, or thaw a fresh frozen chicken, the histamine level should be low. But the longer that chicken (or fish, or whatever) lies around in the refrigerator (or even worse, on a countertop), the higher the histamine level climbs. The same goes for leftovers. Freezing (at deep freeze temperatures) stops the histamine development (at least close enough for most practical purposes), but histamine levels will continue to rise for foods left at room temperature, or stored in a refrigerator. So if my theory is correct, then fresher avocados will have much lower histamine levels than older/fully ripe avocados.

Tex

[Lilja]

Patricia,

The hardest thing to do was to get out of the car. I would crumble out of pain, and had to try several times before I could get out.

Weird :-)

Lilia