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Kari,
That is very concerning - and of course, there is nothing you can do. With the thyroid problems and strokes and symptoms, it seems very likely you're right that there's gluten intolerance (and with your double celiac genes... it would be amazing if that were not the case). I suppose if their symptoms were intolerable, giving something up would seem less onerous. (Just the idea of a stroke is intolerable, but I'm sure their doctors have not connected this to gluten.) My mother had a relatively minor stroke, and the CT scans at the time revealed that it was not her first - she'd already had a couple of smaller ones, apparently in unimportant areas of the brain. I wonder whether that's not true for me.
I still have some "buffer" pounds above my college weight, which was at the absolute bottom of the charts for my height. I am taking fish oil - my plan is to gradually increase that, and it does add fat calories. "Losing" almonds really slowed down my fat consumption. I am trying not to over-use coconut to make up the difference, and hope to establish a rotation where I vary meat, 'fat-source' and veg/fruit, over about a week. I'm still avoiding most grains, and it feels right to stay the course on that for now. I'm sure the real understanding (and tweaking) will come from MRT.
I do hope you don't lose more weight, but it sounds as though you are healthy and healing. So that must be the right weight, for you, for now. Perhaps it will increase ever so gently as you continue to strengthen and recover...
Tex, I look forward to your thyroid thoughts. I am going to push for a more complete thyroid panel when I f/u with my doctor about my recent bloodwork. I had a strange swelling on my neck in January, right where I believe the thyroid is, and though it went away, I think I have to pursue every possible loose thread in the overall health picture. Meantime, hope you're well!
Love,
Sara
Gluten and Cholesterol
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Sara - interesting about your suspicion of "minor" strokes. Last year when I went in for my annual check up, I ended up taking an MRI of my head, since I was having aura migraines and was diagnosed with orthostatic hypotension.
The Neurologist said that he saw slight "abnormalities" on the scan, but could not tell me anything more conclusive. He said it could have been a minor stroke, but was not sure. When I asked him if this is something that could have been there all my life, he answered "yes". So go figure. I can tell you with confidence that I will never have a head MRI done again if I can help it. It was the worst medical procedure I have ever experienced. It took me a long time to recover from it, and it wouldn't surprise me that it did some damage to my brain :).
Anyhow, needless to say, I will do everything in my power to minimize my "stroke risk". Hiking, biking, boating and lots of yoga is helping me regain my strength and stamina. The uncomplicated, healthy diet I'm eating is certainly also helping me safeguard my health. I haven't weighed myself since I've been in the mountains, so I look forward to stepping on the scale to see if I have gained a little weight when I get back home.
Tex - I'm also curious about your musings on thyroid issues.
Love,
Kari
The Neurologist said that he saw slight "abnormalities" on the scan, but could not tell me anything more conclusive. He said it could have been a minor stroke, but was not sure. When I asked him if this is something that could have been there all my life, he answered "yes". So go figure. I can tell you with confidence that I will never have a head MRI done again if I can help it. It was the worst medical procedure I have ever experienced. It took me a long time to recover from it, and it wouldn't surprise me that it did some damage to my brain :).
Anyhow, needless to say, I will do everything in my power to minimize my "stroke risk". Hiking, biking, boating and lots of yoga is helping me regain my strength and stamina. The uncomplicated, healthy diet I'm eating is certainly also helping me safeguard my health. I haven't weighed myself since I've been in the mountains, so I look forward to stepping on the scale to see if I have gained a little weight when I get back home.
Tex - I'm also curious about your musings on thyroid issues.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
That's probably it! I've been wondering why my memory and cognizance seem to be declining. I've had 2 MRI brain scans in the last 2 years, (actually 3, since the last one was repeated with a contrast agent in my blood).Kari wrote:It was the worst medical procedure I have ever experienced. It took me a long time to recover from it, and it wouldn't surprise me that it did some damage to my brain :).
And the conclusion was . . . . . 
My opinion is, since most neurologists refuse to acknowledge the existence of neurological effects due to damage caused by gluten-sensitivity, they have no way to interpret the findings of an MRI scan that shows evidence of gluten damage. Since gluten damage probably causes unique patterns in the brain, by denying it's existence, they have no frame of reference.
Love,
Tex
P. S. I'll try to get that post written, this afternoon.
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.
Kari,
When you say boating... do you mean whitewater?
Interesting point, Tex... I bet there's a lot of shoulder-shrugging at MRI and other imaging studies of gluten-damaged brains - and probably every body part other than the small intestine. I wonder if Hadjivassiliou has any luck getting this notion across, in a clinical setting, over in his part of the medical world?
L,
S
When you say boating... do you mean whitewater?
Interesting point, Tex... I bet there's a lot of shoulder-shrugging at MRI and other imaging studies of gluten-damaged brains - and probably every body part other than the small intestine. I wonder if Hadjivassiliou has any luck getting this notion across, in a clinical setting, over in his part of the medical world?
L,
S
I get the impression that he's not much better off than Dr. Fine - his information is out there, but mainstream docs pretty much seem to ignore it, for the most part.Sara wrote:I wonder if Hadjivassiliou has any luck getting this notion across, in a clinical setting, over in his part of the medical world?
Love,
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.
Hmmm. I had about 5 MRIs between January 2010 and August 2010 because of a brain tumor. I'm claustrophobic, so I didn't like them for that reason, but I don't feel that I suffered any side effects from them. To the contrary, I felt relieved to be told that the tumor was calcified and wasn't a threat.
Once again, we are all different.
Gloria
Once again, we are all different.
Gloria
You never know what you can do until you have to do it.
Gloria,
That comment that I made about the MRIs was tongue-in-cheek. I'm pretty sure that my memory/cognizance issues are due mostly to gluten damage and/or old age.
Sorry, I should have made it clear that I was joking.
Tex
That comment that I made about the MRIs was tongue-in-cheek. I'm pretty sure that my memory/cognizance issues are due mostly to gluten damage and/or old age.
Sorry, I should have made it clear that I was joking.
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.
Sara - Dillon has a big lake where there are all kinds of boating activities. The elevation in Dillon is over 9000 feet, so the annual sailing race they have on the lake is called "the country's highest race" - meaning at the highest elevation. It was so much fun to see it - we went out on a pontoon boat with the race organizer, so we were in the midst of the race - he knew just were to position the boat for best views. Bill likes to sail, but I prefer kayaking and canoeing. I would never attempt whitewater - have a lot of respect for rivers.
Gloria - that must have been very frightening - glad it turned out so well.
I have a feeling that the experience of a head MRI has a lot to do with the equipment/method/facility/technician. For me, the banging noises were just unbearable - felt like someone was knocking with a hammer on a helmet on my head, and it went on for close to half an hour. It was absolutely relentless and extremely unpleasant. The lab was set up in a mobile trailer right outside the hospital - a traveling MRI facility - perhaps that also contributed to the discomfort?
I talked to my sisters (who also had head MRI's done) about the experience - they said something similar to you, that it was not bad, and they actually had music piped in through headphones - guess I should have gone to Norway to have it done :).
Love,
Kari
Gloria - that must have been very frightening - glad it turned out so well.
I have a feeling that the experience of a head MRI has a lot to do with the equipment/method/facility/technician. For me, the banging noises were just unbearable - felt like someone was knocking with a hammer on a helmet on my head, and it went on for close to half an hour. It was absolutely relentless and extremely unpleasant. The lab was set up in a mobile trailer right outside the hospital - a traveling MRI facility - perhaps that also contributed to the discomfort?
I talked to my sisters (who also had head MRI's done) about the experience - they said something similar to you, that it was not bad, and they actually had music piped in through headphones - guess I should have gone to Norway to have it done :).
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
I'm pretty sure that the "obnoxiousness" of the machine is a function of it's age and design. The first MRI scam that I experienced was with an older machine, possibly a civil war relic,
, and it was so noisy that even though I had music piped into headphones, I could barely hear it much of the time, due to all the noise that mimicked a blacksmith hammering out horseshoes, next to my head, and who could listen to music, anyway, with all that noise. The only music that would even be appropriate would be Tchaikovsky's 1812 Overture. And, as you say, the test seemed to go on forever. Your description of the sensations felt by the patient, fits it to a "T".
The second scan I had was with a much newer machine, and it wasn't nearly as aggravating, and maybe it was just my imagination, but the test seemed to take much less time, also. It's noise level was more attune to Sousa's "Stars and Stripes Forever".
Love,
Tex
I'm pretty sure that the "obnoxiousness" of the machine is a function of it's age and design. The first MRI scam that I experienced was with an older machine, possibly a civil war relic,
, and it was so noisy that even though I had music piped into headphones, I could barely hear it much of the time, due to all the noise that mimicked a blacksmith hammering out horseshoes, next to my head, and who could listen to music, anyway, with all that noise. The only music that would even be appropriate would be Tchaikovsky's 1812 Overture. And, as you say, the test seemed to go on forever. Your description of the sensations felt by the patient, fits it to a "T".The second scan I had was with a much newer machine, and it wasn't nearly as aggravating, and maybe it was just my imagination, but the test seemed to take much less time, also. It's noise level was more attune to Sousa's "Stars and Stripes Forever".
Love,
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.