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saintmaybe

Member Since 10 Sep 2011
Offline Last Active Jul 12 2012 04:15 PM
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#752167 Still Angry Sometimes After 2 Years

Posted by saintmaybe on 30 November 2011 - 10:59 AM

Yet another reason why trusting biopsy results would be misguided at best. In the U.S. at least, they're rarely performed correctly!

http://www.scienceda...10707092437.htm

Biopsies are only performed with the correct number of samples taken about 30% of the time. When they are performed with four or more samples, the rate of diagnosis of celiac disease increases *sevenfold.* That is just plain ignorance, malfeasance. I don't even have the words for how angry that makes me.

There is no reason whatsoever that a GI specialist should not be able to perform an endoscopy correctly. This is 2011, and this is barbaric.
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#751264 Just Flat Out Need Some Help

Posted by saintmaybe on 27 November 2011 - 04:26 PM

May I suggest seeing a chiropractor? I know, I know, not another doctor! But mine has been amazingly accepting of my self diagnosed celiac, and is monitoring my blood tests through my PCP. He's very knowledgable about nutrition and celiac, and one of the first things he said to me was, "let's see what we can do to get you off these prescriptions." he also said that the amount of daily pain I was in was unacceptable. First person in a long time in the medical community who said, let's fight! You're young and this is not cool!

He took some xrays of my lower back, and my pelvis is totally put of alignment with my spine. I also have pinched nerves and beginning arthritis. Chiropractors, in my experience, take your complaints much more seriously than MD's and have much more beneficial suggestions for improving health.
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#751256 Still Angry Sometimes After 2 Years

Posted by saintmaybe on 27 November 2011 - 03:57 PM

I got an absolutely dirty look from my doctor when I asked her about testing options for celiac. I was already Gluten-Free at that point, because gluten just makes me sick sick sick. So I shrugged and continued with the diet. I don't need special accomOdations, nor do I need someone's permission to tell me what I can and can't eat. Since september my migraines have almost completely resolved, the D and weight loss have stopped. I gained two pounds! My hair has mostly stopped falling out. Still having many joint problems, but I narrowed that down to a pretty severe case of Zinc deficiency. Two cold eeze in the morning and my snap crackle pop joints and pelvic instability have mostly resolved in just a couple days. There are great doctors out there, but mostly I've needed to be my own diagnostician and advocate.
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#748468 The Most Annoying Thing About Celiac Is...

Posted by saintmaybe on 17 November 2011 - 02:03 PM

The absolutely astounding lack of knowledge and coordination among practitioners in the medical community.
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#748258 Why Aren't Doctors Up To Speed?

Posted by saintmaybe on 16 November 2011 - 08:20 PM

There is no economic / financial incentive for the medical industry to diagnose gluten intolerance.
There aren't many in the business who would say at the end of your consultation:
"So go home and google 'gluten free diet'. Get onto this today. Call me once a week to tell me whether your symptoms are improving. If it works for stick to it for life. If it doesn't come and see me again so we can consider other diagnosis."
Patient: "What no prescription?"
DR: "No but we'll get you tested for deficiencies. You should eat lots and a variety of fruit and veg and not too much of the processed products .. just like any good diet"



I was just telling someone this today, and they were incredulous. DO I think there'san evil cabal out there actively impeding celiac research? No.

But there are other ways for celiac research and teaching not to progress.

That study you conducted? Even though it was well-controlled and exhaustively researched? Don't have to publish it, or if we do,we'll bury it somewhere completely uninteresting where only other experts *might* find it.

That research you want funded? Is this going to result in an awesome new drug that we can capitalize on? No? Well, good luck with that then, don't call us, we'll call you. Don't let the door hit you on the *** on your way out.

Not to mention the agribusiness, which has a STRONG financial incentive to keep their products as "heart healthy!" and wonderful as possible.

It's financial collusion happening on a massive, but not centrally controlled scale.
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#747390 Why Aren't Doctors Up To Speed?

Posted by saintmaybe on 14 November 2011 - 06:34 AM

The "biopsy as a gold standard" is just that. How the doctors make their gold. Even if all the other symptoms line up perfectly down a checklist, you have the genes, and a family history, unscrupulous GIs will hold off until you shell out for the endoscopy. Something many of us just aren't capable of or willing to do when we otherwise know what the issue is!
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#746356 Ugh! People Just. Don't. Get. It.

Posted by saintmaybe on 10 November 2011 - 11:54 AM

Doc put me on Prozac. I'm hopeful it will help me deal with this lifestyle. It's a very low dose since I have liver damage already, so it may take a while to have an effect. However, I'm feeling defeated. I hate that this diagnosis has broken me to the point of needing meds to enjoy life again. It's just so discouraging and upsetting.

I really don't know what else to say. :(


You're not broken, with or without the need to take medication. Celiac so profoundly screws up the body chemically, I'm surprised there aren't more people who need prozac in the early months of diagnosis. It SAVED me.

I can't stress this enough- there is nothing, NOTHING to be ashamed of by needing antidepressants. The ideal, of course, is to live a med free life, and I could write a dissertation on how the pharm industry abuses people with chronic mental and physical disabilities. But the fact is, there are drugs that work, that have been a godsend to many people. And there are situations where it's appropriate to take them for however long you need them. It doesn't make you less, it makes you MORE.
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#745038 Sarcasm About Celiac

Posted by saintmaybe on 05 November 2011 - 03:17 PM

On the other hand, you get situations like I had the other day. There's an older gentleman at work who's old school Italian who commented that I looked great. And I said, yeah, well, it's cause I finally have a handle on my celiac. He started talking about his neuropathy, his balance issues, his headaches, his digestive problems. He's been to a dozen neuros and gastros, and no one has EVER brought up celiac or GI. So I gave him blood test refs and book recs and a few recipes. He said he wished I was his doctor. Worth a million sarcastic comments. Felt like I saved a life. =D
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#741825 Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies

Posted by saintmaybe on 25 October 2011 - 05:13 PM

Can you please give some references for this Purkinje cell information? I see now that you mentioned Science this month, but could you please post the actual reference. It makes it easier to find. Thank you.



Sure!

That specific article is

Cerebellum Shapes Hippocampal Spatial Code
Science 21 October 2011:
Vol. 334 no. 6054 pp. 385-389
DOI: 10.1126/science.1207403

By C Rochefort, A Arabo, M Andre, B Poucet, and L Rondi-Reig.

There's a bunch of Purkinje cell references in the Science classic archive if you just search Purkinje, but I don't have access to those papers. Also Wikipedia has a decent overview, and Google Scholar will get you some abstracts that I browsed to get the Autism information, although I didn't necessarily quote a specific study there.

The book I quote is Wheat Belly, by William Davis, specifically the chapter on neural affects of gluten and ataxias. He has sixteen pages of mostly medical references- Six specifically reference gluten ataxia, although I will admit I haven't read those yet. They're mostly found in Brain, the Journal of Neurological/ Neurosurgial Psychiatry, and Neurology. If you want these, let me know and I'll see if I can hunt down the links.
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#741564 Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies

Posted by saintmaybe on 24 October 2011 - 08:17 PM

I am curious how Purkinje cells develop and grow in children - any idea? Thanks for the info!



It seems that Purkinje cells develop prenatally, and continue to generate their elaborate branching patterns after birth and during very young childhood (in humans I would guess 0-1 yrs or even less, but that's just a guess.) They seem to lose their ability to "bounce back" or heal from an injury pretty soon after that, but most of the developmental models have been done on rats and mice, for pretty obvious reasons (much easier to do brain surgery on a mouse than a little kid!).

A lot of the research on human Purkinje cells and children seems to be in the area of autism research. Which is not to scare you. Simply to say that neurologists have noticed a very atypical Purkinje cell appearance in Autistic children, and it has been suggested as one hypothetical cause.

Healing from the ataxias is, I personally think very possible, the younger you are and the earlier you were diagnosed from age of illness onset. The human brain is very 'plastic' or malleable in children, and parts of the brain that were injured can be retrained, or functions can be ascribed to new areas of the brain.

I think you are totally following the right steps by insisting on occupational therapy for your child. You may also want to look into safe supplementation with vitamins and minerals that are age appropriate for a child. I was struck by one neurologist's quote- fundamentally damage to the Purkinje cells results in dopamine dysfunction at the cell signaling level.

In which case, I would pursue supplements like fish oil (increases neuronal permeability), magnesium (cofactor for dopamine manufacture), folic acid, iron (another cofactor), B vitamins- B6 and B12, and also 5-hydroxytryptophan. The last is a precursor to dopamine.

Remember, not all the Purkinje cells can be gone, except maybe in an end stage celiac brain. That would probably look from the outside very much like Alzheimer's, MS, maybe Parkinson's or one of the other dementias (why ataxia seems to get worse and worse as you get older- it's cumulative damage).That is absolutely catastrophic and fatal. My supposition of why ataxic healing is so slow, is that we are training our Purkinje cells to do more with fewer helpers.
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#741398 Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies

Posted by saintmaybe on 24 October 2011 - 10:42 AM

Hey guys, I was reviewing my twitter feed this morning, and the journal Science has an abstract and article in it this month about the neurological mechanisms underlying spatiottemporal navigation. The brain cells that mediate this process are called Purkinje cells. This caught my eye, because William Davis explains in Wheat Belly, these are the exact cells that are damaged in the brain by the gluten induced autoinflammatory response. So you see, there is very real and direct brain damage occurring in Celiac and
GI. We also now have a hypothetical mechanism for how this happens. Unfortunately healing is slow to nonexistent in ataxia cases. Stopping eating gluten stops the autoimmune damage to the brain, but Purkinje cells are not known to regenerate to any great degree.
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#739870 Just Wanted To Say Thanks!

Posted by saintmaybe on 19 October 2011 - 07:06 AM

Realizing your not alone is one of the best things about this site. So many of us have been sick for so long and are labeled hypocondriacs by doctors that we eventually lose hope of ever feeling well. Once you get that label it tends to follow you and doctors wonder why some of us don't want them to see our records from past doctors. I hope there is soon a day when doctors look for celiac first rather than last and stop telling us to live off immodium and handing us scripts for antidepressants because they think everything is 'all in our heads'.



No offense to the many, many men that suffer celiac, but I think there's a huge degree a misogyny in the way celiac, and indeed a lot of the autoimmunes are treated, to this day.

I can't tell you the number of times I've heard, oh, it's just feminine problems. It's hysteria. It's hypochondria.

You know what? No. These are REAL physical problems, with real physical pains. There s nothing imaginary about diarrhea every day for months on end, 40 pounds of rapid weight loss, hair falling out, or dizziness to the point of falling over! But these have all been explained away as vague stomach problems, why aren't you happy- you're a girl?, vanity, and "clumsiness." Give me a break.

If we took women's health as seriously as we took men's, no one would consistently say that to the face of a whole class of people.
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#739795 It's Annoying!

Posted by saintmaybe on 18 October 2011 - 08:22 PM

Well, Lexi, in all fairness I do agree it's annoying and misleading for the general public when someone claims to be gluten free then eats a hamburger at a party. I have a friend like this who is celiac but still every once in awhile will eat what she wants...usually at a party that I'm at. She admits she pays dearly later, but then people wonder why I don't just let loose too.

My concern I guess is that I get so annoyed when people question my diet, and my daughter's because we never tested positive for anything, not even an allergy, but we were so sick. And I hate defending this to others. So, I feel like I shouldn't question another person's choices either...even if it's just skipping a glutenous meal now and then, which I honestly believe everyone could benefit from.



That's such an insaaaaaaane risk. Does she not get that the cancer risk ONLY decreases with a strict, 100% gluten free diet? I mean, I know we all have to die of something, but that seems so needlessly preventable. Also...painful. Ouch.
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#738981 Confused Two Kids Positive Parents Negative

Posted by saintmaybe on 15 October 2011 - 06:15 PM

Celiac is diagnosed via endoscopy/biopsy, not colonoscopy. Also, though it may be expensive, genetic testing may be worth the money, to tease out the disease vectors and relationships in your family. If you and your husband are both symptomatic as well, it's unclear whether you you both have one or two celiac genes (I suspect one since you both seem to be fairly mild, but you never know). Nevertheless, the gene types, and number of copies can give you some idea of disease severity. Bearing in mind that genetics is still a new science,and they still haven't fully mapped all of the associated celiac genes.

Also, even if you do have the genes, there's only a 40% chance of developing celiac over the span of your life. It's perfectly reasonable that your kids each potentially got one copy from you and one copy from your husband of a celiac gene. Meanwhile, your nonceliac gene may be masking the celiac gene's effects. Or your celiac gene may not be turned on at all.

With two kids in the house who are celiac, it'll probably be easier on your budget just to go gluten free at home altogether while they're there. My suspicion is you'll feel so much better, you won't want to go back eating gluten, even when you have the chance!
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#738462 The Day After I Graduate Culinary School I Have To Go Gluten Free :(

Posted by saintmaybe on 13 October 2011 - 01:47 PM

I feel so lost now. I spent the last year in culinary school (albeit very sick while there!) Not knowing gluten was the reason I was having so many problems. The day of graduation I got bombarded by flour from everyone as a joke and I think thats what set me off into the ER two days later with breathing probs, sores in my mouth, shakiness etc. Now I feel like I've lost a year of my life and a career I wanted so badly. We don't have any bakeries dedicated to gluten free cooking where I live and being a chef I would have to taste my cooking.. I dunno just wanted to vent I'm really upset over the whole thing I had plans to go to Johnson and Wales and everything.


I have no idea how difficult it is to get a small business loan where you are, but you've just identified a real market need in your area. Gluten Free is a growing market trend, fad or based on actual medical need, baking or savory, and I really don't think you have to give up your career as a chef to make it work. Lest you think you can't do it at a young age, I have a good friend who owns his own landscaping business that's going gangbusters, and he's only 27!

I also have friends online who started their own small baking businesses where they started with gluten free items out of their own homes and sold outside of businesses on the weekdays, and did farmers markets on the weekends. It might be difficult at first to make ends meet, but if cooking is your passion, there are totally ways to make it work with gluten free. It's been done before. I can hook you up on twitter if you're interested?
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