Hi everyone,
I am a 19yo female recently diagnosed with CC. My GI prescribed me 3mg Entocort/day to help with the symptoms.
Does anyone suffer from Hashimoto's disease, kidney lesions, and absence of/irregular menstruation in addition to MC? I'm seeing 5 specialists right now (nephro, GI, neuro, psychiatry, and internal med; waiting to see endo) but they don't seem to communicate with each other. I'm wondering if any of this could be related? I also have pretty bad brain fog (so bad that my doctor sent me to see neuro who ordered many tests including an MRI; I'll get results in a week), get frequent skin infections, and have very high protein in my urine. I have antibodies for Vasculitis and 2 different types of antibodies for IBD (I forget the names), as well as Hashimotos. Blood work has shown high sedimentation rate, high white blood cell count and high platelet count for over a year. There is a lot of autoimmune problems in my family so I wouldn't be surprised if it were something in that group.
Any insights into this? Even my nephrologist is stumped as to why I have kidney lesions now. Any information or coping strategies would be awesome.
Thank you!
Thyroid/kidney/menstrual issues, brain fog and CC
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taylordlowe
- Posts: 3
- Joined: Mon Jun 06, 2016 9:55 am
- Location: Montreal
Hi Taylor,
Welcome to our Internet family. Despite doctors' tendency to deny that any or all of those issues are associated with CC (because no one has ever published any medical research on the topic), our experience is that in most cases they are indeed associated. According to our own internal survey among the members for example, we are approximately 7 times as likely to have thyroid problems as someone in the general population.
Brain fog is also a very common symptom of CC. Skin infections — very common with CC. Even the vasculitis is very likely associated with the inflammation in your intestines.
Are you taking a calcium supplement (without taking a magnesium supplement), or otherwise ingesting a lot of calcium in your diet? The kidney lesions may be related to this.
The menses issues could be due to a combination of a vitamin D deficiency and a magnesium deficiency. Both are very, very common with IBD patients.
AI diseases promote additional AI issues unless the intestinal inflammation is stopped. On this discussion board we stop the inflammation by making diet changes that prevent the production of antibodies. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Despite doctors' tendency to deny that any or all of those issues are associated with CC (because no one has ever published any medical research on the topic), our experience is that in most cases they are indeed associated. According to our own internal survey among the members for example, we are approximately 7 times as likely to have thyroid problems as someone in the general population.
Brain fog is also a very common symptom of CC. Skin infections — very common with CC. Even the vasculitis is very likely associated with the inflammation in your intestines.
Are you taking a calcium supplement (without taking a magnesium supplement), or otherwise ingesting a lot of calcium in your diet? The kidney lesions may be related to this.
Association of magnesium deficiency with the blood pressure-lowering effects of calcium.Signs of magnesium deficiency, calcium deposits in the kidneys, and histological lesions were observed in groups on a high-calcium diet receiving normal and low levels of magnesium. Thus a lowering of blood pressure by calcium supplementation, without concomitant magnesium supplementation, was accompanied by biochemical and histological abnormalities in this animal model.
The menses issues could be due to a combination of a vitamin D deficiency and a magnesium deficiency. Both are very, very common with IBD patients.
AI diseases promote additional AI issues unless the intestinal inflammation is stopped. On this discussion board we stop the inflammation by making diet changes that prevent the production of antibodies. 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.
You may find this article to be helpful in understanding these associations:
Could Magnesium Deficiency Lead To Vasculitis?
and this article, which is referenced in the first article:
Magnesium and the inflammatory response: potential physiopathological implications.
Tex
Could Magnesium Deficiency Lead To Vasculitis?
and this article, which is referenced in the first article:
Magnesium and the inflammatory response: potential physiopathological implications.
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.
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taylordlowe
- Posts: 3
- Joined: Mon Jun 06, 2016 9:55 am
- Location: Montreal
Thank you so much Tex, I really appreciate your help. As a university student its been really difficult coping with all of these medical issues. I will take a look at the articles you've linked to. Im currently trying to figure out my supplements and get them in balance, so I will definitely consider adding magnesium. I currently take vitamin D, A, Fish Oil and Probiotics.
I've never taken Calcium supplements and my diet isn't especially high in calcium, so I don't think this is contributing to the kidney issue. Should I consider adding calcium to my list of supplements with magnesium? I know long term use of Entocort could lead to Osteoporosis...
I'm currently trying to cut out gluten, and will try to cut out dairy later on. I tried to do the autoimmune protocol diet once but it really had a negative effect on me (my diarrhea was so bad I almost went to the hospital, and, surprisingly, I gained approximately 7 pounds in a week; Inflammation I'm guessing). During the AIP I ate many vegetables which tend to be a trigger for me, so maybe this was the cause. I find tomatoes (especially tomato sauce or canned tomatoes), along with peppers and green vegetables tend to be the worst for me.
It's really interesting that skin infections and thyroid issues are associated with CC; I had no idea! I hope this and the brain fog can clear up a little as I start the gut-healing process. I've looked at a lot of the dietary recommendations on this page and I am planning to incorporate them slowly (as to not 'shock' my system).
Taylor
I've never taken Calcium supplements and my diet isn't especially high in calcium, so I don't think this is contributing to the kidney issue. Should I consider adding calcium to my list of supplements with magnesium? I know long term use of Entocort could lead to Osteoporosis...
I'm currently trying to cut out gluten, and will try to cut out dairy later on. I tried to do the autoimmune protocol diet once but it really had a negative effect on me (my diarrhea was so bad I almost went to the hospital, and, surprisingly, I gained approximately 7 pounds in a week; Inflammation I'm guessing). During the AIP I ate many vegetables which tend to be a trigger for me, so maybe this was the cause. I find tomatoes (especially tomato sauce or canned tomatoes), along with peppers and green vegetables tend to be the worst for me.
It's really interesting that skin infections and thyroid issues are associated with CC; I had no idea! I hope this and the brain fog can clear up a little as I start the gut-healing process. I've looked at a lot of the dietary recommendations on this page and I am planning to incorporate them slowly (as to not 'shock' my system).
Taylor
Almost everyone has more than enough calcium in their diet, even if their diet is restricted. Adequate amounts of both magnesium and vitamin D are the key to preventing osteoporosis.Taylor wrote:Should I consider adding calcium to my list of supplements with magnesium? I know long term use of Entocort could lead to Osteoporosis...
Residents of the developed countries that have the highest levels of calcium intake tend to have the highest rates of osteoporosis. This seems impossible until the magnesium and vitamin D epidemics in those countries are considered.
Regarding the foods that you listed as problems for you . . . yes, with MC we have to avoid all raw vegetables and all citrus fruits while we are recovering. Tomatoes are a citrus fruit. It's best if we avoid or severely limit most other fruits also, because fructose is not our friend while our intestines are inflamed.
All vegetables and any small amounts of fruits that are eaten should be peeled (to minimize the fiber) and over-cooked (to make them easier to digest) We also have to minimize fiber intake because fiber and raw vegetables and fruit are like sandpaper to a gut that is already inflamed. After we have been in remission for a while and have had some time for healing, we can begin to slowly add some of those foods back into our diet. Bananas are a single exception that most of us can still tolerate raw while we are recovering. Spicy foods (including peppers and spices in general) should be avoided until after we have been in remission for a while. Salt is OK.
Yes, learning to control this disease involves a fairly steep learning curve and we have to take it a day at a time and learn as we go. The good news is that most of us find that as our digestive system heals, most of our other symptoms from satellite issues slowly fade away also. CC/LC/MC is a rather cruel teacher, but it forces us to adopt a much healthier lifestyle that helps to prevent other health issues in the future.
Incidentally, 3 mg of budesonide per day is a third of the normal dose. It is very, very unlikely that such a small dose will provide any benefits for you unless you are one of the very few who are extremely sensitive to it. I don't understand why she or he would prescribe such a small dose. The usual dose is 3 capsules of 3 mg each per day.
Also, the American Gastroenterological Association Institute no longer recommends probiotics as part of a treatment program for MC. They issued new guidelines in December, 2015. We have maintained for many years that almost none of us benefit from probiotics, and for many of us, probiotics tend to make our symptoms worse.
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.
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taylordlowe
- Posts: 3
- Joined: Mon Jun 06, 2016 9:55 am
- Location: Montreal
Thanks again Tex!
You have given me much more info than I received from my GI. I was told to stay away from processed foods (which I do anyways), but that was it! I will definitely be taking your suggestions about the fruits and vegetables. Its strange how something that is so good for the average person can wreak havoc on us. I will also be adding Magnesium to my supplements, and stop spending so much money on probiotics!
I figured that this was a particularly low dose as well. I've been on it approximately 3 weeks now and have seen a little improvement, but nothing substantial. I have a follow up in a couple months and will ask for an increase in dosage. I do have good days where I only have 3 or 4 BM's a day, but then I also have days like today where it is so bad that I'm afraid to leave the house (incontinence has been a problem for me). I take Immodium in emergency situations, but it tends to make me very bloated and uncomfortable so I avoid it when I can.
I see my Nephro and Neuro next week so we will see if there is anything that could be worsening my symptoms. Hopefully all is well with my brain and kidneys *fingers crossed*!
You have given me much more info than I received from my GI. I was told to stay away from processed foods (which I do anyways), but that was it! I will definitely be taking your suggestions about the fruits and vegetables. Its strange how something that is so good for the average person can wreak havoc on us. I will also be adding Magnesium to my supplements, and stop spending so much money on probiotics!
I figured that this was a particularly low dose as well. I've been on it approximately 3 weeks now and have seen a little improvement, but nothing substantial. I have a follow up in a couple months and will ask for an increase in dosage. I do have good days where I only have 3 or 4 BM's a day, but then I also have days like today where it is so bad that I'm afraid to leave the house (incontinence has been a problem for me). I take Immodium in emergency situations, but it tends to make me very bloated and uncomfortable so I avoid it when I can.
I see my Nephro and Neuro next week so we will see if there is anything that could be worsening my symptoms. Hopefully all is well with my brain and kidneys *fingers crossed*!
Some types of magnesium are poorly absorbed and cause D (especially magnesium oxide — it's a laxative), in larger doses. Most of us take chelated magnesium (magnesium glycinate) because it's well absorbed and does not cause D. During recovery I would limit the dose to about the RDA (300–400 mg), and scatter it during the day. If it seems to cause problems, topically-applied magnesium oil or lotion can be used effectively, and they will not affect the digestive system.
After your digestive system has done some healing you will be able to slowly reintroduce many/most of the fruits and vegetables that you must avoid while recovering.
I assume that you're not taking any NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, or a few other medications that are notorious for causing MC.
You're very welcome and good luck with your appointments.
Tex
After your digestive system has done some healing you will be able to slowly reintroduce many/most of the fruits and vegetables that you must avoid while recovering.
I assume that you're not taking any NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, or a few other medications that are notorious for causing MC.
You're very welcome and good luck with your appointments.
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.