CC: Loss of weight and muscles

[Lilja]

Hi Lilja, I have MC and also lost muscle mass. I have hair tests and was involved in a genetic research study. Jon

Thank you! What was the result of the hair tests?

I lose a lot of hair too

[Lilja]

It is daunting!

The most natural thing in life, food, has suddenly become a problem. The things we took for granted, when we served ourselves from the dishes and from the refrigerator, is not an evident thing anymore.

Talk about losing control, talk about moving to another country, with new rules, new food, new language - and not to forget... All the abbreviations, the new medical terms and different diagnosis. All this new knowledge...

I can't fully express how much I appreciate all your input here, especially the ones that provoke me a bit, in direction of "don't make this a problem, don't make this a question of succeeding, don't get angry at yourself when you fail, this is not the World Championship in Cross Country Skiing" (an analogy very important to a Norwegian!)

There is a thousand things to take into consideration, our lives are being turned upside down.

But! Life should be lived also (directly translated from norwegian).

That is so easy to forget.

I have now decided to take it easy, lower my shoulders, enjoy the thought of what I actually CAN eat, and live for today

[gluten]

Hi Lilja, I am sending in a new hair sample for testing and will send you the results. Jon

[brandy]

Hi Lilja,

Welcome!

I've really struggled with upper body strength the last several years. (age 53) I now have stamina and can walk 2-1/2 miles with no problem but am still working on the upper body strength.

This was my life without the pain in legs or pain in back:

tingling, unsteady gait, nausea, brainfog, no appetite, slept a lot, pain in my legs and in my lower back, could not follow a simple conversation, could not concentrate on the simplest tasks… I felt like I was sitting in a bubble, just registering what was going on around me.

When I had your symptoms it was rough, rough, rough. It does get better.

I think my muscles just atrophied. My experience is that it takes awhile to build back the strength and honestly I am still working on it. You definitely learn patience with this disease!

Your diet appears to be very safe for us. I'm curious how many eggs you were eating a week when your second MC flare started? Be aware that about 25-30% of us react to eggs. (I think Tex has the exact numbers.) Gluten is worst, followed by dairy, followed by soy, followed by eggs in order of what is worst for us statistically. Just a thought to consider.

Also you may already be aware of this but avoiding dairy for us means avoiding cheese and yogurt in addition to milk and butter. The casein in the dairy is the problem for us. (I was reluctant to give up yogurt and needlessly suffered for months.)

Tex's book is helpful. Info is in top right of forum.

Brandy

[Lilja]

Hello everybody!

I thought I would give you a little update:

I had my first colonoscopy in May 2010 (after 7 months D). The latest was in October 2012. I have only had one D flare-up since 2010, this summer, that lasted for 2,5 months, hence the colonoscopy appointment today.

A young, vigorous and fun endoscopeur (do you say that in English?) to whom I dared talk to. I asked him if it was possible to take a mast cell account. "No, I have never done that, we don't do that here in the hospital"... But, then I asked him to take as many biopsies as possible. We laughed a lot during the colonoscopy, and he counted aloud each time he took a bit of my intestines , 10 all together.

He found three polyps, which he removed. They were very small, and he could almost guarantee that they were benign.

I have never been tested for celiac, but due to the D's, I started a GF/DF diet in April 2013, which made my life a lot easier. My son has been following my health issues from aside, and initiated a test for the HLA-DQ genes. He has the HLA-DQ8 gene, but he is in great shape with no health issues.

I told the gastrolog doctor about my awful pain in my lower back, sciatic pain, piriformis pain, and pain in my legs. "There is no connection between your CC and the symptoms you mention", was the answer. Really?

The gastrolog doctor will send the test results to my GP. And if there is something new to report, my GP will call me. If there is nothing new, doctors in Norway don't call their patients. Well, I won't complain, since we have free medical care system, but, I will ask my GP to do further tests, on my recommendation.

I have not yet figured out which tests, but I will read further here on the board, and maybe I will get some ideas.
Lilja

Hi Brandy:
I oversaw your question. I eat approx 2 egg yolks per day, eggs from ecological hens. Lilja

[tex]

I told the gastrolog doctor about my awful pain in my lower back, sciatic pain, piriformis pain, and pain in my legs. "There is no connection between your CC and the symptoms you mention", was the answer. Really?

That's what all GI specialists say, but most of us here disagree, based on our own personal experiences, because many of us here have lower back pains especially, when we are reacting, and the pain goes away when the reaction stops. Also, many of us have leg and foot cramps at night, due to magnesium deficiency or potassium deficiency. This is not the same as leg pains however, because it's due to a mineral or electrolyte deficiency, not due to a nerve problem. While the cramps are not specifically part of the MC reaction, they are a result of the malabsorption problem that MC causes, so they are a secondary symptom of MC.

Apparently either you or your husband have a DQ-8 gene, because your son had to inherit the gene from one of you. For people who have a celiac gene, the disease often doesn't develop until later in life.

Tex

[Lilja]

Thank you, Tex.

All my pain in lower back, sciatic etc are constant. A few hours prior to the colonoscopy, after having emptied my bowel, the pain went away.

Lilja

[tex]

Lilja,

That's an interesting observation. It sounds as though when your gut is full (and possibly bloated with some gas), it may be somehow causing pressure against your sciatic nerve. Otherwise the pain shouldn't go away when your bowels are empty.

Tex

[Lilja]

Thank you Tex,

I haven't found out how we quote one another's posts, but her it goes:

At my last appointment with my chiropractic (yes I go see a chiropractic each week because of all the pain, despite the fact that I think the pain is due to my CC).

While waiting for my appointment, I met an acupuncturist in his office, who said that she had reason to believe that she could help me get rid of both my gut problems and my back/leg problems (the latter in cooperation with the chiropractic treatment).

I will have to think about that one, since chiropractics and acupuncturists are very expensive and not part of the free medical system, and I am not very fond of needles...

Have you heard of anyone that have had help from an acupuncturist in colitis issues?

She seemed rather convinced, and my chiropractic says she is one of the best in the country. He is also convinced that "everything hangs together with everything" (directly translated from an norwegian expression).

However, if it is the back that causes trouble to the gut or vice versa, he is not sure. I have had lower back pain since 1973 and also shattered my tale bone three times (falling, as a result of my unsteady/unstable gait).

What do you think?

I would appreciate your answer.
Lilja

[tex]

I haven't found out how we quote one another's posts, but her it goes:

Just click on the "Quote" button in their post. The system will open a window with the quoted message, and you can write your message below the quote, and then submit it.

Have you heard of anyone that have had help from an acupuncturist in colitis issues?

Yes, many members here have found that acupuncturists can help with many of the perpheral (or satellite) issues associated with MC, such as nausea, and aches and pains in various locations. But the acupuncturist you met, no matter how qualified, will not be able to resolve the MC itself. Many chiropractors and acupuncturists in this country also claim that they can resolve IBDs, but it simply isn't true. They can help to relieve some of the symptoms (IOW, they can make you think that they are resolving the problem), but they cannot stop the inflammation. Only the proper diet changes can do that.

He is also convinced that "everything hangs together with everything" (directly translated from an norwegian expression).

Well, I agree with him there, but if he actually understood the problem, he would recognize that the gut is the source of virtually all chronic disease that occurs anywhere in the body. The old saying that "you are what you eat" is true, because that determines what happens to every part of the body, in the long run.

The digestive system even has it's own brain/control system — the enteric nervous system, and it coordinates everything with the main brain in the head through the central nervous system. But the enteric nervous system controls all digestive processes, not the main brain, as many people believe.

Speaking of tail bones, years ago I slipped on a wet floor while unloading a truck, and apparently cracked my tailbone (I never had it x-rayed, so I have to guess that it was cracked). It refused to heal. For about a year and a half, it bothered me almost constantly. One day I had to have emergency abdominal surgery, and while recovering, I couldn't work for at least 6 weeks. Since I had to mostly lie still, and rest, my tail bone finally healed. Sometimes we just have to take off and rest, in order to heal.

Tex

[Heady]

I too get sciatic type pain in lower quadrant back top of buttock. Pain does subside when bowels are empty. Sometimes the pain is so bad it causes pain through entire leg. I do get relief sitting in an Epsom salts hot bath. FYI that also causes relaxation allowing for easier elimination. My GI says it is not related to MC. My GP says it's all connected as with nervous system.

[Lilja]

Lilja,

Welcome, I'm fairly new here but this board has saved my life. You will love everyone, they are so giving of their time and advice. Please hang in there and keep reading.

Happy healing,
Connie

Thank you!

I used to visit a discussion forum for people who believe in old traditional food, fermenting veggies and legumes, fermenting all corn, only milk directly from the cow, homemade butter, dried and salted meat etc. A real orthodox food regime. I had to quit, because it took to much time to drive out on the country side to collect milk that had not been pasteurized or homogenized, and I finally thought the whole regime was a bit too strict. I finally went over to a GF and DF but that's another story

But, one of the discussion members was an old nutrition- and heilpraktiker, and he was so strict... He claimed that people with stomach issue ALWAYS had too little stomach acid. The main cause was not too much acid, but too low stomach acid. If we only could get the stomach acid straight, our digestion would be fine...

His advice was to drink organic apple cider acid together with every meal; 3 tablespoons in a small glass of water.

I don't drink it with every meal, just in the morning, but it gives me a warm feeling and I think it has helped me. His advice is that you drink this to every meal, and once it does not give you a warm feeling in the body, you just stop taking it, your digestion will then be healed (!) It has not healed my colitis, but I think it helps me digest the food much better.

Has anyone in here tried this?

[Lilja]

Lilja,

That's an interesting observation. It sounds as though when your gut is full (and possibly bloated with some gas), it may be somehow causing pressure against your sciatic nerve. Otherwise the pain shouldn't go away when your bowels are empty.

Tex

I have now discovered that my sciatic pain, leg pain and lower back pain are being caused by Entocort.

I am now seponating Entocort, and I am down to 1 tablet every second day, and the pain disappears the longer time has gone since I took a tablet.

That is so relieving to know! I thought I had developed arthritis ...

[tex]

The Entocort label lists the same sort of "generic" side effects as many meds, and the label lists the specific side effects generally attributed to corticosteroids. But despite the fact that it lists neurological side effects as "less common", neurological symptoms seem to be the ones most commonly reported by members here.

That said, I believe that this is the first time that someone has reported their sciatic pain fading away as they tapered their Entocort dose.

Thank you for sharing that information.

Tex

[Lilja]

Hi,

I took my last Entocort-tablet four days ago, but I still experience awful sciatic pain, so I'm sorry to say that my assumption was not correct and just accidental.

But, most important is that D has not shown up yet. I try not to think of D and enjoy being off the medicine. My doctor put in an electronic prescription, but I have not collected it. His idea was that I should stay on Entocort, and take 1 tablet each 3rd day.

Fingers crossed

PS: I have gained 2 kilos since I wrote the first message, and my upper arms are definetely nicer to look at, they have become more "firm".

Lilja