hi all,
I used to be a member, way back in 2008-2009, greengirl78 I think was my username. (i lost all my log in info, so created a new account). I was stubborn, and didn't want to try the GF diet. I've tried all those medicines conventional doctors like to hand out like candy. none worked without terrible side effects. so, I had a baby - and had a good stretch of 10 months symptom free, yay!
but LO and behold, six months post baby I was diagnosed with Hashimoto's thyroiditis. ugh. so, after trying out levothyroxine and synthroid, I finally was able to convince my doctor to let me try armour - which is GF. what a difference! this diagnosis scared me. I've read enough on autoimmunity to know once you have two, your setting yourself up for #3 if you don't change your lifestyle. and with a baby now, I want to be healthy, active and able to participate.
so anyhow, I wanted to thank all of you for being here. Tex, I have never met you in person, but you truly are an amazing man with all your self taught knowledge! your words about going GF have echoed in my mind many times over the years.
I started the GF diet six weeks ago, and am amazed at the difference. I still have a ways to go, and most likely have a few more intolerances to weed out. but that will come in due time.
so in my quest to get better, I visited my local library. I found a fantastic book called "the immune system recovery plan" by functional medicine dr. Susan Blum. it was a fascinating read - and I highly recommend it. she discusses autoimmune diseases, and gets into detail about a celiac "spectrum" which is fascinating, albeit sobering.
so I have a few questions. when following the GF diet, can you give an estimate of approximately how long it took to see a resolution of symptoms? I know it's most likely different for all, but just curious what all of your timelines look like.
Also, is MC considered autoimmune?
hello from a new oldie...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Greengirl,
Welcome back, and thanks for the kind words. Good for you for deciding to take the plunge to get your life back, and it's good to hear that you're already seeing improvements. Congratulations on bringing a new bundle of joy into the world.
Realistically, without a medication to mask the symptoms while the diet changes are allowing the gut to heal, it typically takes from 6 months to a year for the diet alone to bring stable remission from the D, and it often takes another year before all of the other symptoms (such as fatigue and brain fog) will completely fade away. Some people heal faster, and a few take longer, but it typically takes at least several months of healing to reach a point where we won't be afraid to stray too far from the nearest bathroom, and after that we continue to slowly but steadily improve.
Yes, I agree with Dr. Blum that gluten sensitivity opens the door to a full spectrum of autoimmune-type issues, if left untreated. Be sure that you get your vitamin D level up well into the safe range, also, because vitamin D deficiency is closely associated with an elevated risk of developing additional autoimmune diseases. And IBDs (including MC) inherently deplete our vitamin D level. That's one of the reasons why existing autoimmune diseases promote the development of additional autoimmune diseases. It's a self-perpetuating cycle, unless we get our diet in order, and keep our vitamin D level up where it needs to be.
And yes, though some doctors are behind the times, and don't yet recognize MC as an autoimmune disease, it is indeed an autoimmune disease, because it's perpetuated by the production of antibodies, including anti-tissue transglutaminase antibodies.
Good luck with your new diet, and please keep us posted.
Tex
Welcome back, and thanks for the kind words. Good for you for deciding to take the plunge to get your life back, and it's good to hear that you're already seeing improvements. Congratulations on bringing a new bundle of joy into the world.
Realistically, without a medication to mask the symptoms while the diet changes are allowing the gut to heal, it typically takes from 6 months to a year for the diet alone to bring stable remission from the D, and it often takes another year before all of the other symptoms (such as fatigue and brain fog) will completely fade away. Some people heal faster, and a few take longer, but it typically takes at least several months of healing to reach a point where we won't be afraid to stray too far from the nearest bathroom, and after that we continue to slowly but steadily improve.
Yes, I agree with Dr. Blum that gluten sensitivity opens the door to a full spectrum of autoimmune-type issues, if left untreated. Be sure that you get your vitamin D level up well into the safe range, also, because vitamin D deficiency is closely associated with an elevated risk of developing additional autoimmune diseases. And IBDs (including MC) inherently deplete our vitamin D level. That's one of the reasons why existing autoimmune diseases promote the development of additional autoimmune diseases. It's a self-perpetuating cycle, unless we get our diet in order, and keep our vitamin D level up where it needs to be.
And yes, though some doctors are behind the times, and don't yet recognize MC as an autoimmune disease, it is indeed an autoimmune disease, because it's perpetuated by the production of antibodies, including anti-tissue transglutaminase antibodies.
Good luck with your new diet, and please keep us posted.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome back!!
Your question about going gluten free and how long before big improvement, the messy answer is 'it depends'
Once a major trigger like gluten is removed, the body starts to heal, and for quite a few (over half the people in this group) another ingredient becomes the major trigger, so intense symptoms return.
You remove that trigger, ie dairy, or eggs, or soy, things improve, you think I have got it figured out, and for some, symptoms will start again, letting you know that something else you are ingesting is a trigger.
For most, gluten is the worst, and healing from the damage can take a a few months, and for others a year, or years..
Be prepared - histamine/mast cell is a common issue during the healing stage.
Thanks for the book info, very keen to read it, retrying to decode the mysteries of my immune system is my current focus...
Your question about going gluten free and how long before big improvement, the messy answer is 'it depends'
Once a major trigger like gluten is removed, the body starts to heal, and for quite a few (over half the people in this group) another ingredient becomes the major trigger, so intense symptoms return.
You remove that trigger, ie dairy, or eggs, or soy, things improve, you think I have got it figured out, and for some, symptoms will start again, letting you know that something else you are ingesting is a trigger.
For most, gluten is the worst, and healing from the damage can take a a few months, and for others a year, or years..
Be prepared - histamine/mast cell is a common issue during the healing stage.
Thanks for the book info, very keen to read it, retrying to decode the mysteries of my immune system is my current focus...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
thank you both for the warm welcome, advice and information.
what is histamine/ mast cell?
and should I ask my dr. to check my vitamin D level? I take a women's multivitamin from trader joes daily; but I'm assuming it doesn't have enough to be my levels up to optimal? plus, I live just north of boston. we haven't seen the sun since last year. (kidding, well sort of)
I am almost certain next to eliminate are corn and casein. I just couldn't bear to do it all a once. however, I was having some relief, but over the past week I feel worse. I love cheese, milk, yogurt. all of it. but I'm getting there. I've become quite the short order cook ;)
I definitely have to search the recipes here. the most difficult aspect of going GF for me is dinner. I get home from work and have about 45 minutes to get it on the table before the little one gets impatient (or the husband - haha). I am the cook in the house, so I've been making a gluten meal, plus a GF one basically every night. I need to learn better menu planning skills, as well as time management for this. (and I'm a chef's daughter - go figure).
it's amazing to me the amount of people who don't understand gluten intolerance. I've lucked out - the NP I see is extremely supportive. GF has also helped the arthritis in my back. I was receiving steroid shots 3 x's per year, along with taking pain meds. 3 weeks into GF i was able to stop the pain med.
what is histamine/ mast cell?
and should I ask my dr. to check my vitamin D level? I take a women's multivitamin from trader joes daily; but I'm assuming it doesn't have enough to be my levels up to optimal? plus, I live just north of boston. we haven't seen the sun since last year. (kidding, well sort of)
I am almost certain next to eliminate are corn and casein. I just couldn't bear to do it all a once. however, I was having some relief, but over the past week I feel worse. I love cheese, milk, yogurt. all of it. but I'm getting there. I've become quite the short order cook ;)
I definitely have to search the recipes here. the most difficult aspect of going GF for me is dinner. I get home from work and have about 45 minutes to get it on the table before the little one gets impatient (or the husband - haha). I am the cook in the house, so I've been making a gluten meal, plus a GF one basically every night. I need to learn better menu planning skills, as well as time management for this. (and I'm a chef's daughter - go figure).
it's amazing to me the amount of people who don't understand gluten intolerance. I've lucked out - the NP I see is extremely supportive. GF has also helped the arthritis in my back. I was receiving steroid shots 3 x's per year, along with taking pain meds. 3 weeks into GF i was able to stop the pain med.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
There is a dedicated section on the topic page for mast cell/histamine.
Re meal ideas and cooking.
Working full time, i do a cook up on the weekend, so that I have lunches/dinners for the week.
(For me having the main meal at night did not settle so well, majority of the time I have main meal at lunch)
Steamed veges with protein that suits your family
Soups
Stews
Using pre cooked meat and veges, add some eggs and make a frittata.
Home made fried rice with safe proteins and safe veges
Stir fry - with safe proteins and veges
Definitely get your Vit D3 level checked. I live in sunny Australia, we are now in Autumn/fall! my Vit D3 level halved in 3 months with the impact of moving interstate.
Re meal ideas and cooking.
Working full time, i do a cook up on the weekend, so that I have lunches/dinners for the week.
(For me having the main meal at night did not settle so well, majority of the time I have main meal at lunch)
Steamed veges with protein that suits your family
Soups
Stews
Using pre cooked meat and veges, add some eggs and make a frittata.
Home made fried rice with safe proteins and safe veges
Stir fry - with safe proteins and veges
Definitely get your Vit D3 level checked. I live in sunny Australia, we are now in Autumn/fall! my Vit D3 level halved in 3 months with the impact of moving interstate.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome back and congrats on your new baby! I don't know how bad your symptoms are, but dairy should definitely go for now. Even if we are not producing antibodies to it, we ALL CAN'T TOLERATE DAIRY TOO WELL WHEN OUR GUT IS INFLAMED. I know it's hard. I also love cheese and miss it terribly, but it was the thing that I removed that gave me the most immediate relief. I actually can tolerate a bit of parmesan. or hard cheese now ( 2 years later), but don't do it very often.
I have come up with a rotating menu for a few weeks that is gluten free and that everyone in the family can eat. Trader joes has a brown rice pasta that is pretty good ( if you do pasta). If you just have some meat, fish, or egg dish with some well cooked veggies and maybe rice or potatoes, then you have a meal! Sometimes, I would just have the meat and veggies and then just give my husband and daughter some french bread to make them happy. it takes time, but once you have some "go to" recipes, it gets easier.
You might want to buy Tex's book. It's great and explains the whole Histamine thing… among other things that makes everything so much more clear. Just hit the picture of it in the upper right hand corner and you will be in Amazon.
Good luck and keep us posted on your progress.
leah
I have come up with a rotating menu for a few weeks that is gluten free and that everyone in the family can eat. Trader joes has a brown rice pasta that is pretty good ( if you do pasta). If you just have some meat, fish, or egg dish with some well cooked veggies and maybe rice or potatoes, then you have a meal! Sometimes, I would just have the meat and veggies and then just give my husband and daughter some french bread to make them happy. it takes time, but once you have some "go to" recipes, it gets easier.
You might want to buy Tex's book. It's great and explains the whole Histamine thing… among other things that makes everything so much more clear. Just hit the picture of it in the upper right hand corner and you will be in Amazon.
Good luck and keep us posted on your progress.
leah
thank you for all the wonderful meal suggestions. thankfully grilling season is upon us which will make my life much easier. last night I made up a stir fry with a bunch of veggies, sweet potato and brown rice. it was delicious.
I read through some of the information on mast cells. i thought it odd last year whenever I took Claritin for spring allergies that it helped with my CC symptoms. now it all makes sense. there is so much to learn about this disease. it is truly overwhelming. thanks to all of you for all the work you do.
tex, will the book be available for kindle purchase?
I read through some of the information on mast cells. i thought it odd last year whenever I took Claritin for spring allergies that it helped with my CC symptoms. now it all makes sense. there is so much to learn about this disease. it is truly overwhelming. thanks to all of you for all the work you do.
tex, will the book be available for kindle purchase?
Yes, the book is available at Amazon in either printed form or a digital version for the Kindle. It's also available at Apple in the proper format for iPads. It's available at Barns & Noble for the Nook, and it's available at Diesel, Kobo, Sony, and Flipkart. It's also available at Smashwords in digital formatting for any of the systems listed in the previous sentences. It was published on August 27, 2012.
Almost all of us seem to have mast cell issues of some degree (at certain times). For many of us, they seem to rarely cause any noticeable problems, but for a significant percentage of us, mast cells can be a somewhat regular, serious problem that can trump almost everything else under certain conditions.
Tex
Almost all of us seem to have mast cell issues of some degree (at certain times). For many of us, they seem to rarely cause any noticeable problems, but for a significant percentage of us, mast cells can be a somewhat regular, serious problem that can trump almost everything else under certain conditions.
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.