Hello all,
So I had my endoscopy today - 4 hour ordeal. When the doc came out to see me, he said that he found a few polyps and said he does not see a sign of celiac disease. He does not think that is the issue. My husband then asked him why I have lost nearly 10 percent of my body weight to which he replied, "I don't know - (shrugged his shoulders) maybe she is worried about you." (because my husband just went through cancer treatments) Then he asked me if I was depressed. Actually, he wasn't wrong about that - I'm depressed because I can't find a doctor who understands this disease! I told him I discontinued the Uceris because after 3 days, I was having more bowel movements, making it nearly impossible to work. He told me that I should not have stopped them and told me to go back on them for at least 2 weeks. He then said that I probably need another stool sample for malabsorption. As far as the nausea - (that was my main reason for the endoscopy) - that wasn't even brought up. He has no idea why I'm nauseous.
I am beyond frustrated. I feel so weak and can't even look at myself anymore- down to 99 pounds. I now have an appointment with yet another doc in January. Jean is going to help me get the tests with Enterolab next week. I hope that will shed some light on this.
Sorry for all the whining - I just had to vent. It makes me feel good to be talking to people who actually understand this disorder.
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barbieAnn,
Sorry about your endoscopy and MD. Unfortunately your experiences seem fairly representative. I recall the trauma of first dropping below 100 pounds and realizing that my doctors weren't going to be of any help in figuring out why.
Hope your EnteroLab results are as helpful to you as mine were to me. Although it took months for me to see significant, continuing daily progress, there was noticeable improvement almost immediately. The constant “gurgling” and painful cramping became much less frequent right after I removed the “offending” foods. The bland diet finally gave my gut a chance to calm down. It was nowhere near healed yet, but no longer getting worse every day—just every so often—for the first 6-7 months—and hardly at all since. This weekend will be 10 months since I received my EnteroLab results and I’m really kind of amazed at how effective the diet has been. (Along with the magnesium brine + D3).
Of course the holidays make any kind of discipline more challenging. Best of luck to you!
PS—I went to college on LI—in the Dark Ages—when the campus was still surrounded by potato fields.
Sorry about your endoscopy and MD. Unfortunately your experiences seem fairly representative. I recall the trauma of first dropping below 100 pounds and realizing that my doctors weren't going to be of any help in figuring out why.
Hope your EnteroLab results are as helpful to you as mine were to me. Although it took months for me to see significant, continuing daily progress, there was noticeable improvement almost immediately. The constant “gurgling” and painful cramping became much less frequent right after I removed the “offending” foods. The bland diet finally gave my gut a chance to calm down. It was nowhere near healed yet, but no longer getting worse every day—just every so often—for the first 6-7 months—and hardly at all since. This weekend will be 10 months since I received my EnteroLab results and I’m really kind of amazed at how effective the diet has been. (Along with the magnesium brine + D3).
Of course the holidays make any kind of discipline more challenging. Best of luck to you!
PS—I went to college on LI—in the Dark Ages—when the campus was still surrounded by potato fields.
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Hi barbieAnn:
I think you should fire your GI doctor if that's what they told you about Celiac disease. They need to do a biopsy and send it to a lab to diagnose it, you don't just look at it and say it's not there. If you plan on being very strictly gluten free for the rest of your life, then a proper Celiac diagnosis might not be a requirement for you. Many people need the motivation of a proper diagnosis to stick to it. Anyway, just chaps me that a GI would treat you that way.
My prayers are with you for recovery and strength.
I think you should fire your GI doctor if that's what they told you about Celiac disease. They need to do a biopsy and send it to a lab to diagnose it, you don't just look at it and say it's not there. If you plan on being very strictly gluten free for the rest of your life, then a proper Celiac diagnosis might not be a requirement for you. Many people need the motivation of a proper diagnosis to stick to it. Anyway, just chaps me that a GI would treat you that way.
My prayers are with you for recovery and strength.
-Kelly
I thank God that He led me to this forum and I thank Him for you.
Heart Palpitations 12/2013
Urticaria 2015
Symptoms for 5 years prior to 6/2016 diagnosis CD & LC
I thank God that He led me to this forum and I thank Him for you.
Heart Palpitations 12/2013
Urticaria 2015
Symptoms for 5 years prior to 6/2016 diagnosis CD & LC
I’ve never tried epsom salts or ointment. Since the brine has worked for me I’ve stuck with that.
Magnesium testing is kind of useless. I’ve had a number of different ones, all basically showing that I’m low but not seriously deficient. The most detailed and expensive one was the ExaTest, however the results were not helpful. I was told to continue taking 1400 mg of mag glycinate daily to maintain normal serum levels. Even at this level though I continued to get excruciating muscle cramps—mostly legs, but also hands and feet, and some facial twitches, until I’d been using the magnesium brine for a few months. I’ve since been able to decrease oral mag to 800 mg, but if I go any lower for more than a day or two, or forget to apply the magnesium oil, the cramps recur. I’ll try to get the testing info together and post it.
I graduated from SUNY at Stony Brook in 1970 and last met up with old friends/roommates there in 2008. Boy how things had changed! Still love it out there though.
Magnesium testing is kind of useless. I’ve had a number of different ones, all basically showing that I’m low but not seriously deficient. The most detailed and expensive one was the ExaTest, however the results were not helpful. I was told to continue taking 1400 mg of mag glycinate daily to maintain normal serum levels. Even at this level though I continued to get excruciating muscle cramps—mostly legs, but also hands and feet, and some facial twitches, until I’d been using the magnesium brine for a few months. I’ve since been able to decrease oral mag to 800 mg, but if I go any lower for more than a day or two, or forget to apply the magnesium oil, the cramps recur. I’ll try to get the testing info together and post it.
I graduated from SUNY at Stony Brook in 1970 and last met up with old friends/roommates there in 2008. Boy how things had changed! Still love it out there though.
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Stony Brook has definitely changed - my neighborhood is getting very crowded because SBU is suddenly getting very popular.
That's funny that you've mentioned cramping because I quite often get excruciating cramps in my feet, legs, calves. I'm a bit hesitant about taking the oral magnesium because I've read if you take too much, it can cause diarhhea and I really don't need any more of that! I have to look back at my posts because Tex actually advised on how much to take.
That's funny that you've mentioned cramping because I quite often get excruciating cramps in my feet, legs, calves. I'm a bit hesitant about taking the oral magnesium because I've read if you take too much, it can cause diarhhea and I really don't need any more of that! I have to look back at my posts because Tex actually advised on how much to take.
Hi Barbieann,
I take an oral Magnesium by Kirkman, which I do quite well with. It's called Kirkman Magnesium Bisglycinate Chelate - I learned about it through this forum - I've heard others use one through Doctor's Best.
I've put a link to the Kirkman one below - I take it three times a day, along with two 1,000 IU of Vit D3. It has helped my cramping immensely. I will apply topical Mo Maggie lotion sometimes also before bed - I find it a little tingly on my skin and a little tacky so I don't like to use it during the day.
My daughter was accepted at Stony Brook and we planned a trip to visit it - she fell in love with another school prior to our visit so we never made it there but I've heard wonderful things about it.
https://supplementfirst.com/Kirkman-Mag ... elate.html
Best wishes to you -
Pam
I take an oral Magnesium by Kirkman, which I do quite well with. It's called Kirkman Magnesium Bisglycinate Chelate - I learned about it through this forum - I've heard others use one through Doctor's Best.
I've put a link to the Kirkman one below - I take it three times a day, along with two 1,000 IU of Vit D3. It has helped my cramping immensely. I will apply topical Mo Maggie lotion sometimes also before bed - I find it a little tingly on my skin and a little tacky so I don't like to use it during the day.
My daughter was accepted at Stony Brook and we planned a trip to visit it - she fell in love with another school prior to our visit so we never made it there but I've heard wonderful things about it.
https://supplementfirst.com/Kirkman-Mag ... elate.html
Best wishes to you -
Pam
The magnesium glycinate doesn’t seem to impact diarrhea, however its questionable whether much of it is absorbed when we are inflamed. I’d been hesitant about trying the magnesium oil, but when it stopped a calf cramp in progress on my first try, I was sold. It does itch and burn etc. but I’ve learned to fit it into my routine so I can shower or rinse it off before it drives me too crazy. I use LifeFlo , however Swanson’s and Asutra are about the same. I also found that increasing Vitamin D3 from 2,000 to 10,000 IU daily helped with the cramping too.
There’s a regular serum blood test for magnesium, but its very unreliable since our blood contains only a tiny % of the magnesium in our bodies. I’m checked regularly though, and am generally just under or minimally above the usual reference range—even though I take so much of it.
The RBC (red blood cell) magnesium test is allegedly more accurate than the standard blood test, however my results—twice—were not technically low, but way below optimum from what I’ve read here and elsewhere.
The more detailed “analysis” is through EXATest. Like EnteroLab it’s a private outfit, however they require that their kit (saliva swab) be ordered, administered and returned by an MD, and my PCP had no objections. Amazingly the entire cost (+/- $600 in 2014) was covered by Medicare, but I don’t know how it’s treated by other insurance. My PCP had advised me to do the test while supplementing at my usual levels, which was 1400 mg of mag. citrate, 10 MEQ of Rx potassium, and 400 mg of calcium citrate daily. The test results merely told me to continue at these levels but to switch to mag. glycinate which I did. Unfortunately none of the (many) doctors I’ve seen since, have had a clue as to how to interpret the results, which included specific ratios for 6 minerals. In retrospect I think it would have been more useful to do the test without supplementation, to see what my baseline levels were really like.
Here’s a link to the EXATest website:
http://www.exatest.com
Finally, the days are getting longer again!
Hope things start looking up for you soon.
There’s a regular serum blood test for magnesium, but its very unreliable since our blood contains only a tiny % of the magnesium in our bodies. I’m checked regularly though, and am generally just under or minimally above the usual reference range—even though I take so much of it.
The RBC (red blood cell) magnesium test is allegedly more accurate than the standard blood test, however my results—twice—were not technically low, but way below optimum from what I’ve read here and elsewhere.
The more detailed “analysis” is through EXATest. Like EnteroLab it’s a private outfit, however they require that their kit (saliva swab) be ordered, administered and returned by an MD, and my PCP had no objections. Amazingly the entire cost (+/- $600 in 2014) was covered by Medicare, but I don’t know how it’s treated by other insurance. My PCP had advised me to do the test while supplementing at my usual levels, which was 1400 mg of mag. citrate, 10 MEQ of Rx potassium, and 400 mg of calcium citrate daily. The test results merely told me to continue at these levels but to switch to mag. glycinate which I did. Unfortunately none of the (many) doctors I’ve seen since, have had a clue as to how to interpret the results, which included specific ratios for 6 minerals. In retrospect I think it would have been more useful to do the test without supplementation, to see what my baseline levels were really like.
Here’s a link to the EXATest website:
http://www.exatest.com
Finally, the days are getting longer again!
Hope things start looking up for you soon.
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
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I've been using magnesium glycinate for years. It's never caused d when others did. I've always taken 600 mg of elemental magnesium. Since I am in remission I assume it's being absorbed but it did also help with leg muscle cramps before remission. I've never used the lotions. Sometimes we just have to experiment to figure out what works. I started using the magnesium glycinate long before it became a topic of interest on this forum. I figure why fix what's not broken. It seems to be working, always has.
Jean
Jean
One of the most important things I have learned is that conventional medicine does not have much or anything to offer me when it comes to fixing my gut. It was only by following the advice I got on this forum that I was able to get things under control. By the time I landed up here I had already given up entirely on doctors having an answer so I don't even have an official diagnosis. I figured why bother with an invasive test when I could just figure out what to eat and what not to eat. It's worked like a charm. The only GI doctor i ever saw told me I didn't have celiac and I should eat more fiber even though I told him that I hadn't had any gluten in 5 years and fiber made things worse. Clearly I got his monologue and not a conversation. I did much better figuring it out on my own.
Jean
Jean
Hi BarbiAnn,
I’m sorry if I’m asking you to repeat yourself, but have you tried taking 6 mg a day of Budesonide or Uceris daily to see how you do? I took Budesonide for almost 5 months and there was definitely a point where 9mg was too much. I dropped to 6mg and when more constipation and cramping came I dropped to 3mg daily (then of course eventually titrated off). There’s nothing magical about 9mg. Most people start there but MC is such an ‘individual’ disease- what works for you may not be the norm. (And those of us living with MC know there is no norm. Only GI docs insist this is a predictable disease. We all know better).
Carol
I’m sorry if I’m asking you to repeat yourself, but have you tried taking 6 mg a day of Budesonide or Uceris daily to see how you do? I took Budesonide for almost 5 months and there was definitely a point where 9mg was too much. I dropped to 6mg and when more constipation and cramping came I dropped to 3mg daily (then of course eventually titrated off). There’s nothing magical about 9mg. Most people start there but MC is such an ‘individual’ disease- what works for you may not be the norm. (And those of us living with MC know there is no norm. Only GI docs insist this is a predictable disease. We all know better).
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
CAROL -
I originally started with the 3; 9mg pills every morning. I felt great for 2 or 3 days, I was so happy thinking that the medicine was working, I wasn't nauseous, had an appetite, no stomach pains, energy etc - but then after the 3rd day I suddenly went downhill. More and more trips to the toilet - morning and evening incontinence, nausea - the whole nine yards. So I stopped the meds due to the symptoms getting worse. The next GI doc I went to, put me on Uceris. I did tell him about my experience with Budesonide, but he went ahead and prescribed Uceris. So when I went on the Uceris, the exact same thing happened to the day! After being on it and feeling great for 3 days, the diarrhea started increasing, incontinence began so I stopped again.
The other day, after my endoscopy, he came into the recovery room and told me that the test came out negative - and then asked me about the Uceris and I told him what had happened. He told me that I should not have stopped taking the drug, that it usually takes at least 2 weeks for it to work - and that 3 days was not enough time to see if it was doing its job. The problem is that I have to work, and I could not work if I would have continued taking that drug with the symptoms I was getting. I already spent half the afternoon at my job in the bathroom and finally had to go home. But honestly, the past few weeks, even off of the drug, I have been having more frequent episodes. And the tenesmus is there 24/7.
JEAN - I will be in touch next week!
I originally started with the 3; 9mg pills every morning. I felt great for 2 or 3 days, I was so happy thinking that the medicine was working, I wasn't nauseous, had an appetite, no stomach pains, energy etc - but then after the 3rd day I suddenly went downhill. More and more trips to the toilet - morning and evening incontinence, nausea - the whole nine yards. So I stopped the meds due to the symptoms getting worse. The next GI doc I went to, put me on Uceris. I did tell him about my experience with Budesonide, but he went ahead and prescribed Uceris. So when I went on the Uceris, the exact same thing happened to the day! After being on it and feeling great for 3 days, the diarrhea started increasing, incontinence began so I stopped again.
The other day, after my endoscopy, he came into the recovery room and told me that the test came out negative - and then asked me about the Uceris and I told him what had happened. He told me that I should not have stopped taking the drug, that it usually takes at least 2 weeks for it to work - and that 3 days was not enough time to see if it was doing its job. The problem is that I have to work, and I could not work if I would have continued taking that drug with the symptoms I was getting. I already spent half the afternoon at my job in the bathroom and finally had to go home. But honestly, the past few weeks, even off of the drug, I have been having more frequent episodes. And the tenesmus is there 24/7.
JEAN - I will be in touch next week!
Hi Barbie Ann,
I hear you. I also had to work while flaring and managing horrid nausea. I agree with the others who said you could be reacting to the med itself, in which case a lower dose won’t help you.
As far as nausea, I had to take a PPI for awhile and that helped, then I was able to get off that and switch to Zantac, an H2 histamine blocker. If I took it a night that helped the morning nausea. What made the biggest impact on my nausea was acupuncture. In 2 Sessions it was gone and I continued acupuncture (spacing appointments further apart) for another 4-5 Sessions. I was good for more than a year, then went back periodically, as needed. We were also treating motion sickness and sinus issues too. I highly recommend it. No side effects and your gut doesn’t have to absorb anything.
Take care- Carol
I hear you. I also had to work while flaring and managing horrid nausea. I agree with the others who said you could be reacting to the med itself, in which case a lower dose won’t help you.
As far as nausea, I had to take a PPI for awhile and that helped, then I was able to get off that and switch to Zantac, an H2 histamine blocker. If I took it a night that helped the morning nausea. What made the biggest impact on my nausea was acupuncture. In 2 Sessions it was gone and I continued acupuncture (spacing appointments further apart) for another 4-5 Sessions. I was good for more than a year, then went back periodically, as needed. We were also treating motion sickness and sinus issues too. I highly recommend it. No side effects and your gut doesn’t have to absorb anything.
Take care- Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Have you tried cholestyramine or colesevelam, BarbieAnn? There are several threads about it in here, and it did wonders for me before I figured out all my main triggers. I used up to 16 g (4 packets a day) of cholestyramine.
There are several ways of action for the bile acid binders. First of all they bind excess bile which often contributes to the D. in MC. It’s also a bulking agent which slows things down. Researchers have speculated that it might bind allergens and toxins as well.
—Tor
There are several ways of action for the bile acid binders. First of all they bind excess bile which often contributes to the D. in MC. It’s also a bulking agent which slows things down. Researchers have speculated that it might bind allergens and toxins as well.
—Tor
Life's hard and then you die