Newbie looking for a bit of help
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Newbie looking for a bit of help
Hi all,
My name is Liz. I am American, but I work overseas as an international school counselor. I was diagnosed last year (June 2017) with Celiac, MC, and in October 2017 with Duhring's. I went gluten free before my colonoscopy, so the Duhring's was the nail in the coffin for Celiac. For two years before my diagnosis, I started having intermittent abdominal cramps. No D, no C, just horrible cramps. It started on Tuesdays. I know, super weird, but I think it had to do with stress/gluten. I traveled on Tuesdays and tended to eat gluten (I was on Paleo before this--then reintroduced the gluten ) The symptoms gradually got worse and I started having trouble sleeping as I would have cramps, bloating, and nausea in the wee hours of the night (3am, usually). By February 2017, I was in constant pain and hardly sleeping. Also in late 2016/early 2017 I started to have some fecal incontinence. In April 2017, the watery, almost continual D started and I finally went to the GI. She did all the right things and all the right tests and I was diagnosed within 2 months.
She prescribed Nexium (after the endoscopy left me with heartburn), Floratil (Saccharomyces boulardii), and probiotics. My symptoms got much better. However, this past year I still have sleepless nights (though much less) and instances of abdominal cramps, bloating, and nausea. I don't have the watery D anymore and most of my stools are Normans, but I do get some loose stools during these flares.
This spring I tapered down my Nexium after reading here that this could be a trigger. I also stopped eating yogurt and any grains (back to Paleo) But the night time pain and daytime bloating is still an issue. I'm currently typing to you at 5:30am and I've been up and reading since 2:30am with pain, bloating, and nausea. I've recently started LDN in hopes of vanquishing my remaining symptoms, but it has only been 14 days and no real symptom abatement.
I've also recently traveled to the US on a visit and picked up some pepto, which I've been using to control this flare, but I can't do the full 8 week pepto therapy as it isn't available in Jordan. I know I was given some food by family members that was not grain-free (amaranth flour, etc.) and due to my family's habits, I may have had some gluten cross-contamination (though no Durhing's reaction, so maybe not), so I think this flare is due to those issues.
Any tips/tricks/ideas anyone has to help resolve my lingering symptoms would be great. I'm thinking of doing the ImuPro 300 test (only one available here) to test for other intolerances and make sure I'm not eating anything triggering. The biggest issue for me is that I live in a developing country where finding substitutes and different foods can be expensive, hard, or impossible.
Thanks in advance for any and all help. I've been reading this forum since my diagnosis and it has been invaluable. I don't know why I waited so long to register.
My name is Liz. I am American, but I work overseas as an international school counselor. I was diagnosed last year (June 2017) with Celiac, MC, and in October 2017 with Duhring's. I went gluten free before my colonoscopy, so the Duhring's was the nail in the coffin for Celiac. For two years before my diagnosis, I started having intermittent abdominal cramps. No D, no C, just horrible cramps. It started on Tuesdays. I know, super weird, but I think it had to do with stress/gluten. I traveled on Tuesdays and tended to eat gluten (I was on Paleo before this--then reintroduced the gluten ) The symptoms gradually got worse and I started having trouble sleeping as I would have cramps, bloating, and nausea in the wee hours of the night (3am, usually). By February 2017, I was in constant pain and hardly sleeping. Also in late 2016/early 2017 I started to have some fecal incontinence. In April 2017, the watery, almost continual D started and I finally went to the GI. She did all the right things and all the right tests and I was diagnosed within 2 months.
She prescribed Nexium (after the endoscopy left me with heartburn), Floratil (Saccharomyces boulardii), and probiotics. My symptoms got much better. However, this past year I still have sleepless nights (though much less) and instances of abdominal cramps, bloating, and nausea. I don't have the watery D anymore and most of my stools are Normans, but I do get some loose stools during these flares.
This spring I tapered down my Nexium after reading here that this could be a trigger. I also stopped eating yogurt and any grains (back to Paleo) But the night time pain and daytime bloating is still an issue. I'm currently typing to you at 5:30am and I've been up and reading since 2:30am with pain, bloating, and nausea. I've recently started LDN in hopes of vanquishing my remaining symptoms, but it has only been 14 days and no real symptom abatement.
I've also recently traveled to the US on a visit and picked up some pepto, which I've been using to control this flare, but I can't do the full 8 week pepto therapy as it isn't available in Jordan. I know I was given some food by family members that was not grain-free (amaranth flour, etc.) and due to my family's habits, I may have had some gluten cross-contamination (though no Durhing's reaction, so maybe not), so I think this flare is due to those issues.
Any tips/tricks/ideas anyone has to help resolve my lingering symptoms would be great. I'm thinking of doing the ImuPro 300 test (only one available here) to test for other intolerances and make sure I'm not eating anything triggering. The biggest issue for me is that I live in a developing country where finding substitutes and different foods can be expensive, hard, or impossible.
Thanks in advance for any and all help. I've been reading this forum since my diagnosis and it has been invaluable. I don't know why I waited so long to register.
Kind Thoughts,
Liz
Liz
Hello Liz,
Welcome to the group. You are probably going to have trouble believing this, but IMO the symptoms you are complaining about are due to a chronic magnesium deficiency, caused by years of malabsorption before and after your celiac diagnosis. IBDs (celiac disease and MC are both IBDs) deplete magnesium and most of the drugs used to treat IBDs deplete magnesium. When cramps or nausea occur during the wee hours of the morning, they are almost surely due to magnesium deficiency, because that's the time of day that we're most likely to run out of magnesium if our daily meals do not contain enough magnesium or we are unable to absorb it properly. Interestingly, stress also depletes magnesium. Magnesium deficiency caused by the drastic hormonal changes during pregnancy, are the cause of morning sickness (nausea), for example. Women who build up their magnesium reserves before that occurs, don't have morning sickness.
The sleepless nights are almost surely due to a chronic magnesium deficiency. Anxiety and depression are primary symptoms of magnesium deficiency. Incontinence is often due to loss of smooth muscle control — another symptom of magnesium deficiency.
Several years ago, I had an allergic reaction to Bactrim, and it depleted what was left of my already too small magnesium reserves. I had many frustrating nights with night sweats, anxiety, and running to the bathroom. The reactions usually started about 2 or 3 am. I almost felt as though I were having panic attacks every night. Either I could't get to sleep in the first place, or I woke up then and couldn't get back to sleep. And it went on and on, night after night. None of my doctors had a clue as to what was causing my symptoms. They suggested an antidepressant. Magnesium deficiency isn't even on their radar. Once I figured out that the problem was caused by magnesium deficiency, and I doubled my magnesium intake, the symptoms all disappeared, virtually overnight.
I would take about 300–400 mg of oral magnesium glycinate and liberally use magnesium lotion or oil on your legs, arms, belly, or wherever you prefer to put it, and/or soak your feet in Epsom salt, or add Epsom salt to your bath water. You should be much improved by tomorrow, and you should be completely free of those symptoms in a few days.
I hope this resolves your symptoms. It should.
Once again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. You are probably going to have trouble believing this, but IMO the symptoms you are complaining about are due to a chronic magnesium deficiency, caused by years of malabsorption before and after your celiac diagnosis. IBDs (celiac disease and MC are both IBDs) deplete magnesium and most of the drugs used to treat IBDs deplete magnesium. When cramps or nausea occur during the wee hours of the morning, they are almost surely due to magnesium deficiency, because that's the time of day that we're most likely to run out of magnesium if our daily meals do not contain enough magnesium or we are unable to absorb it properly. Interestingly, stress also depletes magnesium. Magnesium deficiency caused by the drastic hormonal changes during pregnancy, are the cause of morning sickness (nausea), for example. Women who build up their magnesium reserves before that occurs, don't have morning sickness.
The sleepless nights are almost surely due to a chronic magnesium deficiency. Anxiety and depression are primary symptoms of magnesium deficiency. Incontinence is often due to loss of smooth muscle control — another symptom of magnesium deficiency.
Several years ago, I had an allergic reaction to Bactrim, and it depleted what was left of my already too small magnesium reserves. I had many frustrating nights with night sweats, anxiety, and running to the bathroom. The reactions usually started about 2 or 3 am. I almost felt as though I were having panic attacks every night. Either I could't get to sleep in the first place, or I woke up then and couldn't get back to sleep. And it went on and on, night after night. None of my doctors had a clue as to what was causing my symptoms. They suggested an antidepressant. Magnesium deficiency isn't even on their radar. Once I figured out that the problem was caused by magnesium deficiency, and I doubled my magnesium intake, the symptoms all disappeared, virtually overnight.
I would take about 300–400 mg of oral magnesium glycinate and liberally use magnesium lotion or oil on your legs, arms, belly, or wherever you prefer to put it, and/or soak your feet in Epsom salt, or add Epsom salt to your bath water. You should be much improved by tomorrow, and you should be completely free of those symptoms in a few days.
I hope this resolves your symptoms. It should.
Once again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
HI Liz,
I just want to welcome you here after all your time of reading on this site
I completely agree with Tex....
I do think if you can get ahold of some Betaine HCL you can kick that Nexium to the curb.....you don't need less stomach acid you need the right amount in there to break down your food...this will help A LOT in the gas and bloating area and you won't have such mad dashes to the bathroom either.
Stick with the S Boulardii and one other thing to consider would be rx.silver.com Nano Silver......if you have any lingering virus, bad bacteria, mold, fungus, Candida yeast etc.....this will slowly remove it from your lifestyle and I bet you will see a big difference in all your symptoms.
Maintain VitD3 (unless you are getting good body exposure in Jordan) and Magnesium (400mg a day spread out should work fine).
I just want to welcome you here after all your time of reading on this site
I completely agree with Tex....
I do think if you can get ahold of some Betaine HCL you can kick that Nexium to the curb.....you don't need less stomach acid you need the right amount in there to break down your food...this will help A LOT in the gas and bloating area and you won't have such mad dashes to the bathroom either.
Stick with the S Boulardii and one other thing to consider would be rx.silver.com Nano Silver......if you have any lingering virus, bad bacteria, mold, fungus, Candida yeast etc.....this will slowly remove it from your lifestyle and I bet you will see a big difference in all your symptoms.
Maintain VitD3 (unless you are getting good body exposure in Jordan) and Magnesium (400mg a day spread out should work fine).
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Hi all,
Thank you for the replies.
I'm so glad I joined and posted.
Thank you for the replies.
Tex, I'm most certainly going to try this! I'm pretty sure oral magnesium and Epsom salts are available here (though the lotion/oil might be tricky). I don't have trouble believing this at all as I'm sure my gluten issues started when I was very young and created deficiencies like my anemia. It's just that doctors don't really test for deficiencies other than B12 or anemia, usually, so it's hard to know. (My B levels are within normal, but low normal). Thank you for the advice!I would take about 300–400 mg of oral magnesium glycinate and liberally use magnesium lotion or oil on your legs, arms, belly, or wherever you prefer to put it, and/or soak your feet in Epsom salt, or add Epsom salt to your bath water. You should be much improved by tomorrow, and you should be completely free of those symptoms in a few days.
Thanks Erica! After reading the forum, VitD was one of the things I've been thinking about. Because I am in Jordan now (lots and lots of sun available, though not always utilized) I am going to have my VitD tested and supplement accordingly. As for the Nano Silver, I did try that a few years ago while still in the states and I didn't tolerate it very well. This was while I was on strict Paleo and not having GI or many symptoms at all.Maintain VitD3 (unless you are getting good body exposure in Jordan) and Magnesium (400mg a day spread out should work fine).
I'm so glad I joined and posted.
Kind Thoughts,
Liz
Liz
I agree with you that's probably what happened. Remember gluten sensitivity causes magnesium deficiency which then magnifies the problem. And the serum magnesium test that doctors routinely use is so inaccurate that it's next to useless because only about 1 or 2 % of our magnesium is located in our blood serum. The red blood cell (RBC) magnesium test is much more useful.
If you ever visit the Dead Sea, it's arguably the world's greatest magnesium bath. If they will allow you to take any water from the lake home with you, I'll bet bottled Dead Sea water would make a good substitute for oil or lotion.
Tex
If you ever visit the Dead Sea, it's arguably the world's greatest magnesium bath. If they will allow you to take any water from the lake home with you, I'll bet bottled Dead Sea water would make a good substitute for oil or lotion.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, that is really interesting! We don't go to the Dead Sea to get in very often, but we do go to hike all of the valleys around it. Maybe I'll bring home a bottle next time I'm there. We do eat Dead Sea salt, but we don't eat enough to supplement, I'm sure.If you ever visit the Dead Sea, it's arguably the world's greatest magnesium bath. If they will allow you to take any water from the lake home with you, I'll bet bottled Dead Sea water would make a good substitute for oil or lotion.
I have noticed the LDN starting to work now that I'm on 3mg. The peripheral symptoms (joint ache, fatigue, brain fog) seem to be decreasing quite a bit, which is very helpful. Hopefully the combo of magnesium, D3, LDN, and Floratil will be the magic combo!
Thanks again, Tex, for all your help!
Kind Thoughts,
Liz
Liz