April 2015: Two years’ anniversary on a GF/DF diet

[Lilja]

Hi all,

Background:
Gastroscopy in 2010 stated that I have CC. I had had explosive D for 7 months, up to 20 visits to the bathroom per day, incl nighttime. Was given Entocort for 3 months, but D came back as soon as I stopped taking them.

2011 and 2012 were horrible years, and I didn’t want to stay on corticosteroids, so I had constant D and no medication at all.

In April 2013 I went GF and DF, and the D stopped, but I still had loose stools with 3-4 BMs in the morning.

In May 2014, the D came back at full force, and this time I also had up to 20 visits to the bathroom. I was persuaded to take 3 mg Entocort, and I still take them, now tapering off and down to 1 capsule every 3. day.

After having joined this board in August 2014, I also quit eating eggs and soy. I have also reduced the fruit intake, and all my veggies are well cooked. I eat a lot of fish, some well cooked meat and a lot of bone broth, cooked rice, but my stools are still loose, with 3-4 BM during the morning. And I have a lot of cramps and pains in my lower back, hips and leg calves (which I have read is typical for UC and Crohn's disease...).

Fortunately, I have a lot more energy than I had one year ago, probably due to a shrinked diet, higher intake of vitamins, especially vitamin D, and the three vitamin Bs: Methylcobalamin B12, Methylfolate and the active form of B-6, cod liver oil, magnesium, zink, selenium and a lot of vitamin C.

I have not taken the Enterolab tests, since I learned about it while on Entocort and while GF and DF, and also because it is fairly expensive, and I’m also afraid that I will not be able to interpret the test results.

Next week I will be down to 1 capsule of Entocort every 4. day, and some time in April I will be off Entocort completely.

In case D should come back, I need to have a plan that I can discuss with my GP:

A) Ask for a capsule endoscopy; my smaller intestines have never been diagnosed
B) Test for Pernicious Anemia; due to muscle atrophy, weight loss and leg pains, plus a father that had PA

I’ve read here on the board, that MC also may sit in the smaller intestine, though gastroenterologists claim that this is not the case, so I thought it could be a good idea to ask for a capsule endoscopy.

If A) and B) come back negative and I’m still having a bad time, I would wait for the Entocort effect to be out of my body, and maybe even reintroduce gluten, dairy, eggs and soy (!) and do the Enterolab tests.

I’m still working on the list, and would love to have comments from you, as to what more I should be testing.
Lilja

[tex]

I’ve read here on the board, that MC also may sit in the smaller intestine, though gastroenterologists claim that this is not the case, so I thought it could be a good idea to ask for a capsule endoscopy.

The "pill" camera does not do microscopic observations. It only takes images of the digestive tract in the same way that the human eye would see. Therefore, while it can often display possible signs of cancer, or lesions of Crohn's disease and/or UC, it cannot detect MC.

Also, vitamin C commonly causes D for many of us, especially while we are still recovering. Both the natural form (from citrus fruit) and the synthetic form (ascorbic acid made from corn) caused me to react when I was still recovering.

Tex

[CathyMe.]

Hi all,

Background:
Gastroscopy in 2010 stated that I have CC. I had had explosive D for 7 months, up to 20 visits to the bathroom per day, incl nighttime. Was given Entocort for 3 months, but D came back as soon as I stopped taking them.

2011 and 2012 were horrible years, and I didn’t want to stay on corticosteroids, so I had constant D and no medication at all.

In April 2013 I went GF and DF, and the D stopped, but I still had loose stools with 3-4 BMs in the morning.

In May 2014, the D came back at full force, and this time I also had up to 20 visits to the bathroom. I was persuaded to take 3 mg Entocort, and I still take them, now tapering off and down to 1 capsule every 3. day.

After having joined this board in August 2014, I also quit eating eggs and soy. I have also reduced the fruit intake, and all my veggies are well cooked. I eat a lot of fish, some well cooked meat and a lot of bone broth, cooked rice, but my stools are still loose, with 3-4 BM during the morning. And I have a lot of cramps and pains in my lower back, hips and leg calves (which I have read is typical for UC and Crohn's disease...).

Fortunately, I have a lot more energy than I had one year ago, probably due to a shrinked diet, higher intake of vitamins, especially vitamin D, and the three vitamin Bs: Methylcobalamin B12, Methylfolate and the active form of B-6, cod liver oil, magnesium, zink, selenium and a lot of vitamin C.

I have not taken the Enterolab tests, since I learned about it while on Entocort and while GF and DF, and also because it is fairly expensive, and I’m also afraid that I will not be able to interpret the test results.

Next week I will be down to 1 capsule of Entocort every 4. day, and some time in April I will be off Entocort completely.

In case D should come back, I need to have a plan that I can discuss with my GP:

A) Ask for a capsule endoscopy; my smaller intestines have never been diagnosed
B) Test for Pernicious Anemia; due to muscle atrophy, weight loss and leg pains, plus a father that had PA

I’ve read here on the board, that MC also may sit in the smaller intestine, though gastroenterologists claim that this is not the case, so I thought it could be a good idea to ask for a capsule endoscopy.

If A) and B) come back negative and I’m still having a bad time, I would wait for the Entocort effect to be out of my body, and maybe even reintroduce gluten, dairy, eggs and soy (!) and do the Enterolab tests.

I’m still working on the list, and would love to have comments from you, as to what more I should be testing.
Lilja

Hi Lilja,
Although I have no advice I wanted to say how glad I am that things are going so well for you. Also, Good luck getting off the entocort.

[Gabes-Apg]

Great news on the progress....

Take it slow and steady... Good healing takes a few years.

[Lilja]

Thank you Tex, Cathy and Gabes!

Tex: Ok, I will stop taking ascorbic acid for a while and see if it helps.

By what instruments can one look at the small intestines, like when you suspect inflammation, or when you want to see if there is villous atrophy? Is this where they use upper endoscopy ?

Lilja

[brandy]

Hi Lilja,

I'm another one that can't tolerate vitamin C supplements. I figure I have to get it in my vegetables.

Brandy

[tex]

By what instruments can one look at the small intestines, like when you suspect inflammation, or when you want to see if there is villous atrophy? Is this where they use upper endoscopy ?

Yes. Upper endoscopy will usually allow a GI specialist to examine part of the duodenum (the top section of the small intestine. Except for patients who have a longer-than-normal colon, doctors can usually examine the terminal ileum when performing a colonoscopy exam. But that still leaves most of the small intestine in the middle (including all of the jejunum, out of reach. The length varies by the individual, but the total length of the small intestine averages about 22–23 feet (6.7–7.0 meters).

Tex

[Lilja]

By what instruments can one look at the small intestines, like when you suspect inflammation, or when you want to see if there is villous atrophy? Is this where they use upper endoscopy ?

Yes. Upper endoscopy will usually allow a GI specialist to examine part of the duodenum (the top section of the small intestine. Except for patients who have a longer-than-normal colon, doctors can usually examine the terminal ileum when performing a colonoscopy exam. But that still leaves most of the small intestine in the middle (including all of the jejunum, out of reach. The length varies by the individual, but the total length of the small intestine averages about 22–23 feet (6.7–7.0 meters).

Tex

Thank you once again, Tex. What would I do without you and all the knowledge I find here?

So, most of the small intestine and all of the jejunum is out of reach? Hmm, I hope science will invent instruments to reveal all these meters that now lie in the dark.

Lilja

[tex]

Lilja,

Barium X-rays, can be used to look for blockages or restrictions (stenoses), fissures, etc., and can be used to check flow rates (motility) through the entire intestinal tract. CT scans and ultrasound scans can also be used to look for blockages, stenoses, wall thickness changes, etc. But none of these methods will allow a microscopic view of any part of the intestines, so they can't be used to help diagnose MC. Only biopsy samples will allow microscopic examination.

Tex

[Lilja]

Hi again,

I have been so desperate as to my leg pains and leg cramps, that I had to do something. I haven't been able to stand upright at the kitchen counter for more than a couple of minutes at the time. Going shopping has been quite a challenge, and I'm always looking for a chair or a bench to sit down.

My appointment with my GP is not until May. And even if I would mention the leg issue to him now, he would be clueless. I know him.

Well, I googled "leg pain causes", and of course all the articles were talking about magnesium and B vitamins. But the last article mentioned iron deficiency. Iron?!

What could I lose? So, I've been taking iron tablets for 6 days now. On the third day, almost all of the pain and cramps were gone! Today my legs are super!

I have had a long walk today, 60 min on snowy and icy roads, and I didn't have to stop one single time, and I forgot to look for a place to sit down.

I don't know, but this is too good and too soon to be coincidental. And, I haven't made any changes in my diet or my supplement intake, other than these iron tablets.

"Happy Feet Lilia"

[tex]

Hi Lilia,

That's good news that you've eliminated those leg cramps. Iron deficiencies should show up on CBC blood test results. Don't your doctors include tests for iron whenever they order blood tests? They should. Or maybe one of your doctors ordered iron tests but no one bothered to look at the results.

You are very fortunate if you can take supplemental iron tablets without causing abdominal cramps or other digestive system problems. Most of us are not able to take iron supplements without problems. We have to get our iron from our food or by cooking in cast iron pots, or from blackstrap molasses.

It's somewhat common for women who have pernicious anemia to also have iron deficiency, but that's not the case for men.

Good for you for figuring out the problem.

Tex

[Lilja]

Hi Lilia,

That's good news that you've eliminated those leg cramps. Iron deficiencies should show up on CBC blood test results. Don't your doctors include tests for iron whenever they order blood tests? They should. Or maybe one of your doctors ordered iron tests but no one bothered to look at the results.

You are very fortunate if you can take supplemental iron tablets without causing abdominal cramps or other digestive system problems. Most of us are not able to take iron supplements without problems. We have to get our iron from our food or by cooking in cast iron pots, or from blackstrap molasses.

It's somewhat common for women who have pernicious anemia to also have iron deficiency, but that's not the case for men.

Good for you for figuring out the problem.

Tex

I'm quite aware that I cannot stand on iron supplements for a long time. I will have to closely monitor my own well being, and if C or D + + should occur, I would stop. Maybe a month's supplementation would be enough to reach a comfortable level. And then I'll see.

I haven't had a complete CBC blood test since April 2013, and that was when I went to a functional medicine center (but they were only interested in my money, and very costly, never explained my different test values, why they would prescribe certain supplements, etc. so I quit them), and my levels of iron and ferritin were ok at that point. But since then I may have developed a deficiency, given constant D and a possible malabsorption after April 2013.

My current GP is only interested in medications, not digging into the root cause of my issues. And he is in his 30's...

For the time being I'm only enjoying the fact that my legs don't hurt. I can work, stand upright for a long time, walk and sleep without pains

Lilia