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Summary:  Bleeding Tendencies

Thank you to all the friends on the list who responded to my question on bleeding tendencies.  Every letter has been extremely helpful  and insightful.  You are a wonderful group of very caring people.
To date I have received 27 responses, most coming in over the Memorial Day week-end.  Most of the responses stated that they too had had varying degrees of bleeding external and internal, and bruises before going gluten free, and that it had stopped after being gluten free for a while which was also varying periods of time.  Some letters were very detailed and others quite brief.  Many said do not eat gluten under any circumstances.  Some didn't mention the gluten challenge of 2 pieces of white bread daily for 6 weeks which was suggested to me.  No one said to go along with the gluten challenge.  I will summarize individual letters which may take a few days considering the detailed content.  I may not get it all done today so look for a continuance.

1.  Would not eat 2 slices of bread for 6 weeks.  I know what it does and how long it takes to get over it.
2.  a.  Try time released Vitamin C- won't have to take as much since it's not washed out in the urine immediately.
     b.  Dr. at the Mayo Clinic advises more like 4 slices of bread a day for at least 6 weeks to get a good biopsy.  Given the history you describe it would probably do you in if the challenge hasn't.
    c.  An option would be antibody testing from Dr. Fine at enterolab.com.  Definately won't cause more damage.
3.  Water soluble forms of fat soluble vitamins. People with cystic fibrosis take them because they have fat malabsorption.
4.  Woke me up- I too have bled freely all my life- never connected it with celiac.
  This person had cuts that would not stop bleeding, had to take vitamin K for dentist, surgery, childbirth, could not take aspirin due to blood in urine for 10 days after dose, hematoma and severe bruising after surgery which neccesitated using sandbags for pressure to stop, then severe rashes with bleeding that no one could diagnose.  A university Doc put person on a gluten free diet and said it would take three years to get gluten and damage out of the system.  If  this person ingests gluten, bleeding problem intensifies immediately.  Rash that bleeds and bruises over minor bumps.
No longer has to take vitamin K after being gluten free.
5.  Used to bleed and have anemia  which went on for 30 years.  Now returned to normal.  Would not even eat one slice of bread for one day, no matter who suggested it.  This person has ended up in the emergency room from a slight ingestion of gluten from eating out.
6.  This person had a bleeding tendency 15 years ago when celiac became worse- minor cuts would bleed for days, spontaneous nosebleeds, mittleschmerz pain at the time of ovulation caused by minute blood now was severe pain lasting a full week.
7.  Bleeding problems are very common in undiagnosed celiac disease and gluten sensitivity.  This person was diagnosed  through enterolab.com because PCP refused to test.  Got a new PCP who understood and has CD.  This person had been on a gluten free diet for a few months and feeling wonderful.  New MD said only reason to put person through a gluten challenge was if not commited to being gluten free for life.  Suggested possibly a biopsy without the challenge.  People do go through a challenge only to remain in grey area of diagnosis.  Sme people report they have a difficult time recovering from the challenge and it may take months or years.
8.  Bleed and bruise very easily.  Vitamin K was very low.  Weight also very low.
9.  This person age 19 nearly bled to death from the nose after 3 doses of naproxen- had to go to the emergency room to stop the bleeding.  Also bruised easily.  Undiagnosed until age 41.  Bleeding was called non specific platelet aggregation disfunction.  Bleeding time twice the normal.  This person would not eat gluten if a positive response to a GF diet.
10.  Vitamin K is in abundance in lettuce.  Eat plenty with a little olive oil dressing to help absorb vitamin K.  or blend lettuce with a tiny amount of water and drink.  A juicer would be a good investment.  Vitamin C is important to treat scurvy, a bleeding gum disease.  Take it with a full meal.  Gluten challenge would be a big mistake.  Dumb idea for a very thin and ill person.  Stick to a gluten free diet.
11.  Vitamin K deficiency.  How about Vitamin K shots.
12.  Vitamin K dietary intervention.  Try Natto but some kinds are not gluten free.  Vitamin K is created by bacteria in the intestines so probiotics important to keep healthy environment in intestines.  Spinach, green cabbages, tomatoes, liver, lean meat, egg yolk, strawberries.  Vitamin K is given to infants at birth by injection to prevent hemorrhage and is given presurgically to those who have bleeding and clotting disorders.  Read The Real Vitamin and Mineral Book by Shari Lieberman and Nancy Bruning.  Vitamin K requires small amounts of dietary fat in the small intestine for absorption.  Large doses of Vitamin E can interfere with coagulant function of Vitamin K.
Do not be talked into the gluten challenge.  There is a significant chance that you will develop a resistant case with horrible symptoms which will not respond to going gluten free again.  May need vitamin K injections for a while at least since can't trust the gut to handle a pill form supplement.  May be the one thing needed that lets everything else fall into place.
13.  Bled a lot during and after surgery, black and blues, lost a lot of blood after 1st child.

Running out of room so will continue this later.  Thanks again.
Robin in Massachusetts

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