Hi Laura,
Thanks again for this information.
I'm on pins and needles....the hospital found my mom's records from 1966. I have to get my dad involved to sign a release and send them a copy of my mother's death certificate, then they'll send me the records. Amazingly, I had a great experience. The lady in records was so helpful, said she'd go over to the warehouse right away and called me within and hour with my mom's file in hand. (She couldn't tell me anything without the release). Coincidentally, she's a DES daughter and had cervical cancer. Small world.
Hopefully, it will have the information to guide me in better doctoral care for myself and my daughters or give me better peace of mind.
Becky
DES Daughters with CC / LC / MC
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi everybody, I haven't been active in expressing myself on this site, but here goes...
I'm also a DES Daughter with CC (mom's side). I also have lots of structural problems - knee replacement, osteoarthritis in the other knee, rotator cuff repair, spinal stenosis which I think are genetic from my dad's side... Am I having fun yet?!
My mom (b. 1915) was a VERY brittle Type 1 diabetic. She had my brother in 1939, became diabetic in 1941. She had 9 pregnancies. I was the last try, hence the DES - 1947. She did get breast cancer (which many of the DES mother's got) in 1972 and survived. She passed away in 1990 - cancer free, but cause unknown. My dad didn't want an autopsy done. He thought she'd put up with enough. (I am a 'card carrying' member of DES Action - http://www.desaction.org/ )
I first developed CC at age 55. At first I thought my gut problem was DES related, but my cousin also developed CC at age 55 and she was not DES exposed; her brother developed Crohns. Another cousin developed Type 1 diabetes. I feel my problems are totally autoimmune/genetic related. I've never had any food or gene research done. However, that's about to change! I see the gastro doc 7/20. I'm done trying to ignore the problem. Any suggestions as to what I should ask will be appreciated!
Bev
I'm also a DES Daughter with CC (mom's side). I also have lots of structural problems - knee replacement, osteoarthritis in the other knee, rotator cuff repair, spinal stenosis which I think are genetic from my dad's side... Am I having fun yet?!
My mom (b. 1915) was a VERY brittle Type 1 diabetic. She had my brother in 1939, became diabetic in 1941. She had 9 pregnancies. I was the last try, hence the DES - 1947. She did get breast cancer (which many of the DES mother's got) in 1972 and survived. She passed away in 1990 - cancer free, but cause unknown. My dad didn't want an autopsy done. He thought she'd put up with enough. (I am a 'card carrying' member of DES Action - http://www.desaction.org/ )
I first developed CC at age 55. At first I thought my gut problem was DES related, but my cousin also developed CC at age 55 and she was not DES exposed; her brother developed Crohns. Another cousin developed Type 1 diabetes. I feel my problems are totally autoimmune/genetic related. I've never had any food or gene research done. However, that's about to change! I see the gastro doc 7/20. I'm done trying to ignore the problem. Any suggestions as to what I should ask will be appreciated!
Bev
Hi Bev,
It does sound as though you definitely have some genetic issues, but I have no idea whether or not there is a DES connection with MC.
The food sensitivities can be most accurately determined by stool tests at Enterolab, (in Dallas, TX). Unfortunately, the blood tests are not very reliable for determining food sensitivities - their record is rather poor, due to low sensitivity. The skin tests are pretty good at detecting conventional allergies, (histamine-based reactions), but they yield too many false positives, (and in some cases, false negatives), to be of much value for determining the type of food sensitivities that affect us with MC. If you have mast cell involvement in your digestive system, though, there is a type of broad-spectrum test that may have some benefit. Unfortunately, I'm not familiar with it. Mary Beth is an expert on it, and hopefully she will see your post and respond. If not, and you feel that you may be having mast cell issues in your digestive system, you might send her a PM, to get her opinion, and the details on that test.
Unfortunately, most GI docs have been stung by worthless stool tests for food sensitivities in the past, so they believe that stool tests are not effective for detecting food sensitivities, and insurance companies are slowly becoming aware that the tests at Enterolab are reliable, so at this point, many GI docs will argue against them, and many insurance companies will not pay for the tests. Some insurance companies will pay for them, but only if a doctor orders them. The stool tests at Enterolab, though, are state of the art, and by far the most accurate, and reliable method for pinpointing food sensitivities. Enterolab also offers a DNA, (gene), test for gluten-sensitive and celiac genes, that is much more economical than the tests offered by most competing labs. Enterolab's gene tests are actually sent out to a Red Cross lab, for the actual analysis, but they do all the stool tests, in-house.
I don't know enough about the state of current technology to be able to advise you, if you are seeking any other gene testing. Much if this is still in a state of development, and scientists are just now beginning to understand the implications of gene testing for other diseases - they are learning a lot, but they still have a long way to go, obviously.
We, (IOW, those of us with MC), are 7 times more likely than the general population, to have thyroid issues, for example, so if you haven't done so recently, you might want to have your doctor check out your thyroid function, with some simple blood tests. Of course, your PCP can do that, rather than your GI doc.
Tex
It does sound as though you definitely have some genetic issues, but I have no idea whether or not there is a DES connection with MC.
The food sensitivities can be most accurately determined by stool tests at Enterolab, (in Dallas, TX). Unfortunately, the blood tests are not very reliable for determining food sensitivities - their record is rather poor, due to low sensitivity. The skin tests are pretty good at detecting conventional allergies, (histamine-based reactions), but they yield too many false positives, (and in some cases, false negatives), to be of much value for determining the type of food sensitivities that affect us with MC. If you have mast cell involvement in your digestive system, though, there is a type of broad-spectrum test that may have some benefit. Unfortunately, I'm not familiar with it. Mary Beth is an expert on it, and hopefully she will see your post and respond. If not, and you feel that you may be having mast cell issues in your digestive system, you might send her a PM, to get her opinion, and the details on that test.
Unfortunately, most GI docs have been stung by worthless stool tests for food sensitivities in the past, so they believe that stool tests are not effective for detecting food sensitivities, and insurance companies are slowly becoming aware that the tests at Enterolab are reliable, so at this point, many GI docs will argue against them, and many insurance companies will not pay for the tests. Some insurance companies will pay for them, but only if a doctor orders them. The stool tests at Enterolab, though, are state of the art, and by far the most accurate, and reliable method for pinpointing food sensitivities. Enterolab also offers a DNA, (gene), test for gluten-sensitive and celiac genes, that is much more economical than the tests offered by most competing labs. Enterolab's gene tests are actually sent out to a Red Cross lab, for the actual analysis, but they do all the stool tests, in-house.
I don't know enough about the state of current technology to be able to advise you, if you are seeking any other gene testing. Much if this is still in a state of development, and scientists are just now beginning to understand the implications of gene testing for other diseases - they are learning a lot, but they still have a long way to go, obviously.
We, (IOW, those of us with MC), are 7 times more likely than the general population, to have thyroid issues, for example, so if you haven't done so recently, you might want to have your doctor check out your thyroid function, with some simple blood tests. Of course, your PCP can do that, rather than your GI doc.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Joy Adcock
- Posts: 9
- Joined: Sun May 21, 2017 12:52 am
- Location: Ellsworth Kansas
DES daughter? ?
My mother was exposed to German measles, when she was pregnant with her 2nd son, and had a miscarriage. When she was carrying me, she developed Preeclampsia and delivered me at 28 weeks. I weighed 3lbs, 6 ozs. I had my first son, at 21, after 4 1/2 hrs of labor, my water broke first. I was on birth control pills for six years, stop the pills and got pregnant with my second son. I had to be induced , to get my contractions to work right during labor. After having my son, 3 days before my 28th birthday, my periods were Not regular. I was diagnosed with Premature Ovarian Failure at 34. I was in a Study at the NIH, for POF . Their test showed that my eggs would only develop half way, which is Ovarian Failure. My mom doesn't think she was given any drugs. (DES) How can you find out if you might be a DES daughter? 
Premature Ovarian Failure at 32, Superficial Malignant Melanoma at 40, LC at 41. Severe osteoporosis of lower spine at 52, Hypothyroidism at 53. 
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Joy
welcome to our group (and sympathies that you had to find us)
if your mother can not recall if she had the drug then I don't think there is other avenues to find out. as it is unlikely that her doctor/specialist at the time would still have records.
on a slightly different subject - by fixing my B6, zinc and magnesium deficiencies I have resolved my life long hormone/ovary issues.
( of note - mother had blood poisoning and measles while pregnant with me, my birth was induced via hormones, I was born with nutrient deficiencies and gut issues, and at age 5 I had German measles)
welcome to our group (and sympathies that you had to find us)
if your mother can not recall if she had the drug then I don't think there is other avenues to find out. as it is unlikely that her doctor/specialist at the time would still have records.
on a slightly different subject - by fixing my B6, zinc and magnesium deficiencies I have resolved my life long hormone/ovary issues.
( of note - mother had blood poisoning and measles while pregnant with me, my birth was induced via hormones, I was born with nutrient deficiencies and gut issues, and at age 5 I had German measles)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama