Paging Connie (Stanz)

[Polly]

Hi Connie,

You are so correct about the importance of family history. It's a shame that more attention isn't paid to it. It seems that the only docs interested are the academic types, who often don't see a lot of real patients.

Docs are taught that the patient history is more important than the physical exam in making a diagnosis, but family history is never emphasized to the same degree. I guess that part of the problem is that, as you said, "if only they had known".......... Back then things weren't diagnosed like they are today - you mostly have to go by symptoms and not what they called it.

I have long suspected that my mom had similar problems to mine. As a child, I recall her dashing to the bathroom frequently, and she pretty much stayed housebound while I was growing up. She constantly suffered from "stomach upsets" and was always taking Alka-Seltzer. But she denied it when I asked her after I found out I had MC/gluten intolerance - in her lifetime people didn't talk about things like diarrhea. She and her mother both had Hashimoto's thyroid disease and her mom also had rheumatoid arthritis. So we are definitely a family at risk for autoimmune diseases. And who knows what other problems were kept "hidden"?

BTW, I can't stop thinking about your GF. Maybe someday you could write about it - it is so poignant and compelling.

Love,

Polly

[Rosie]

Polly, your comments about the importance of family history in figuring out medical problems really resounded with me too. A bunch of cousins have been getting together to figure out family history and especially medical issues. We met for the first time last month, and plan to meet on a regular basis on the last Monday of the month. My mom was one of 10 kids, and I counted 63 cousins so some patterns may show up. For example, I had always thought that my grandmother died of breast cancer, but it was pancreatic cancer. And one of her sons and then one of his daughters also died of pancreatic cancer. Factor V Leiden also runs through the family too. Two of the cousins had strokes as young women on birth control pills. And my sister was hospitalized with blood clots in her lungs several years ago shortly after going on hormone replacement therapy. This prompted me to get tested, and I have it too along with my daughter. One of my brothers and his daughter also tested positive. I assume my mom also has it, but she has never had a problem and is going strong at 93 years old. But at least we know to avoid any hormones and let the doctor know before any surgery so the testing may have saved us from a serious clotting problem. There hasn't been any indication of digestive issues on my Mom's side, so I'm assuming it came from my Dad, who had lots of food "allergies" and also an autoimmune skin disease, Lichen Planus, but no diarrhea......and believe me, with 2 adults, 4 kids and 1 bathroom growing up, I would have noticed. None of my siblings seem to have problems, so I may just have had bad luck in the genetic lottery.

Rosie

[Gabes-Apg]

Further to the discussion above - my father died (of cancer) when i was a child.
In the past 3 years i had a strong urging to find out 'who i am' i have spent any spare time i have researching my family history. I have managed to track my fathers side of the tree back to late 1700's (ireland)
interestingly on my mothers side there was a high rate of child mortality which i am still investigating, but this did not occur on my fathers side

direct family history - my mother was diagnosed with Crohns when she was 60. i am the youngest of 4 children and I am the only sibling to have digestions issues and due to the slight defects to my bowels have had issues all my life, so I am with Rosie I got the interesting mix of genetics


as part of my MC diagnosis I have been researching diet related to genetics..... for hundreds of years our ancestors ate the same foods, , it was a small ingredient base, and only 1 or 2 types of cooking styles. (not like the myraid of foods and cooking styles we have now)
they cooked with a fire using clay pots (natural subtances)
My diet is now mostly ingredients my ancestors would have eaten.

[Stanz]

Connie here, Polly,

Well, this has been quite the interesting day of research and I will post a link to a recent article in a new message.

Looking back, I remember filling out questionnaires about family history many times when seeing a new Dr. Reality is that I would only put in that my Mom had RA, osteoporosis, had a slight heart attack and was found to have stomach cancer at her death, my Dad had Glaucoma and went blind. I haven't filled one out since my brother died of colon cancer last year and only recently found out about the tragic history of my paternal GF and that my nephew has had a bowel resection and both his daughters have Crohn's. My oldest daughter has never been genetically tested for GS but self-dx a year ago and is GF as well as corn and rice free and it was her experience and the encouragement of my ND, who despite a negative blood test for gluten, each encouraged me to go GF 3 mos. before my dx in Oct. '09 w/both types of MC.

I also have a niece who was a Presidential Scholar coming out of HS and who that same year developed signs of what became full-blown schizophrenia, her sister's son is Autistic. This niece has never been treated/tested for allergies or food issues, despite my encouragement to do so over 30 years ago. No one in my family except for me has been genetically tested and from what I've read, since I got 1 gene from each parent, the odds are over 50% that my siblings also are GS. There is an endless history of alcoholism, depression and 2 (possibly 3) of my siblings have committed suicide. (I'd be happy to explain that via PM) They surely have/had the same genetics and had to pass them on. As I have time, I will begin to make a list of health issues and hopefully my surviving siblings will contribute, but as you might imagine we did not have a happy home and at this point I only have a relationship with one sister and one brother. All of my surviving sisters have symptoms of osteo-arthritis. The brother I speak to has had hernia problems and went GF immediately upon learning my genetic results a month ago. We don't speak often, so I have no idea if he has felt an improvement.

Someday, Polly, I feel I will write a book about my family. I have snippets here and there in my computer files that I've been saving for years now about my journey to find peace and health in life. I found peace by confronting the demons from my childhood, I found health by stubbornly researching to find answers, rather than to accept drug treatment of auto-immune diseases that have been created by the drug companies. I have made many good friends via the internet in this journey and 3 of them are like sisters to me now, have come to stay with us from as far away as Toronto and NY.

So, Rosie, since it was reading through your past posts here (which has been SO productive today), as we are only 3 hrs. away from each other and have so much in common, if you're ever up Portland way, we just have to meet. We have this and NZ in common at the very least.

Gabes - perhaps an Ancestral Eating Cookbook is in your future.

Connie

[tex]

BTW, I can't stop thinking about your GF. Maybe someday you could write about it - it is so poignant and compelling.

That same thought has crossed my mind a few times.

I agree that family history is extremely important, and it's a shame that the information available there is underutilized by our doctors. They've learned to rely on tests to do their thinking for them, (because that's so much easier than thinking).

I'm convinced that my mother had gluten issues, but she was never diagnosed with anything, and she refused to talk about it. She practically lived on crackers and "Big Red" soda water, and any strong chemical odors, made her sick, (migraines), which is a somewhat common symptom of MC. She had colon surgery, to remove a section of her colon that had become "stiff", and flattened, and resulted in a blockage. It was never clear to me whether that might have been due to ischemia, or something else.

As many of you know, (since I've posted this before), my father died in a hospital, of massive colonic bleeding. That happened 27 years ago, (March 5, 1983) when not much was known about such things. His bleeding began in mid-February, and his doctors stabilized him, and ran some tests, and then removed part of his colon. He seemed to be doing well, and after a week or so, he was moved from ICU to a room. We all breathed a sigh of relief, and went home to get some sleep, after a couple of tense weeks of constant vigil, and little sleep. During the night, he began to bleed again, and the hospital called at 2:30 in the morning, informing us that he was in critical condition. He died before any of us could get back to the hospital. In all, they had given him 133 units of blood, but he bled to death, anyway.

I also had an uncle, who died of massive bleeding, in 1962. Back then, they blamed it on ulcers, and they removed part of his stomach, twice. After my father's death, I discussed my uncle's case with a surgeon, at the hospital where he had been treated, and after reviewing the records, he agreed that the facts of the case seemed very similar to my father's issues. So now you know why I consider the fact that I am still alive, to be a miracle. I believe that I'm lucky that they decided to remove my entire colon, rather than to try to save all or part of it.

Tex

[Stanz]

Well, Geez, I am just crying for us all here. Tex, you are a miracle, and I am so grateful that you have persevered and that you dedicate so much of your fragile life to helping so many people. I know you discount your value here, but you truly are a lifesaver and I cannot express how grateful I personally am for your vigilance and care for all of us here. I'd just like to get us all together for a big group hug and cry for what we have all been through. Maybe collectively we can do something to influence research. The WORLD is slowly being poisoned. As a 60's radical, who has never stopped being political, I am doing my best not to be controversial here, but it is a struggle, and I will stop now.....

[Gabes-Apg]

Tex - you might believe that you being alive is a miracle

for all of us here in the MC family - it is a blessing

[Stanz]

Gabes: No response on the Ancestral Eating Cookbook idea? It has such a great ring to it, LOL.

[Gabes-Apg]

Connie
i am having enough trouble having enough energy to juggle work and manage the MC demon (never mind have some energy left for TK, "the keeper")
If i win the lotto , dont have to work full time then I will put that on my list as top 5 things to do!

as per the discussions on the thread about the magazine article and dee's cookbook, I cant help but wonder if people would see it as 'another fad eating plan' if people do not understand the reason or basis, then the eating concept does not have the meaning.

It is a bit like the medical profession in general (not special people like Polly) and their reaction to diet and ingredients being the main management tool for something like MC.

[Polly]

Hi All,

Your family histories are so interesting......thanks for sharing.

Rosie, I have a friend with Factor V Leiden, who found out when she had blood clots from a pregnancy.

Gabes, quite a family research project you are doing. Is it the paleo or caveman diet that you refer to? Did you know that, of the amount of time that we humans have inhabited this planet, we have eaten paleo (hunter-gatherer) for 99.5% of that time. No wonder our genes have not yet evolved enough to be able to digest large amounts of grains and dairy. You mention that the diet consisted of few ingredients. I find it interesting that this is true of most of the animal world except us humans. Some animals eat only ONE food item even. Of course, the major destructive foods that humans now eat are made of refined flour, butter, and sugar (bread, sweets, etc.). BTW, thanks for the kind words!

Connie, we also have alcoholism, depression, and TONS of ADHD in our family.

Tex, your history is more compelling each time I hear about it. Do you think there is some rare genetic condition that explains it? I haven't really researched it, but maybe some kind of gut susceptibility to massive bleeding. Did they ever see any abnormal vasculature during colonoscopy or surgery? You know, you really WERE lucky.

Love,

Polly

[tex]

Hi Polly,

I don't recall any mention of vascular changes in my case, but angiodysplasia is mentioned on my father's death certificate. Also I wonder about the possibility of an autoimmune disease, known as acquired factor VIII inhibitor.

http://bloodjournal.hematologylibrary.o ... /112/2/250

I wonder if that's routinely tested for, in cases such as these.

I'm anxious to see the endoscopy reports, and the pathology report, from my hospital stay.

Love,
Tex

[Polly]

Interesting, Tex.

As far as I remember, angiodysplasia is not inherited; neither is acquired hemophilia (the factor VIII inhibitor problem you mentioned) so we don't have anything to explain the familial pattern.

You definitely were at risk for angiodysplasia given your long-standing problems with constipation and diverticula. Do you know if it was primarily your right colon that has been involved? Also, did you suffer from nosebleeds or have little bloodblisters on your lips or skin? Have you ever had any mitral valve problems?

Love,

Polly

[tex]

Do you know if it was primarily your right colon that has been involved?

Well, of course, the first surgery, (4 years ago), was to remove a stenosis in my Sigmoid colon, but the GI docs who scoped me this time, did mention that my right-side colon had a lot of "tics", which I would assume, is rather unusual. Reading the literature, I get the impression that the right-side colon is frequently implicated in bleeding incidents.

Also, did you suffer from nosebleeds or have little bloodblisters on your lips or skin?

I never noticed either of those problems.

Have you ever had any mitral valve problems?

Not that I'm aware of.

As you probably recall, I was supposed to undergo a stress test, to check out the extent of the damage to my heart, (apparently I had an enzyme change, during the surgery, that indicated a myocardial infarction or something of that sort), but my doc thought that it would be a good idea to postpone it a week, until I was stronger. After the platelet issue was discovered, that test was apparently put on hold, (I assume that it would be flirting with disaster to undergo a stress test with an elevated platelet count, but I'm just guessing).

Anyway, I'm sure you remember that I had an echocardiogram last August, but since the cardiac events that appeared during the surgery, it's a whole new ball game.

Love,
Tex

[Stanz]

Gabes,

I've no doubt that what you say here is true:

as per the discussions on the thread about the magazine article and dee's cookbook, I cant help but wonder if people would see it as 'another fad eating plan' if people do not understand the reason or basis, then the eating concept does not have the meaning.

Every time a forward thinking doctor writes an article about environmental causes (i.e. diet, heavy metals, chemicals) the skeptics are out in force. I'm the first to admit that I'm a real conspiracy theorist, but the nasty and sarcastic comments you see on articles, for example - anything Dr. Mark Hyman writes - really makes one wonder if the drug companies, industrial polluters and fast/processed food producers don't have moles planted everywhere to protect their interests. I can see no other explanation for the out and out attacks against these people. Just the other day there was an article about the value of probiotics on a website I frequent and the majority of responses to it were that it was complete BS, that any kind of nutrients, vitamins, etc. were just a waste of money. What reason would these skeptics have to be reading these articles in the first place?

That's why any article I'd participate in about gluten free recipes would have to include the facts and research and be written in an understandable way. The advantage we'd have in working with my contact is that she has a degree in neuroscience so at least she would have basic knowledge that most people wouldn't ordinarily have when writing the article.

[ant]

Dear Connie

Every time a forward thinking doctor writes an article about environmental causes (i.e. diet, heavy metals, chemicals) the skeptics are out in force

There is not much money in diet, vitamins, minerals, sunlight and other supplements that have no patents. I am also not a conspiracy theorists, but I have worked in the field of advertising and PR for 30 years (including promoting cigarettes). A lot of money is invested in "thought leadership" and influencing public opinion.

Thank goodness for the press freedom and democratic power of the internet. Even then, only the most solid, bullet-proof spokespeople will survive the onslaught of vested interest. A serious academic backed with a little Hollywood know-how would at least get a debate going.....

Best, Ant[/i]