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.
Jody....I know its overwhelming, to say the least, but try not to be too angry, at your situation. At least you now know the truth and by avoiding gluten, soy, etc, your body can heal, and you can get your life back!
Maybe the nausea is from high histamine foods?? That was my issue. Once I removed foods high in histamines, and started on Allegra, the queasiness and headaches lessened.
It's ironic you should mention achy shoulders and arms. I have that also....still.
Be patient...try yoga, or deep breathing when you feel mad....I have a difficult time when we eat in the company of others. Last night, we ate at my parents home for my brothers birthday...I took my own food...and watched them eat cake and pie and ice cream. It does sting sometimes...but it lessens as time goes on because I am starting to feel good again and have more energy, and feel like the old me!
You have many people on this board who totally understand and are experts at helping. I don't know what I would have done without this site!
I know how brain fog feels....so, rest as much as you can, eat right, and take a walk when you feel like exploding or feel low. My dog listens to all my problems and licks my face when I'm done...good therapy!
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
I'm sorry about those results. I know you will get it all figured out, but it will take some doing! A journal listing what you eat each day and detailing BM's and how you feel each day might help. I ate lots of nut butters while I was in the early stages (easy to make yourself in a food processor with raw nuts), and lots of homemade soups made with meats I could tolerate. Avocados and bananas were staples, as we're well-cooked zucchini, winter squash, sweet potatoes. Fruits were difficult to tolerate then, but I am able to eat berries now in a smoothie.
I know it sounds daunting right now, but I'm happy you discovered what you need to do to heal. Hope you feel better soon.
Jean
"The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not." Mark Twain
It just dawned on me Jody... do you take anti-depressants?If so, have you previously asked Tex about the drugs you are taking? Certain anti-depressants can CAUSE MC! For some people, once they switch from one type to another or get off completely, the MC goes away!
please look into it if you haven't already.
Leah
The other part that has me angry is for my brothers who must have the same genetic makeup as I have. One was depressed and drank himself to death at 48 years old. The other, who is now 62, became very ill this summer and has been diagnosed with Wernicke's -Karsakoff syndrome.
Everyone attributed his symptoms and diagnosis to alcohol but I wasn't convinced the amount he drank could be the sole cause of the damage he's suffered. Severe memory loss and malnutrition. Further reading (since I realize now how my family must all be affected by the gluten/celiac genes) has me convinced that he likely has the small intestine damage that I have and has serious nutrient malabsorption which is a description of Wernicke's-Karsakoff. Specifically B1 deficiency. I wonder how close I was to his diagnosis.
Sorry about the loss of your brother and the diagnosis of your brother with Wernicke's Karsakoff. My 49 year old brother was diagnosed with Wernike's Karsakoff last year. As soon as I read up on the B deficiency involved with W-K I figured there must have been Gluten Sensitivity involved in my brother's case. GS and alcohol both cause intestinal permeability (leaky gut) and combined together I think it's a recipe for memory issues. My brother was diagnosed with bipolar (in my opinion it was mild as he could hold down a job here and there) in his early 20's by Johns Hopkins when he was a patient of a free state of Maryland rehab. Now I know that the bipolar probably could have been lessened with a GF diet. Like so many people with mental health issues the prescription drugs can have pretty severe side effects so the mentally ill frequently turn to alcohol or street drugs in lieu of prescription drugs. When the hospital called us about my brother's diagnosis they said it was very rare to have a 49 year old diagnosed with W-K. I'm with you.....I don't believe the amount my brother drank was the sole cause of the brain damage he suffered.
Mom is diagnosed celiac. Mom's younger brother had schizophrenia and he was on the SCD which is a gluten free diet for at least 20 years until his death. Mom's older brother had some kind of memory disease in his late 50's.......kind of a delayed speech thing....I've often thought he had some kind of gluten/brain issue.
When I was diagnosed with MC I flat out told my sister to go GF or at least low gluten. She adopted GF right away due to me, Mom, and Mom's younger brother having to be GF.
Regarding entorcort.....think long slow taper at the low end. I was on it for 4.5 months. At the low end I was doing one pill every other day for a month then one pill every third day for a month till I finally got off. The 3 months that the American docs recommend is not typically long enough going by the history of this board. i.e. 3 months seems to give higher risk of relapse.
Joint pain, brain fog, shoulder aches, muscle aches were all mc symptoms that I had. It gets better. I've been in remission about 5 months.
Eliminating anything with an ingredient list really helped me.
The good news is I kind of feel like I've found the fountain of youth. I'm 52 but feel like I'm around 35. The memory issues I had in my 40's is gone. The joint pain I had in my 40's is gone.
I did my undergraduate honors research on Wernicke Korsakoff syndrome. The research continued into my first year of graduate school and eventually was published. This was nearly 40 years ago.
My married name was Dricker. Nelson Butters was one of the leading researchers in the field and my honors adviser.
At the time the interest was primarily concerned with determining the nature of the memory deficit and mapping that onto the brain. It was known that it was associated with alcoholism and a severe thiamine deficiency. Although most of the people who had it were long term alcoholics there were some much younger. I remember one man in his 20's. I would think that anything that affected the body's ability to absorb thiamine could exacerbate the development of Korsakoff syndrome in the presence of alcohol. Certainly celiac disease and gluten sensitivity were not even on the horizon then.
I am sorry for the troubles in your families. It must be very hard to watch a family member struggle with this disease.
I ate meat 3 meals a day (still do, we need lots of protein to heal), I soaked and dehydrated nuts, then made nut butters (they seem to be easier to digest), and I ate well cooked veggies (carrots, squashed, green beans). I could also eat coconut, so I make eggless macaroons, and that's my treat.
After I started eating grains again, I realized I still wasn't healing, and stopped eating veggies for a while, but I did eat them for the carbs while I was grain free.
I think you also have to throw out the window, the idea of eating to stay healthy right now. You have to eat to heal first. Then, once the symptoms (fatigue, joint aches, D) start to diminish, you can start adding foods back into your diet like veggies and fruits.
I am only eating buckwheat/teff bread or muffins (yeast free) and meats, and rotating the meats has helped.
Hi Linda,
Thanks for the feedback : )
I am trying to eat meat 3 meats a day, too, as I keep reading that it's important for healing. And, I'm eating squash but that's it for veggies right now. I've still been eating some brown rice but no potatoes since my enterolab results. I don't have the energy to think about baking yet but the eggless macaroons and muffins sound so good!
Have had a really tough week. First full week back to work and I'm exhausted. I've been nauseous every day and horrible bloating by evening. But, NO diarrhea. So I guess I'm healing.
ldubois7 wrote:Jody....I know its overwhelming, to say the least, but try not to be too angry, at your situation. At least you now know the truth and by avoiding gluten, soy, etc, your body can heal, and you can get your life back!
Maybe the nausea is from high histamine foods?? That was my issue. Once I removed foods high in histamines, and started on Allegra, the queasiness and headaches lessened.
It's ironic you should mention achy shoulders and arms. I have that also....still.
Be patient...try yoga, or deep breathing when you feel mad....I have a difficult time when we eat in the company of others. Last night, we ate at my parents home for my brothers birthday...I took my own food...and watched them eat cake and pie and ice cream. It does sting sometimes...but it lessens as time goes on because I am starting to feel good again and have more energy, and feel like the old me!
You have many people on this board who totally understand and are experts at helping. I don't know what I would have done without this site!
I know how brain fog feels....so, rest as much as you can, eat right, and take a walk when you feel like exploding or feel low. My dog listens to all my problems and licks my face when I'm done...good therapy!
Linda,
I just realized I just responded to a post that I had already responded to! Talk about brain fog! lol
You give great advice. I'll have to check into the histamines. It's all so overwhelming and I'm so tired that I have to take things slowly or I just fall apart. I so appreciate the advice here and the hope that things can/will get better. That's is all that is keeping me going right now.
My dog is my best friend! lol She's been through it all with me and never seems to tire of my complaints!
I'm sorry about those results. I know you will get it all figured out, but it will take some doing! A journal listing what you eat each day and detailing BM's and how you feel each day might help. I ate lots of nut butters while I was in the early stages (easy to make yourself in a food processor with raw nuts), and lots of homemade soups made with meats I could tolerate. Avocados and bananas were staples, as we're well-cooked zucchini, winter squash, sweet potatoes. Fruits were difficult to tolerate then, but I am able to eat berries now in a smoothie.
I know it sounds daunting right now, but I'm happy you discovered what you need to do to heal. Hope you feel better soon.
Jean
Thanks Jean. I've been trying to journal but I'm not as consistent as I should be. My problem right now is gathering the energy to prepare those foods you mentioned on the weekend so they are available to me for the work week. I should be doing all that right now but only had the energy to get a turkey in the oven before I collapsed on the couch here to read the board.
Leah wrote:It just dawned on me Jody... do you take anti-depressants?If so, have you previously asked Tex about the drugs you are taking? Certain anti-depressants can CAUSE MC! For some people, once they switch from one type to another or get off completely, the MC goes away!
please look into it if you haven't already.
Leah
Hi Leah,
Yes, I had been on Zoloft (for 18 years) prior to the MC diagnosis. Once I read that the Zoloft could have been a cause, I began weaning myself off. I went from 200 mgs to nothing within a month. So, I'd say it's been about 2 months that I've been off.
I did start a sublingual B-12 that is GF and SF and took it for about a month. I stopped taking that today since I've been feeling so badly this week with nausea and bloating. Not sure if it was the cause, but it's worth a try.
Your family history and mine have strong similarities. Thank you for posting that as it reaffirms what I've been thinking. Such a simple and easily corrected thing can cause such devastation. Now I wish gluten were the only thing I had to remove from my diet. That would be a "piece of cake" lol.
Your brother who was diagnosed with WK....does he have severe memory loss? And, has he shown any improvement? My brother improved after receiving all the IV nutrients but now has seemed to level off. It's a hard situation right now to change his diet as his wife is not handling any of this very well.
I'm so happy to hear how well you are doing. It gives me hope. I know it's a lot of work and a long road. And, complicated by the fact that with little energy and brain power it's hard to know what and how to make to eat.
Brandy wrote:Regarding entorcort.....think long slow taper at the low end. I was on it for 4.5 months. At the low end I was doing one pill every other day for a month then one pill every third day for a month till I finally got off. The 3 months that the American docs recommend is not typically long enough going by the history of this board. i.e. 3 months seems to give higher risk of relapse.
Joint pain, brain fog, shoulder aches, muscle aches were all mc symptoms that I had. It gets better. I've been in remission about 5 months.
Eliminating anything with an ingredient list really helped me.
The good news is I kind of feel like I've found the fountain of youth. I'm 52 but feel like I'm around 35. The memory issues I had in my 40's is gone. The joint pain I had in my 40's is gone.
I will definitely do the long slow taper based on yours and other's advice.
Would you mind giving me an idea of what you might eat in a day when you have a chance? I haven't eaten any processed food in 3 months and have down pretty well with GF, DF, SF and EF. But, now that I have additional problem foods, have started back to work full time and reduced to 3mg entocort a day, I'm feeling very overwhelmed with what and how much to eat. I'm nauseous every morning and bloated every night (at least I was all week after work). The nausea does subside during the day but I'm so very tired and can't concentrate at all. Work has been very, very difficult. I'll be lucky to hang on to my job if I don't do something quickly to improve my concentration and memory.
JFR wrote:I did my undergraduate honors research on Wernicke Korsakoff syndrome. The research continued into my first year of graduate school and eventually was published. This was nearly 40 years ago.
My married name was Dricker. Nelson Butters was one of the leading researchers in the field and my honors adviser.
At the time the interest was primarily concerned with determining the nature of the memory deficit and mapping that onto the brain. It was known that it was associated with alcoholism and a severe thiamine deficiency. Although most of the people who had it were long term alcoholics there were some much younger. I remember one man in his 20's. I would think that anything that affected the body's ability to absorb thiamine could exacerbate the development of Korsakoff syndrome in the presence of alcohol. Certainly celiac disease and gluten sensitivity were not even on the horizon then.
I am sorry for the troubles in your families. It must be very hard to watch a family member struggle with this disease.
Jean
Very interesting Jean!
I had never heard of WK previously. And, even when my brother received the diagnosis I didn't connect the possibility and similarity to what I have. It just occurred to me after reading my enterolab report about the malabsorption of nutrients that it clicked. I had doubted from the beginning of my brother's illness that it was entirely alcohol as I didn't believe that he had been drinking enough to cause such a severe reaction. Of course, now that he has so much memory damage it's impossible to discuss the gluten issues with him. However, he is the happiest I've ever seen him too! Something about not having memories relieves a lot of stress. And, he's being well taken care of so, for him anyway, life is good right now!
Jody wrote:I'll be lucky to hang on to my job if I don't do something quickly to improve my concentration and memory.
This thread describes how to assemble a combination of the active forms of vitamins B-12, B-9, and B-6, that will improve your cognizance and memory. This combination is sold as a prescription vitamin mix known as Metanx. However, you can also formulate it by using the OTC vitamin products mentioned in the thread. It's especially effective because it uses the active forms of these vitamins, which means that the body does not have to convert them. When our digestion is compromised, we may not be able to properly convert vitamins into the active form.
Metanx is usually prescribed to treat the type of peripheral neuropathy that's often associated with diabetes, and I take it to treat peripheral neuropathy due to years of untreated gluten sensitivity. Besides resolving my balance issues, it has improved my cognizance and memory. My previous doctor also took it, strictly for the purpose of improving his cognizance and memory.
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.
Jody wrote:I'll be lucky to hang on to my job if I don't do something quickly to improve my concentration and memory.
This thread describes how to assemble a combination of the active forms of vitamins B-12, B-9, and B-6, that will improve your cognizance and memory. This combination is sold as a prescription vitamin mix known as Metanx. However, you can also formulate it by using the OTC vitamin products mentioned in the thread. It's especially effective because it uses the active forms of these vitamins, which means that the body does not have to convert them. When our digestion is compromised, we may not be able to properly convert vitamins into the active form.
Metanx is usually prescribed to treat the type of peripheral neuropathy that's often associated with diabetes, and I take it to treat peripheral neuropathy due to years of untreated gluten sensitivity. Besides resolving my balance issues, it has improved my cognizance and memory. My previous doctor also took it, strictly for the purpose of improving his cognizance and memory.
Thanks so much Tex. I will definitely read up on and look into these supplements. My memory and concentration issues are definitely causing some depression and additional frustration with dealing with this disease!
It's possible that your doctor might be willing to write a prescription for Metanx if he or she is familiar with it, and/or has any experience with patients using it.
One of the problems is that insurance won't pay for it, and it costs roughly 80 bucks a month these days. You can take the individual vitamins as described in those links, and get the same benefits at roughly half the cost.
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.
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But, NO diarrhea. So I guess I'm healing. 
