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Summary of Bleeding Tendencies part 2

14.  Bleeding problem when accidentally ingest or breath wheat.  Take digestive enzymes including enzyme that breaks down gluten from kirkmanlabs.com  One is a complete digestion aid for all known enzymes and the other mostly for gluten peptides- Enzyme Complete DPPIV and DPPIV Forte.  Add good bacteria lactobacillus paracasei which manufactures a great deal of vitamin K for you which stops bleeding.  Eating wheat seems to halt growth of good bacteria.
15.  Check for Von Willebrands Disease-an inherited disorder characterized by abnormally slow coagulation of blood and spontaneous nosebleeds and gum bleeding caused by deficiency of a component of factor VIII.   Excessive bleeding is common after delivery, during menstruation and after injury or surgery.
16.  Tonsils out and bled for a month.  Lacking Vitamin K the clotting factor.  Vitamin E acts as a blood thinner.  While taking Vitamin E bled easily.
17.  Please, PLEASE DO NOT EAT GLUTEN.  Trust your own judgement.
18.  Bruise very easily at slightest bump-gums bleed.  Maybe it's celiac related.
19.  Some bleeding problems until going on a GF diet.  When intestines healed enough to absorb Vitamin K it improved greatly.  Read "Before the villi are gone" at www.enterolab.com and the book Dangerous Grains.
20.  If better without gluten stick to a GF diet.  You don't need a biopsy to tell you gluten is bad for you.  Weight the benefits of a diagnosis versus the drawbacks of being deathly ill for 6 weeks.  Instead of focusing on a diagnosis, focus on taking steps to make myself as healthy as possible.  Celiac daughter has had much better luck following the advice of a natureopath who vary in knowledge and application of that knowledge.  Someone who has had experience with celiac and related malnutrition issues and a good handle on supplements and how they support the function of the organs in the body.
21.  Diagnosed by VA because of tendency to bleed.  Gluten free for 4 years with NO CHEATING AND BLEEDING STOPPED.  Labs are now excellent.  Probably takes time to normalize.  GI no 2 did a fat test on stool to see if absorbing fats yet- leads one to believe fat absorption and CD connected and will resolve with GF diet.  On gluten challenge and biopsy- This persons GI would not do it.  Gluten free diet succes was verification enough.  (Was diagnosed by labwork by GI number 1 who refused to do a biopsy with endoscopy because "nobody" has CD.
22. On  GF diet 8 years.  Just the fact that symptoms return if accidentally ingest gluten proof enough.  Who needs the pain and agony of a gluten challenge just to get a positive test result.
23. Mouth bleeding stopped when GF.
24.  Nosebleeds all my life and blackand blues.  ? low Vitamin C.  Many celiacs have chronic easy bruising.  Takes Freeda vitamins, Multivits, Vitamin C, Folic Acid 800-1600, Vitamin A.  15 minutes of sun without sunscreen 3-5 days a week.  Sunlight helps Vitamin D.  Use fresh herbs.  Eat greens for Vitamin K, Use sea salt, Eat bananas and oranges for Potassium.  Avoid gluten at all costs.  Eat at home.  This person sent wonderful information on Vitamin K including food lists.  Sounds like Vitamin K is your problem.
25.  Daughter with celiac stopped clotting.  For 2 years before she became acutely ill she was bruising, bumped into things, ataxia.  In 2002 she almost died before figuring out she had CD.  She lost a lot of weight and weighed 100 pounds, bruised all over. Vitamin K is made inthe intestine.  Gave her Solgar's Vitamin K.  No aspirin or Vitamin E because of blood thinning properties. K is a fat stored vitamin and celiacs have trouble absorbing fat in the gut.  Take with a fatty meal to increase chance of absorption.  Scary things happen in CD that doctors don't seem to know much about.
26.  Bleeding entire life- diagnosed with ITP (Immune thrombocytopenic purpura) which is dying off of platelets.  Some link between CD and ITP.  Something to do with absorption of Vitamin K.
27.  Would not ingest gluten for 6 weeks for anyone-  Try digestive enzymes lipase for fat digestion.  This persons digestion and stools normal as long as taking enzymes.
28.  Forget biopsy and stick to gluten free diet.  Sound like all problems are gluten related.
29.  My decision-  I am not going to eat 2 pieces of bread for 6 weeks to have a biopsy.  I am probably not going to another hematologist recommended by the doc that wants me to eat gluten. The hematologist that I saw 2 and 1/2 years ago did tests for Von Willebrands Disease and many other clotting and bleeding problems. I am already taking 30 billion probiotics daily since last August gradually incresing the amount by a good nutritionist until digestion was more normal.  I take Viokase 16 every time I eat and had gained 3 or 4 pounds before the 10 day gluten mistake the first week in April when I lost 7 pounds in 10 days going to my lowest weight of 97 pounds.  I am 5 feet 5 inches tall so very thin and lost a lot of muscle with the 25 pound weight loss in 6 weeks one year ago. I have just started L-Glutamine Powder about a week ago to build muscle and increase healing.  I started with 1/4 teaspoon and am working up to 1 and 1/2 teaspoons slowly.  I did have the fat absorption test in November and I  was not absorbing fat at that time,  I have been taking Folic Acid in a high dose for several years prescribed by my PCP due to the high dose and folic acid is in the normal range now,  I do eat a very healthy diet with vegetables and some fruits grown at a local farm stand.  I eat plenty of greens and vitamin K foods daily and use virgin olive oil from Trader Joe's.  Now it's almost 2 months since the last gluten mistake and I am no longer bleeding at least externally where I can see it.  I am finally feeling better and have a little energy after a two year struggle of feeling horrible and 1st year thought I was gluten free but didn't know about hidden gluten.  I have been seeing an excellent nutritionist monthly since last August and will continue to see her until I am sure things are stable.  The goal now is to reach 110 pounds- can't make it any higher at the moment as it has been such a struggle even to gain a couple of pounds and don't want a goal that seems impossible.
Now for the surprise!  Two days ago, I got the result of the gene test for CD- negative for both genes but was told it doesn't mean I don't have CD as there are other less common genes that they are not testing for yet that can be for CD.
As for not bleeding since last October unless I make a gluten mistake, my Vitamin K levels are in the high range now which means I am finally absorbing enough fat for Vitamin K although I eat very little fat as I have always had trouble with fatty foods.  Vitamin K is 1255 (normal is 80-1160).
So thank you, THANK YOU!  everthing list members advised is absolutly true for me, and all of you really helped me to make the decision to stay gluten free and feel much better than I have in a long time!  Still working to feel wonderful for the first time in my life!
Robin in Massachusetts

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