Help For Low Cholesterol

[emeraldskies]

Awhile ago, before my hypothyroidism was treated, I was found to have low cholesterol levels (I don't remember the figure, but I have since received proper treatment for the thyroid, so I'm guessing my levels are even lower now). I also have deficient levels of hormones that need cholesterol for synthesis: estradiol, cortisol, pregnenolone, and testosterone. I had these hormones tested on my own in attempt to find out what was wrong with me (pre-celiac diagnosis). Anytime I brought the test results up to my doctors, their eyes would glaze over, and they would quickly stuff them in their files without addressing the matter. A lot these hormone deficiencies cause fatigue and trouble concentrating, so I would like to get proper levels of these hormones as soon as possible. I have noticed that a lot of Gluten-free Casein-free foods are seen as health items, with low fat and low cholesterol. Does anyone know of any Gluten-free Casein-free ways of increasing cholesterol dramatically?

[lbsteenwyk]

Sources of cholesterol include red meat, especially liver, sausage, bacon, higher fat lunch meats, and eggs. Lower fat sources of cholesterol are shrimp and other shelfish. But before you start a high cholesterol diet, I suggest getting your cholesterol checked again. Low cholesterol levels, particularly levels below 100 are an indicator of malnutrition. Since you had undiagnosed celiac disease when your cholesterol was tested, you could well have been suffering from malnutrition.

[emeraldskies]

Thanks for the tips. I probably was and still am malnourished. I will get my levels retested and will monitor them along the way.

[Kathinsearch]

Hi Emeraldskies,

I have always been facinated by the LOW cholesterol thing and Celiac disease because I have had this problem in the past and have also wound up with HIGH

cholesterol after the gluten-free diet, as I am genetically predisposed. Don't let the doctors lack of understanding get in the way of your health... Celiac Disease can & does cause all sorts of high or low levels of many blood tests. That's the effect of malabsorption.

The gluten- free will naturaly bring your cholesterol levels up to normal if you are eating foods that contain or convert into more cholesterol. When gluten has destroyed much of the villi, casein/lactose is also difficult to digest but eventually normalizes when the Casein-free diet is instituted with the gluten-free diet for a while.

You on a casein/lactose free diet too? The low level is due to malabsorption of fats, which gluten-enteropathy will do. I know tis because I had very low levels of pretty much evey thing including cholesterol, when I was ingesting gluten ( even ingesting it in error after the diet began). My levels went up and normalized once I got the hang of the diet and stopped eating foods that others ( including support groups info) told me was ok when it turned out to not be gluten-free.

If you are stil having issues with low cholesterol, you are not absorbing fats properly.... and if gluten is not the culprit, it could possibly be another intestinal disease because the intestines are the place where cholesterol absorption occurs.

The low cholesterol is an indicator, a symptom of other unresolved medical issues.

Before I was found to have Celiac Disease & before the gluten-free & lactose free diets, I had been diagnosed with and treated for starvation, hypothyroidism, epilepsy, B-12 Deficiency, Anemia, Folic Acid deficiency, infertility (low estrogen), rickets & osteoporosis ( low Calcium & Vit D absorption, Crohns disease, atropic gastritis, low cholestrol, Vit K- deficiency= thin blood, acute non-gallstone cholecystitis, early generalized osteoarthritis, organic brain damage ( Vit B-12 def related). 90% of these problems vanished over a 2 year period after strict gluten-free diet and initial Casein/ lactose free diet to get the intestines healed.

I won't lie to you that the 10% unresolved turned out to be long term complications. I have permanent brain damage: cognitive & memory & balance problems from the extensive B-12 & folate deficiencies and I have low but stable bone mass in the osteopenia range. I have chronic arthritis like 90 year old and my intestines never fully healed because they were so bad for so long from the gluten, but the thyroid, epilepsy, fertility & anemia issues are long gone.... and I am grateful for that. I am blessed to be alive and look at my low /high cholesterol issue as a blessing because it was one of the indicators that helped find out that I had been ingestingd gluten in error for about 6 months years after gluten-free diet & Celiac Disease. diagnosis. I hope this info is of help to you.

~Kathy

Awhile ago, before my hypothyroidism was treated, I was found to have low cholesterol levels (I don't remember the figure, but I have since received proper treatment for the thyroid, so I'm guessing my levels are even lower now).  I also have deficient levels of hormones that need cholesterol for synthesis: estradiol, cortisol, pregnenolone, and testosterone.  I had these hormones tested on my own in attempt to find out what was wrong with me (pre-celiac diagnosis).  Anytime I brought the test results up to my doctors, their eyes would glaze over, and they would quickly stuff them in their files without addressing the matter.  A lot these hormone deficiencies cause fatigue and trouble concentrating, so I would like to get proper levels of these hormones as soon as possible.  I have noticed that a lot of Gluten-free Casein-free foods are seen as health items, with low fat and low cholesterol.  Does anyone know of any Gluten-free Casein-free ways of increasing cholesterol dramatically?

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[Merika]

Sources of cholesterol include red meat, especially liver, sausage, bacon, higher fat lunch meats, and eggs.  Lower fat sources of cholesterol are shrimp and other shelfish.  But before you start a high cholesterol diet, I suggest getting your cholesterol checked again.  Low cholesterol levels, particularly levels below 100 are an indicator of malnutrition.  Since you had undiagnosed celiac disease when your cholesterol was tested, you could well have been suffering from malnutrition.

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This is interesting. When i was hospitalized 13 yrs ago with my first big celiac symptoms, the docs discovered I had low good cholesterol and high bad cholesterol. Would this fit the criteria of malnutrition? I definitely suffered malnutrition in the years later, before diagnosis. But the docs at the time were very puzzled by why a skinny vegetarian 19-yr old would have such weird cholesterol levels.

Merika

[emeraldskies]

Kathinsearch: It is good to hear from someone who has had a similar experience. I am on a casein-free diet. I'm still having problems getting enough to eat. I am usually too tired to make food or things just sound unappetizing. I only craved the foods that I was allergic to, and now eating isn't much fun. So, I am still quite emaciated and have actually continued to lose weight since being on the diet. I am just trying to stabilize my weight. I was also misinformed about safe food choices (like you), so I have been recontaminated repeatedly. The last time I ingested gluten, my husband accidentally bought waffles containing wheat that were in the wheat-free section of the same waffle brand. This was about a month-and-a-half ago.

I have had some but not all of the conditions you have experienced. I have never (to my knowledge) had osteoporosis, epilepsy, rickets (but I do have the adult form), Crohn's disease, atropic gastritis, acute non-gallstone cholecystitis, or early generalized osteoarthritis. Did you ever take anything for the hypothyroidism? Did it go away completely with the diet? I will probably have the permanent brain damage as well. Did you ever go to see a neurologist or get a brain scan? I'm sorry you've had the lasting problems. If only celiac disease was diagnosed sooner overall.

[Kathinsearch]

Hi Merika, somehow I received a notice that you had replied to my post, when infact your reply quoted another post from 8/8/05. Since both posts were about cholesterol and malnutrition, I'll reply with a humble opinion...lol!

I am not sure whether the high LDL and low HLD levels would be related to Celiac Disease but it certainly makes sense that they could be because one raises or lowers the other and perhaps you were not as malnutritioned as I was when I was tested. It took many many years for me to get a correct diagnosis- I was actually on death's door by that time & I lucked out with meeting an intern in the Emergency room who knew of celiac disease & symptoms & my blood tests results because his father had it. Losing storage of vitamins and stuff takes a long time when malabsorption is the cause.... sort of like a slow death. You could have been effected to a lesser degree..

On the matter of you at 19 and being a vegetarian with celiac disease, your chance of having aB-12 deficiency was doubled... I believe Folic Acid and B-12 storages go faster than most other vits & minerals in the body, with iron being the fastest to be used up. Hope you are supplimenting B12 if you are on a vegan diet!

~~Kathy

This is interesting. When i was hospitalized 13 yrs ago with my first big celiac symptoms, the docs discovered I had low good cholesterol and high bad cholesterol. Would this fit the criteria of malnutrition? I definitely suffered malnutrition in the years later, before diagnosis. But the docs at the time were very puzzled by why a skinny vegetarian 19-yr old would have such weird cholesterol levels.

Merika

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[Kathinsearch]

Hi Emeraldskies,

I was on Synthroid and was told before celiac disease diagnosis that I would be on it for life.....before diagnosis, my doctor had me switch from Synthroid to a natural ( animal) thyroxin- which did not have so many side effects as Synthroid. Because I was so ill on & off with the celiac disease, I don't recall how long I was on this stuff, or whether I was back on Synthroid by the time I was finally diagnosed with celiac disease. I was so sick of medicines & B12 shots, & not getting better overall..... that is most what I recall- and that I recovered from most of those things over time with the diet, the Iron & thyroid being the earliest to correct.

I do see a neurologist periodically, but my problems either got better or did not get any worse & there is nothing he can do but advise me to stick to the gluten-free diet. I am treated by a wonderful woman psychiatrist who knows all about Celiac Disease and she referred me to get occupational therapy & cognitive remediation. I take small amounts of the alzheimer's drug Namenda (to prevent worsening of memory and confusion symptoms) and Strattera (for poor concentration).She helped me understand my now-stable dementia-type problems. She calls my disorders Post-Vit B-12 Deficiency Dementia and Korsakoff's Nonalcohalic Amnestic Syndrome- (short term-to long term memory problems and difficulty learning new tasks- cannot remember them but in some cases I can if I over practice them.)

This comes from past extensive vit B-1 Thiamine deficiency she said. I also had a head injury during the acute phase of my malnutrition, so my brain damage is a combination of effects from deficiencies and the fall I took ( or seizure I had? not sure) while on the toilet with the runs. I was dehydrated and the floor was marble & I was in a coma for over 24 hrs I am told. I don't have any recall on this and time is sketchy... but what I have been told is that I had the double whammy of head injury, dehydration and vitamin B-1 & B-12 deficiencies at the same time. I have hardly any recall for a 2 year period before Celiac Disease diagnosis and actually forgot about the head injury until I was asked if I had had one during a try at state Vocational rehabilitation.

The long term neurological, cognitive and memory complications from Celiac & the head injury were documented by a neuropsychologist when the state vocational rehabilitation dept had me tested. I don't know how I quite survived not knowing all that I had been coping with but someone how I managed and worked for myself for years. All was well until I got ill again from eating gluten in error for a few months in 1998. I wound up with an infection in my gallbladder which spread to my blood system ( sepsis). I was hospitalized and the shrunken gallbladder removed but I was never the same. My memory problems got 10x worse and I could no longer handle tasks when distracted. I would explode in anger or tears or give up in apathy.

During this 1998 'recontamination' incident I was told that my bloodwork showed I was in a state of 'starvation' yet I had been eating food & even Taco Bell stuff for a few months ( did not know some of it was not really gluten-free and feeling 'ok'.) So after that incident , I decided to forget trying to keep up with what commercial products were gluten-free because i would probably forget to check up anyway! I went simple!

Now, did you know that it takes about 6 months for your intestinal villi to heal from a accident of ingesting gluten? Being "repeatedly recontaminated" means that you are not healing and have not allowed enough time for the gluten-free diet to heal you... which might explain why you are 'emaciated and struggling to stabilize' your weight. The casein-free diet is the lesser priority because you can take those miraculous lactaid tablets before you eat anything with lactose in it... Your intestines are gonna be uncomfortable, diets or not, until the healing is stablized.

If you like, I can give you some simple tips & suggestions gluten-free & lactose free foods I ate to get me going until I was stable, but I had a few questions first:

I was lactose intolerant & was lactose free only. Do you have a casein or milk allergy( hives, swelling breating problem reaction) or are you just lactose intolerant (intestinally only)? Can you/ do you eat eggs? Do you know about the lactose tablets?

Look forward to your reply!

~Kathy

Kathinsearch:  It is good to hear from someone who has had a similar experience.  I am on a casein-free diet.  I'm still having problems getting enough to eat.  I am usually too tired to make food or things just sound unappetizing.  I only craved the foods that I was allergic to, and now eating isn't much fun.  So, I am still quite emaciated and have actually continued to lose weight since being on the diet.  I am just trying to stabilize my weight.  I was also misinformed about safe food choices (like you), so I have been recontaminated repeatedly.  The last time I ingested gluten, my husband accidentally bought waffles containing wheat that were in the wheat-free section of the same waffle brand.  This was about a month-and-a-half ago. 

I have had some but not all of the conditions you have experienced.  I have never (to my knowledge) had osteoporosis, epilepsy, rickets (but I do have the adult form),  Crohn's disease, atropic gastritis, acute non-gallstone cholecystitis, or early generalized osteoarthritis.  Did you ever take anything for the hypothyroidism?  Did it go away completely with the diet?  I will probably have the permanent brain damage as well.    Did you ever go to see a neurologist or get a brain scan?  I'm sorry you've had the lasting problems.  If only celiac disease was diagnosed sooner overall.

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[emeraldskies]

It sounds like you've had a much harder time than me. I had a head injury as a child (a concussion and fractured skull), but I wasn't in a coma. I just lost consciousness until they had finished cleaning me up at the hospital. I also had a seizure after my fall (I was ejected off of my bike headfirst, and a mother of a friend drove by and saw me when it happened). I have no idea about the lasting effects, but I did have ataxia years before that ever happened, so my head injury wasn't the cause. I've only lost memory of the few minutes before my fall and until I regained consciousness, not of the entire event. You have been through a lot.

The limit of my short-term memory comes with speech. I will forget what I was going to say before I have finished the sentence. I am assuming that yours is much more severe. The reason I asked about the neurologist was that I wondered if you had brain calcifications, but I guess you've already explained the causes of your symptoms. Going to a neurologist isn't high on my list of things to do at the moment. I need some aggressive help first. But I would like to know if I have gluten ataxia or not so I will know if things are going to get better or worse. If it's Friedrich's ataxia, I will have permanent brain damage, but not otherwise, probably.

I'm on Cytomel. I was taking a dessicated thyroid, but it was an over-the-counter supplement and the newer batches seemed to have lost potency, so I had to switch. It would be nice if I could get rid of hypothyroidism. Did you get retested and have normal levels, or do you just feel better?

It seems like I have been getting progressively better, even when I accidentally ingest gluten. My symptoms are getting less severe each time. But I really need to make sure this doesn't happen again. I would love dietary suggestions. I could use all the help I can get. I don't know if I have an egg allergy or not, but eggs don't seem to bother me. I also have never heard of lactose tablets. I do make antibodies to casein, and my body reacts to it in a similar way that it does to gluten. I don't think I'm lactose intolerant, but I try to avoid dairy altogether, so I don't know for sure.

[tarnalberry]

You may want to talk to your doctors - or a new doctor - again. I'm on supplemental testosterone (has to be compounded, 1mg/day), and it definitely makes a difference. Despite the recent articles that say that supplementing testosterone for women doesn't make a difference, that's not true for all women (even in the studies the articles with those headlines are quoting). There are doctors who will treat low hormone levels, though you may have your best luck at a gynecologist, actually... ;-)

[Kathinsearch]

Hi Emeraldskies, yes I did have blood tests taken and the thyroid tests normalized. I still get checked yearly for TSH to make sure it does not creep back up on me but it's not been positive since early 1987.

Your head injuries could have produced complications that you hav acomodated yourself to but which make dealing with life more difficult. Have you ever had neuropsychological testing done? It is facinating and the results and recommendations after the testing can open up a whole new world for you....

A psychologist specalizing in testing can do these. This for me was the definative help that gave me hope and understanding years later after I had forgotten about the injury. You should have had followup testing after you recovered, so if you have not, I suggest you look into it. The neurologists hardly know anythng about the less dramatic neurological problems like neuropathy or memory..... but the testing will show the problems.

I have seen various neurologists over the years..... originally in my adolescence & tens, for the seizures- which I presume were Celiac related because I was also taken off those meds sometime after Celiac diagnosis & treatment. I had all sorts of tests done but I was not informed of the results because I was a kid. I feel certain, and the last neuro I saw agreed, that the seizures were celiac disease related in the past and that the problems are resolved now ( by EEG) that I am gluten-free.

All tests done after diet- over the years-- were spinal tap, EEGs , nerve conduction studies, and neuro exams that always show mild sensory nerve damage mostly along the left side of my body, particularly my face. I failed the romberg test- balance is bad in that if my eyes are closed I lose sense of position, so I must stay alert to where I am walking and what I am doing when standing so I don't fall. I also had great difficulty with the finger test where you follow the doctor's finger action. I also have difficulty discerning certain vowel/consonant combination sounds , I struggled to spell backwards and was told I have visual memory impairment. I am glad that these problems did not progress. I had an non-contrast MRI in 1999 and it was ok. I had lots of neuropsychological tests done over the years that showed stablized mostly right hemisphere brain damage and memory & cognitive impairments from deeper areas the brain ( hyppocampus? ) . I hope to one day get a functional MRI_ a more definitive MRI where they can see how the brain is working while you are doing tasks.. but my insurance won't cover that at this time. My 'dementia' is stablized and that is all I need to know! I have a 8yr old boy 15 yr old girl and I am 51- I have concerns about getting alzheimers in the future so the docs keep an eye out for that.

On the Ataxia matter: I had a brief experience with Ataxia: Due to a medicine I was started on many years ago before celiac disease diagnosis. Stopped med and the ataxia and other side effects went away. I am limited in my understanding of it but I believe Frederich's Ataxia is genetically predisposed and starts in childhood. IA- Idiopathic Ataxia ( =no known cause) is the one associated with gluten toxicity but not all people with IA respond to the gluten-free diet. For those it helps, it is a dramatic response. I have not heard of children with celiac having Ataxia before the diet.

If you had this Frederich's Ataxia since childhoold, according to the info I read, you would most likely not be able to walk? Your neuro should be able to tell you which kind you have if he is an experienced neuro.... ps: I go to university medical centers for neuro and gastro because most docs don't have experience with complex patients like us. hehehe! Do you have a good neuro? Are you looking for one experienced in celiac disease? If so,write me and tell me what state you are in and I will help you find a good neuro.

On the Lactose Casein thing antibosies to one of the many proteins in milk is a problem.... ref: Open Original Shared Link

In your case, casein is the one protein in milk you cannot ingest... many foods can contain different milk proteins, so you are best to avoid all milk products. Lactose intolerance means that the body in not able to produce lactase to break down the lactose (a sugar) in milk or milk products. One would take the lactase tablets before eating dairy to help breakdown the lactose. I don't think this is a issue for you, since Casein is the problem, not lactose.... Here is a link to info on Lactose & the tablets:

Open Original Shared Link

Here is what I ate alot of when I was starting my FD diet and eliminating lactose ( milk products) until I healed enough:

Egg Omlets, mexican-like, with gluten-free Salsa or stewed tomatoes and any of the various combinations of: Tomatoes, Onions, boiled ham, frozen cut up peppers ( comes with onions, too), brocoli, rice, beans. Later when I could tolerate milk products, I added provolone or cheddar cheese.

Homemade chicken & veg rice soup or Beef veg rice soup which I made in a crock pot in the morning.

Baked Potatoes with small amount olive oil, topped with sauteed onions and or broccoli, hamburger meat, diced chicken. Sometimes I used salsa or tomatoe sauce as sauce on it.

Refried beans: I made my own; excellent source of protein & completx carbs.

corn tortilla's toasted lightly in toaster, like bread. and make peanut butter abd strawberry jam sandwhiches. ( have to eat at time of prep or they get cold & hard.

just some ideas.... let me know what you think. Sorry this is so long. my son is bugging me to take hm somewhere & I keep getting distracted . Take care!!

~Kathy

It sounds like you've had a much harder time than me.  I had a head injury as a child (a concussion and fractured skull), but I wasn't in a coma.  I just lost consciousness until they had finished cleaning me up at the hospital.  I also had a seizure after my fall (I was ejected off of my bike headfirst, and a mother of a friend drove by and saw me when it happened).  I have no idea about the lasting effects, but I did have ataxia years before that ever happened, so my head injury wasn't the cause.  I've only lost memory of the few minutes before my fall and until I regained consciousness, not of the entire event.  You have been through a lot.

The limit of my short-term memory comes with speech.  I will forget what I was going to say before I have finished the sentence.  I am assuming that yours is much more severe.  The reason I asked about the neurologist was that I wondered if you had brain calcifications, but I guess you've already explained the causes of your symptoms.  Going to a neurologist isn't high on my list of things to do at the moment.  I need some aggressive help first.  But I would like to know if I have gluten ataxia or not so I will know if things are going to get better or worse.  If it's Friedrich's ataxia, I will have permanent brain damage, but not otherwise, probably. 

I'm on Cytomel.  I was taking a dessicated thyroid, but it was an over-the-counter supplement and the newer batches seemed to have lost potency, so I had to switch.  It would be nice if I could get rid of hypothyroidism.  Did you get retested and have normal levels, or do you just feel better? 

It seems like I have been getting progressively better, even when I accidentally ingest gluten.  My symptoms are getting less severe each time.  But I really need to make sure this doesn't happen again.  I would love dietary suggestions.  I could use all the help I can get.  I don't know if I have an egg allergy or not, but eggs don't seem to bother me.  I also have never heard of lactose tablets.  I do make antibodies to casein, and my body reacts to it in a similar way that it does to gluten.  I don't think I'm lactose intolerant, but I try to avoid dairy altogether, so I don't know for sure.

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[emeraldskies]

You may want to talk to your doctors - or a new doctor - again.  I'm on supplemental testosterone (has to be compounded, 1mg/day), and it definitely makes a difference.  Despite the recent articles that say that supplementing testosterone for women doesn't make a difference, that's not true for all women (even in the studies the articles with those headlines are quoting).  There are doctors who will treat low hormone levels, though you may have your best luck at a gynecologist, actually... ;-)

<{POST_SNAPBACK}>

It is worthwhile to try to get testosterone again. I've always had long, painful, and heavy periods and killer PMS, so I don't know why I've never gone to a gynecologist. I guess I've thought I have bigger problems that needed to be addressed, but low testosterone definitely contributes to the fatigue. Ironically, people have claimed that I have high testosterone because I used to work out and was pretty toned (it has all atrophied now), but it was just due to hard work.

[emeraldskies]

Kathy: No, I have never had neuropsychological testing. In fact, I've never even heard of that term until now. I studied neuroscience in school and even went to medical school until my health got bad enough that I had to leave, so it does sound like something I would find interesting. I never learned about memory problems there, so you are right about that. I did learn about neuropathy, but maybe not all neurologists take those classes. I would love to know more about what is happening to me--one of things I like to do is to analyze things and make connections to the bigger picture.

I did have a nerve conduction velocity test and a spinal tap in the past, but they were looking to rule out other things at the time. I've never had a neurological exam. These are the areas I think I would have trouble with: motor activity (tremors at rest and while moving and fasciculations, but not of the tongue), cranial nerve tests (difficulty swallowing and a nearly absent gag reflex), muscle wasting but no paralysis (I can move without gravity but not against resistance), touching finger to nose then to the examiner's finger (I can't do this properly. I miss all of the time, and it is especially bad with my eyes closed. My proprioception is awful), gait test (I weave and can't walk in a straight line and nearly fall), and I also have Romberg's sign (I notice it most during showers, which I must take with my eyes open or I will fall).

It probably is the hippocampus, like you say. I'm glad your seizures resolved. It sounds like you still have a little limb ataxia with the finger test. Those functional MRI's sound really neat. "Dementia" sure is a misunderstood term by most people.

Yes, the Friedrich's ataxia is genetic and is degenerative. So, you do become wheelchair-bound eventually. Mine hasn't degenerated to that degree or anywhere close, so hopefully it's not Friedrich's and is gluten ataxia instead. I did have signs of it from the time that I first walked. I have also had a tremor as long as I can remember. What was the med that caused the ataxia? If it's too personal, there's no need to answer. I will look into a university medical center for my next doctor. I don't have a good neuro and would like one who is familiar with celiac disease. I live in Colorado. I would appreciate any suggestions if you have them. I have heard the same things as you about the ideopathic ataxia (except I was calling it "gluten ataxia"), but at least there is still a possibility of improvement, where there is none with the Friedrich's ataxia.

I definitely think it is best to avoid dairy altogether. What does "FD" stand for in "FD diet?" Thanks for all of the diet tips. I will try to incorporate more of those foods into my diet, but I was kind of on the right track. I eat many of those things already, but you have given me ideas for actual meals. I tend to have just one thing alone at a time (just chicken, just a potato with casein-free butter, etc). I've just recently added the refried beans, which with some sort of corn make me feel a lot better.

[Kathinsearch]

Hi Emeraldeyes.. sorry about the error. FD diet should have been gluten-free diet.

Here are a few links for info on the neuropsychological testing...

Open Original Shared Link

Open Original Shared Link

Here is a wonderful 'Brain Map'of the functions of each area of the brain:

Open Original Shared Link

I would definately get a medical center neurologist experienced in Ataxia because they would know much about the gluten effect.. Not too many in your state, but CNI looks like the most experienced in CO. If you cannot get there, go to the switchboard.com info and link below the info from CNI and search by the largest nearby city, as the there are about 150 other neurologists in your state.

Colorado Neurological Institute

Center for Movement Disorders

701 East Hampden Ave.

Suite 530

Englewood, CO 80113

(303) 788-4600

(303) 788-8854 fax

Info from their website:

APPOINTMENTS

Our specialists are happy to discuss your individual case with you. Serious inquiries only, please. For an appointment, call 303-788-4600.

Ataxia

Progressive balance and coordination problems, known as ataxia, may result from damage to or degeneration of the cerebellum. This structure in the back of the brain is responsible for many coordinated tasks such as speaking and walking. 

Recent research has revealed a wide range of cause for ataxia including more then one dozen inherited conditions. 

The CNI Movement Disorders Center provides state-of-the-art diagnostic testing and care to affected individuals with ataxia.

Ataxia. Disorders of gait are quite complex. Ataxia refers to the wide based unsteady gait and coordination difficulty usually associated with cerebellar dysfunction. Table 6 lists the most common causes of ataxia. It is important to recognize that some ataxic gaits are due to proprioceptive sensory deficits. These may occur with cervical stenosis and compression of the posterior columns of the spinal cord, vitamin B12 deficiency, neurosyphillis, malabsorption syndromes, and inherited conditions. Modern neuroimaging with magnetic resonance imaging (MRI) and genetic testing have revolutionized our ability to diagnose ataxia. Treatment of reversible conditions, such as B12 deficiency, is obviously the primary goal. Symptom management with physical therapy and oral medications may be beneficial. Genetic counseling is recommended for appropriate cases.

Table 6. More Common Ataxias

Sporadic Ataxias

Cerebellar injury (stroke, trauma, etc.)

Alcoholic degeneration

Hydrocephalus (obstructive)

Normal pressure hydrocephalus

Multiple Sclerosis

Toxin exposuresInherited Ataxias

Freidreich’s Ataxia

Spirocerebelar Ataxia (Types SCA1-7)

Vitamin E deficiency

Ataxia - Telangiectasia

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

If that is not workable, follow these instruction to locate one in your area:

Go to:

Open Original Shared Link

Look for business search.

Type in the name of the closest large city near you and CO for the state.

Type in business category: Physicians & Surgeons-Neurology

Click search

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Hope this is helpful...... and I hope trying some new meal ideas will open up your list of choices. If I recall anything else, I will write back!

~~Kathy

Kathy: No, I have never had neuropsychological testing.  In fact, I've never even heard of that term until now.  I studied neuroscience in school and even went to medical school until my health got bad enough that I had to leave, so it does sound like something I would find interesting.  I never learned about memory problems there, so you are right about that.  I did learn about neuropathy, but maybe not all neurologists take those classes.  I would love to know more about what is happening to me--one of things I like to do is to analyze things and make connections to the bigger picture. 

I did have a nerve conduction velocity test and a spinal tap in the past, but they were looking to rule out other things at the time.  I've never had a neurological exam.  These are the areas I think I would have trouble with: motor activity (tremors at rest and while moving and fasciculations, but not of the tongue), cranial nerve tests (difficulty swallowing and a nearly absent gag reflex), muscle wasting but no paralysis (I can move without gravity but not against resistance), touching finger to nose then to the examiner's finger (I can't do this properly.  I miss all of the time, and it is especially bad with my eyes closed.  My proprioception is awful), gait test (I weave and can't walk in a straight line and nearly fall), and I also have Romberg's sign (I notice it most during showers, which I must take with my eyes open or I will fall).

It probably is the hippocampus, like you say.  I'm glad your seizures resolved.  It sounds like you still have a little limb ataxia with the finger test.  Those functional MRI's sound really neat.  "Dementia" sure is a misunderstood term by most people. 

Yes, the Friedrich's ataxia is genetic and is degenerative.  So, you do become wheelchair-bound eventually.  Mine hasn't degenerated to that degree or anywhere close, so hopefully it's not Friedrich's and is gluten ataxia instead.  I did have signs of it from the time that I first walked.  I have also had a tremor as long as I can remember.  What was the med that caused the ataxia?  If it's too personal, there's no need to answer.  I will look into a university medical center for my next doctor.  I don't have a good neuro and would like one who is familiar with celiac disease.  I live in Colorado.  I would appreciate any suggestions if you have them.  I have heard the same things as you about the ideopathic ataxia (except I was calling it "gluten ataxia"), but at least there is still a possibility of improvement, where there is none with the Friedrich's ataxia. 

I definitely think it is best to avoid dairy altogether.  What does "FD" stand for in "FD diet?"  Thanks for all of the diet tips.  I will try to incorporate more of those foods into my diet, but I was kind of on the right track.  I eat many of those things already, but you have given me ideas for actual meals.  I tend to have just one thing alone at a time (just chicken, just a potato with casein-free butter, etc).  I've just recently added the refried beans, which with some sort of corn make me feel a lot better.

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[emeraldskies]

Kathy: Those were excellent links--I bookmarked them all (I actually love eMedicine). Thanks for the doctor recommendation and for providing me with all of their information! In this state, it seems like all the best medical help is in Englewood. It's pretty close to me, and I actually have family there, so I wouldn't have any trouble getting there. It will probably take me awhile to actually go. Money is really low right now. But I will try to get an appointment as soon as I can.

You have been a great help. Looking at your signature, I think your approach (being content with what you have) is mature, very worthy of respect, and shows a lot of strength, especially considering what you have been through. My best hope has always been not to be happy (which is fleeting) but to be content with what I have, but if you can accept bad situations that you are stuck with, that is even better. I probably don't have any way to help you as you have aided me, but if you would like to e-mail me, I would listen to the things that are important to you without judgment or criticism. I am pretty unhappy still about what has happened to me, so I don't think I've fully accepted it yet, and I don't know if I would be able to change the way I think at this point, but I will work on it. Take care.

Oh, and I have ordered a B12 test, and I will try to take that next week. I also plan on getting my vitamin E levels tested soon. Thanks again.

[Kathinsearch]

Hi emeraldskies! I'm glad the information is of some help to you! You don't owe me anything......and I'm doing pretty good these days with the resources I have available to me now and cannot think of anything in particular I need help with at this time but I will email you should something come up. I am sure that you will come upon someone in need of your understanding or help, so just 'pay it forward' like in the movie of that name!

I am not sure if I mentioned this to you.. if so.. just ignore the following info! :

You mentioned funds being of some issue and I can relate well to that. In the event you are finding it hard to get up the money for the doc, and if you are not employed or steadily, you always have the Colorado Division of Vocational Rebilitation Services to turn to. They can help you understand your medical situation & plan out your employment future. They help you get whatever testing or medical care you need in order to know exactly what your personal needs, impairments, strengths and limitations are that impact your ability to find and hold a job on a steady basis. They will provide you with an education in a new field either through your local college, via the internet or and their work center where you can go & be trained in a vocation that fits your needs,even if you have to commute, they will reimburse your travel costs or stay at their facility..... Most states have such a center. I went thru the State of MAryland's center for a full evaluation and that was where I got the neuropsychological testing for the head injury. You'll get a complete checkup by a team consisting of a physiatrist ( a specialist in body rehabilitation) as well as testing by physical therapy for determining muscle skeletal exercose needs; occupational therapy ( to test body & hand fine/gross motor skill see if you need special accomodations to help with activities at home or on the job; speech language pathology evaluation to determine if there is a need for therapy in these areas.... and referrals to tests and specialists which are paid for and performed by providers contracted to the state. When you go, you mention the head injuries, immune problems, possible

or tested Celiac Disease, Ataxia of childhood origin. They will get you the help you get a full explanation of your medical situation and understanding of your employment future. This information might also be of help in obtaining Social Security Disability payments. This office is connected to the State office of Disability Determination Services that Social Security Administration uses to review & evaluate Disability claims. Besides the emploment help, Vocational Rehab is a wonderful advocate and a great resource for getting connected to medical resources when you don't have the money and you need the care.

Find your lcal office and tell them you would like to see if their services can be of help to you. Tell them you have multiple medical matters and past history of a head injury. Here are the links:

MAIN Page Colorado Dtste Dovision of Rehabilitation Services:

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SERVICES:

Division Of Vocational Rehabilitation

Rehabilitation Counselors are trained professionals who specialize in the analysis of medical and vocational information, job placements, and vocational counseling. A rehabilitation counselor is ready to assist persons with disabilities in utilizing the variety of services available. Info on Services they deliver, how it works.

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Link from main page to LOCAL OFFICES: Find the one nearest you:

Open Original Shared Link

Hope all goes well..post updates as you go along and I will also post some food ideas as they come to me!

~~Kathy in Maryland

Kathy: Those were excellent links--I bookmarked them all (I actually love eMedicine).  Thanks for the doctor recommendation and for providing me with all of their information!  In this state, it seems like all the best medical help is in Englewood.  It's pretty close to me, and I actually have family there, so I wouldn't have any trouble getting there.  It will probably take me awhile to actually go.  Money is really low right now.  But I will try to get an appointment as soon as I can. 

You have been a great help.  Looking at your signature, I think your approach (being content with what you have) is mature, very worthy of respect, and shows a lot of strength, especially considering what you have been through.  My best hope has always been not to be happy (which is fleeting) but to be content with what I have, but if you can accept bad situations that you are stuck with, that is even better.  I probably don't have any way to help you as you have aided me, but if you would like to e-mail me, I would listen to the things that are important to you without judgment or criticism.  I am pretty unhappy still about what has happened to me, so I don't think I've fully accepted it yet, and I don't know if I would be able to change the way I think at this point, but I will work on it.  Take care.

Oh, and I have ordered a B12 test, and I will try to take that next week.  I also plan on getting my vitamin E levels tested soon.  Thanks again.

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[Kathinsearch]

Dear emeraldskies, You said you enjoy www.emedicine.com so here is a good reference on what a physiatrist is & does. They usually work in rehabilitation centers, aas well as in most state dept Vocational Rehabilitation centers. ~Kathy

Link:

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Adult Physiatric History and ExaminationLast Updated: October 29, 2003 Rate this Article

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Synonyms and related keywords: impairment, disability, handicap, physical agents, functional abilities, activities of daily living, ADL, electrodiagnostics, neurological and musculoskeletal examinations

Physiatry (pronounced fizz ee at' tree) is the term used to describe the specialty of physical medicine and rehabilitation. Physiatry developed in the 1930s to treat musculoskeletal and neurological disorders. The American Board of Medical Specialties recognized physiatry as a specialty in the late 1940s. Currently, 6515 physiatrists are board certified, representing 9 out of every 10 physicians practicing physical medicine and rehabilitation. Practitioners of physical medicine use physical agents in the management of diseases and disorders. These various physical agents (eg, heat, cold, electrical stimulation, electromagnetic forces, traction) promote healing and recovery. Rehabilitation is the treatment process concerned with the medical, physical, social, psychological, emotional, and vocational aspects of the patient. Rehabilitation seeks to restore or maximize the patient's functional abilities. The physiatrist earns a Doctor of Medicine (MD) or Doctor of Osteopathy (DO) degree. In the US, postgraduate training in physical medicine and rehabilitation consists of 1 year of internship in medicine and 3 years of residency training in a program recognized by the American Board of Physical Medicine and Rehabilitation (ABPMR). Board certification in physical medicine and rehabilitation requires the successful completion of the 4 years of postgraduate training followed by successful completion of a formal written examination taken in the spring of the last year of residency training) and a separate oral examination (taken 1 year after completion of residency) administered by the ABPMR once a year. The physiatrist is expected to have mastered the established and evolving biomedical and clinical information applicable to appropriate clinical care. In addition, the physiatrist is expected to demonstrate strong interpersonal skills to communicate effectively with allied health professionals such as physical, occupational, and speech therapists. Physiatrists are expected to work effectively as members or leaders of a multidisciplinary team. Physiatrists practice in a variety of settings, ranging from conventional inpatient healthcare delivery systems to highly specialized outpatient clinics for gait analysis, electrodiagnostic, and pain management. In the inpatient setting, physiatrists generally are consulted when the patient has progressed to a condition of medical stability and no longer requires acute medical and nursing care but perhaps is unable to perform the usual roles of self care and mobility well enough to be discharged home. The adult physiatric history and examination provide advice on the appropriate level of rehabilitation services required to assist the patient. Providing the appropriate level of care may involve a transfer to the inpatient rehabilitation unit with functional disabilities as the basis for admission. In the outpatient setting, the physiatrist can be found in a wide variety of services. For example, physiatrists may (1) assess adult physiatric history and perform examinations for medical-legal purposes, (2) conduct general musculoskeletal examinations for sports team physicals, (3) perform electrodiagnostic studies of almost every type of disease or condition involving the musculoskeletal and nervous system, (4) use semi-invasive (ie, nonsurgical) procedures for the treatment and management of pain, (5) evaluate and assist in the design of a prosthesis for an amputee, (6) construct treatment strategies for chronic diseases such as spinal cord injury (SCI) and cerebrovascular accidents (CVA), (7) provide medical supervision and assistance to community nursing services, and (8) perform comprehensive disability evaluations at the request of referring governmental agencies, insurance companies, attorneys, or workers' compensation judges, to name a few. The attributes of the physiatrist include the ability to review and synthesize historical information, perform a focused medical and functional examination, formulate a diagnosis that correlates to the clinical findings, and construct a comprehensive treatment/management program. In summary, the adult physiatric history and examination represent a value-added service, recognizing functional ability as an important component of overall healthcare delivery.

It sounds like you've had a much harder time than me.  I had a head injury as a child (a concussion and fractured skull), but I wasn't in a coma.  I just lost consciousness until they had finished cleaning me up at the hospital.  I also had a seizure after my fall (I was ejected off of my bike headfirst, and a mother of a friend drove by and saw me when it happened).  I have no idea about the lasting effects, but I did have ataxia years before that ever happened, so my head injury wasn't the cause.  I've only lost memory of the few minutes before my fall and until I regained consciousness, not of the entire event.  You have been through a lot.

The limit of my short-term memory comes with speech.  I will forget what I was going to say before I have finished the sentence.  I am assuming that yours is much more severe.  The reason I asked about the neurologist was that I wondered if you had brain calcifications, but I guess you've already explained the causes of your symptoms.  Going to a neurologist isn't high on my list of things to do at the moment.  I need some aggressive help first.  But I would like to know if I have gluten ataxia or not so I will know if things are going to get better or worse.  If it's Friedrich's ataxia, I will have permanent brain damage, but not otherwise, probably. 

I'm on Cytomel.  I was taking a dessicated thyroid, but it was an over-the-counter supplement and the newer batches seemed to have lost potency, so I had to switch.  It would be nice if I could get rid of hypothyroidism.  Did you get retested and have normal levels, or do you just feel better? 

It seems like I have been getting progressively better, even when I accidentally ingest gluten.  My symptoms are getting less severe each time.  But I really need to make sure this doesn't happen again.  I would love dietary suggestions.  I could use all the help I can get.  I don't know if I have an egg allergy or not, but eggs don't seem to bother me.  I also have never heard of lactose tablets.  I do make antibodies to casein, and my body reacts to it in a similar way that it does to gluten.  I don't think I'm lactose intolerant, but I try to avoid dairy altogether, so I don't know for sure.

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[emeraldskies]

Interesting. It sounds like they have extensive training and are highly qualified, especially in one of the main areas I need help with, gait disorders. The electrodiagnostics will be helpful as well. I don't know why I never came across any of this in my schooling. I really appreciate all of the information.

[Kelly Langenfeld]

I just found out that my cholesterol has taken a huge climb since being diagnosed with celiac in Feb., 2005. I realize that the diet change and healing villi have a lot to do with this, but is this a common reaction?

--Kelly