Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Real protein is better but I add this to broth sometimes.
My hair stopped falling out after I went into remission. Now my hair and nails are great!
If you are not having D can you get off of the mesalamine?
Hey Brandy, thanks for clearing that up..
Although I haven't had D in a while, I think it's still to early, to stop the mesalamine. I have budesonide coming, but don't want a steroid, unless I have a bad flare. I've only been on strict diet since Dec. 1st 2017. Too many stories of coming off budesonide, only to have symptoms return.
Really, really normal BM this morning, it's scary, waiting for the other shoe to drop
Years ago, my diagnosing GI prescribed Asacol. I took it for a few months and noticed my hair was starting to thin. When I received my diagnosis, a google search didn't reveal much but I did find the early version of this message board. My D wasn't getting much better even on a gluten free diet. Someone on the board mentioned that Dr. Fine would respond to questions sent via email. I provided my symptoms including the thinning hair. He recommended I stopped taking Asacol and continue the GF diet. He also said Asacol can cause D for some individuals. After I stopped taking it, the hair loss stopped and slowly got thicker. The D finally stopped some months later.
That was in 2003, fast forward to 2007. I started taking Cymbalta for pain and my hair started to thin. The medication was helping, so I didn't want to stop or change. I mentioned the hair loss to the prescribing doctor and he said selenium "might" help with the hair loss. I started taking selenium twice a day. Again the hair loss stopped but this time my hair didn't get much thicker until I stopped taking the Cymbalta in 2011.
I'm not sure if Dr. Fine responds to emails anymore. I mentioned the hair loss to my local pharmacist after starting the Cymbalta. He looked up both medications and said according to the information he had available hair loss was a rare side affect of both medications.
Regarding home-made bone broth... what are your thoughts on purchasing powder forms? The reason I ask is that, while I eat meat, I have developed a strong disliking to handling it, specifically a whole chicken and then dealing with all the bones, etc. It's making me a bit sick to my stomach even thinking about it. Do you think the powder form would be alright?
I am having a tough time getting hooked up with a nutritionist that does vitamin / mineral deficiency lab testing, specifically one that has a "tag" online indicating they have experience with folks with colitis. I did find one nutritionist that does food sensitivity testing. She does "MRT" testing. Can anyone provide their thoughts on this MRT testing vs. the Enterolab? Should I just order the Enterolab myself and keeping looking for a nutritionist that could work with me based on the Enterolab results I receive? Or... is the Enterolab test easy enough for a "newbie" to read and understand?
Frankly, I doubt that you will be able to locate a nutritionist who is familiar with MC. The MRT test (IMO) is of little use because it is so insensitive (has so many false negatives and false positives). Because of that it is way overpriced for any benefits that it might offer.
The EntroLab tests are much more accurate and reliable and come with a long, detailed analysis of your results. And if that's not enough, we will be happy to interpret the results for you and suggest guidelines.
IMO the commercial bone broth products are far inferior to homemade. They may be better than nothing, though, but I can't make any specific recommendations because I haven't tried any of them. Someone else may be able to help.
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.
O.K. I did not realize that there would not be many nutritionists familiar with MC. I'm actually not finding that many nutritionists in my area period, but I need to find SOMEONE to go to. I will, however, not make the appointment with the nutritionist that does the MRT test.
Tex, another question I have: I read on-line that many hair analysis tests warrant providing way too much hair to do a proper hair analysis for "deficiencies". One individual even said in her review that she sent her test back to the company she ordered it from on-line because she was already thinning too much (as I am) to spare that much hair. Do you think blood tests would suffice? I would, at this point, like to get things moving and am wondering if I should just go back to my GP and order all the necessary blood work to get results on my vitamins, minerals, hormones, etc. and then meet with a nutritionist after that.
One more question, as I mentioned in a previous post, I have been on estrogen (HRT) therapy for almost 10 years (due to early menopause and my ob-gyn telling me that because of my small stature I HAD to be on estrogen to prevent "shriveling up" and getting osteoporosis). I read yesterday that folks on birth control, estrogen therapy, etc. for long periods of time could suffer from copper dysregulation -- which a symptom of copper dysregulation is HAIR LOSS. Are you familiar with this at all? Could THIS be part of my problem??
If you are doing the tests to analyze the reason for hair loss/thinning then you would probably get much more useful information from a hair test, rather than using blood tests, but I'm no expert. At any rate, I don't see why they would need all that much hair for a test.
I know a little about this topic (not a lot), but I believe it (the hair loss) is almost surely associated with the HRT/estrogen situation and your zinc/copper ratio. And there is some evidence that long-term HRT may cause copper issues. Without looking this up, I'm not sure whether your GP can accurately determine your zinc and copper levels (by means of blood tests). Gabes probably knows a lot more about this than I do because she has had to deal with a zinc/copper imbalance due to another issue. Maybe she will have time to respond to this post later.
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.
Pretty much what i stated in my initial reply applies for zinc/copper imbalances due to hormone treatments
my observations and this is from forums with people with other health issues, there are a few key nutrients that are key to stopping hair loss;
- zinc
- biotin
- B3
- amino acids
If you suspect zinc/copper imbalance then it is worht getting a blood test to confirm zinc/copper levels and ratios. (even thought the results may be 'in range' and considered normal by mainstream, the aim is to have zinc level higher than copper
The other key thing that would be depleted by hormone treatment is magnesium, and this will also impact cell health/bodies ability to heal etc.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I am about to order the Enterolab tests this morning (A1 & C1 tests per your suggestion). However, I see that they have a fat malabsorption test that I am wondering if I should order as well but would like to ask your thoughts on that one. I have always been a very thin person (I have a really high metabolism) but keep losing weight as I get older and since I've been diagnosed with Colitis. Trust me, I have a healthy appetite but cannot seem to put weight on - especially now. I am wondering if it is a fat malabsorption issue? I am 5'4" and now down to 107-108. My skin looks shriveled, it's extremely dry and of course, as you know, my hair has been shedding in excessive amounts. Are you able to speak to this fat malapsorbtion test? If I did order the test and found I do have an issue with malabsorption, how does one go about turning THAT around?
Most of us have a pretty serious malabsorption issue, so whether or not you order the fat malabsorption test pretty much depends on your curiosity about how serious it might be in your case. It will resolve as you begin to control the inflammation and your intestines begin to heal. As your gut heals, you will become better able to absorb nutrients again and eventually start regaining weight.
According to my research, the weight loss with MC is almost certainly due to the malabsorption of fats and bile acids. It's possible to treat this either with cholestyramine or budesonide. The details of why/how this works will be in my new (soon to be published) book.
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.
Thanks for the quick response, Tex. I really appreciate it.
I viewed the link to your new book and look forward to it being published! I will be one of the first in line to buy it.... I did purchase your first book two years ago when I found your website and when I was first diagnosed with collagenous colitis. I found it incredibly informative, even though I must admit that I do struggle to understand all of it - it's overwhelming (to me at least). I will say I feel very fortunate to have found your website and this forum! Thank you for all of your time and hard work!
Wanted to give an update and seek additional help (if possible) related to the excessive hair shedding again that started over 2 years ago with the onset of collagenous colitis:
TESTING:
I went to my gp and had blood tests run for several vitamins / minerals (he would NOT run all that I asked him to which made me furious). I also purchased the lab tests from Enterolab and are waiting for those results. Lastly, I went back to the endocrinologist and got my hormone levels checked as well (I have yet to hear back from them but can see my results on-line).
GREAT LAKES COLLAGEN:
Per a suggestion from Brandy, I believe, I also purchased the Great Lakes Collagen Hydrolysate to help with hair loss. I was very impressed with the reviews on Amazon as it related to hair loss, etc. I took it for about 5 days and started experiencing extreme bloating and uncontrollable gas. So much so that I had to discontinue taking it. I am SO disappointed that it had this affect on me, as I was hoping it may be able to help with the hair loss and other things. It has been a couple of days since I quit taking it and now I am experiencing stomach pain / discomfort.
ANTIBIOTIC ISSUES?:
I also should mention that about 5 weeks ago, my dentist had to put me on amoxicillin for an issue I was having with a bad molar. It seems that a couple of weeks after finishing this antibiotic, my stomach started giving me issues again. And, once I started the collagen powder, man did it ever make things worse. Could it be the antibiotic that is causing the majority of my stomach issues now, or do you believe it is mostly from the Collagen? I am at my wits end!
UNDERSTANDING TEST RESULTS:
I am currently trying to find a nutritionist to help me understand my vitamin / mineral levels, etc. but was hoping for any kind of interpretation from the colitis support group for any initial feedback on what my levels look like in comparison to others and if the levels look o.k. I know Gabes said my zinc should be higher than my copper - which it is NOT. Gabes, do you have a suggestion as to what brand of zinc supplement I should take, how much I should take and for how long to get that zinc level to a better place?
B6: 8.3 (stand range 2.1 - 21.7)
D: 50 (stand range 30-80)
Magnesium: 1.9 (stand range 1.6 - 2.6)
Copper: 108 (stand range 70 - 175)
Zinc: 70 (stand range 60 - 130)
Total Protein: 7.1 (stand range 6.0 - 8.0)
Here are the horome levels:
Testosterone Total: 26 (stand range 12 - 36)
TSH (Thyroid Stim Hormone) 1.27 (stand range 0.35 - 4.94)
Cortisol 6.0 ug/dl
Reference range for 8AM (7-9AM) Specimen: 4.0-22.0 ug/dL
Reference range for 4PM (3-5PM) Specimen: 3.0-17.0 ug/dL
Your digestive symptoms are almost surely due to the amoxicillin upsetting your microbiome. Amoxicillin is notorious for causing problems for MC patients. Hopefully the issue will settle down on its own and won't require any intervention. Amoxicillin use carries a risk of causing a C. diff infection. If you do have C. diff, you should be having major diarrhea and pain issues, in which case you may need to treat the infection with vancomycin. Your PCP can give you a stool culture test to detect a C. diff infection.
What time of day did you take the sample for the cortisol test? If it was early in the day, your result is on the low side, which would indicate a tendency to feel tired/fatigued/short of energy.
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.
With folks that have mc, do you feel the magnesium and D levels are sufficient?
I was also wondering if it is safe to take the product "Gas-X". I am suffering from a lot of bloating and gas pain. The Gas-X does help, but I'm nervous about taking it. The ingredients are:
Active Ingredients: In Each Tablet: Simethicone (125 Mg). Purpose: Antigas. Inactive Ingredients: Calcium Phosphate Tribasic, Colloidal Silicon Dioxide, D&C Red 30 Aluminum Lake, Dextrose, Flavors, Maltodextrin, Propylene Glycol, Soy Protein Isolate
Connie wrote:My coristol testing was done late afternoon...
Your result seems fine in that case.
Connie wrote:With folks that have mc, do you feel the magnesium and D levels are sufficient?
Those results should be adequate. They're better than most. MC is constantly depleting them if we don't supplement them.
Connie wrote:I was also wondering if it is safe to take the product "Gas-X".
Simethicone-based products are generally safe for MC patients (and they seem to work as advertised), but if you're sensitive to soy you may have a problem with it due to the "Soy Protein Isolate" ingredient.
You're very welcome.
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.
Hey, I think I may be on to something here and wanted to get your thoughts.
My blood tests showed that my zinc is 70 (which is on the low side) "standard range" is supposed to be 60-130)
I was doing more research on zinc and found that even moderate deficiency in zinc (which can result from gut issues, colitis, etc., as you know) can cause diffuse hair loss. Perhaps it IS the zinc that is causing my excessive hair shedding. I also read that not enough zinc can cause skin issues too, which I definitely have been experiencing, especially within the last year.
That being said, can you / anyone advise on an appropriate brand of zinc that I could purchase and how much / how long I should supplement with it?
