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  #11  
Old 01-13-2010, 09:09 PM
jcc jcc is offline
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Originally Posted by smi7ie View Post
Cara

Oral B12 just wouldn't work for me, we tried for 6 months and just couldn't get my levels up. Within two months of injections they were above 400. I lost my vial and had to wait due to the insurance to get it refilled so it was almost 6 months without which caused my level to drop down to 199 again. I am back up now and its only been a month, so that is a good thing. I am excited to see how this will hopefully change things. I am a very active person but within the last two years I have really went down hill, especially in with the joint pain. Its unbearable to ride my snowmobile, my favorite thing to do besides be with my family. SO anything I can do to help rid my body of this stuff I am all for. Thanks again for the input. I greatly appreciate it

Leslie
I wonder what form of B12 you tried, as well as the dosage. 1000mcg is 16,667% of rda. Some people take 5000mcg daily to get their level up, and then back off to 1000-2000mcg as a maintenance dose. Whether you get your B12 from shot or oral supplement, I would shoot for a level in the upper 25% of range or over the top. Most of us aim for at least 1000, with typical ranges set in the (150-1100) area. Different labs may vary in reference range, which is why I suggest the upper quartile or over the top.

If you did not use a dosage greater than 1000mcg daily or the methylcobalamin or dibencozide form, you might want to try again. Oral is so much cheaper and easier, and works for most. Still, I have heard from one or two others who say they required shots... but I just want to make sure you tried it with the correct dosage and type. Some people require the active forms of the vitamin (methylcobalamin or dibencozide) because they have a problem converting from cyanocobalamin.

http://www.iherb.com/Search?kw=methylcobalamin
http://www.iherb.com/Search?kw=dibencozide


http://www.aafp.org/afp/2006/0101/p65.html

Quote:
On dosage, from:
Vitamin B12 Deficiency
ROBERT C. OH, CPT, MC, USA, U.S. Army Health Clinic, Darmstadt, Germany
DAVID L. BROWN, MAJ, MC, USA,Madigan Army Medical Center, Fort Lewis,Washington

"Contrary to prevailing medical practice, studies show that supplementation with oral vitamin B12 is a safe and effective treatment for the B12 deficiency state. Even when intrinsic factor is not present to aid in the absorption of vitamin B12 (pernicious anemia) or in other diseases that affect the usual absorption sites in the terminal ileum, oral therapy remains effective.

"Although the daily requirement of vitamin B12 is approximately 2 mcg, the initial oral replacement dosage consists of a single daily dose of 1,000 to 2,000 mcg (Table 4). This high dose is required because of the variable absorption of oral vitamin B12 in doses of 500 mcg or less.19 This regimen has been shown to be safe, costeffective, and well tolerated by patients."

Regarding oral B12:
Goldman: Cecil medical textbook --- Saunders 2000
COBALAMIN DEFICIENCY.
"One option is intramuscular or subcutaneous administration of cyanocobalamin. . . . Oral cobalamin therapy in a dose of 1000 to 2000 mug/day has recently been shown to be as effective and possibly superior to the standard parenteral regimen. Both regimens give prompt and equivalent hematologic and neurologic responses, but post-treatment serum cobalamin levels are significantly higher and post-treatment methylmalonic acid levels are significantly lower with the oral regimen. Oral cobalamin, 1000 to 2000 mug [mcg]/day, is the treatment of choice for most patients."
I expect if you get your B12 level and keep it up... you will feel much better in 3-6 months time. I continued to have improvements well past the first year, but remarkable progress came early. Hang in there! Dump gluten... and you have a great chance for many positive changes . Please do keep us updated!

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How are you and your daughters doing? I read some say that they had withdrawls, that is something I am really not looking forward too having if that is the case
My daughter who is gluten free is doing very well. Her general health has much improved. Her asthma all but disappeared. The year prior to GFD she had strep throat four times, and only once in the eight years that have followed. She just doesn't get sick as often or as long as she used too. She still struggles a bit with other food intolerances. While she is extremely diligent with the gluten free part of the diet, she still dabbles on occasion with casein and other foods we know cause her troubles. Still, the neurological problems, rashes, vomiting, etc, all vanished and never returned with strict removal of gluten.

Other daughter... not on a gfd... and still suffering from chronic illness and symtpoms... frequent UTI, bloating, asthma, etc. She liked the idea that the GI we saw almost a decade ago told her a gfd was not necessary because her biopsy didn't show villous atrophy. I fear it may take her own child being sick some day to realize the importance of this all. I may be the keeper of The Gluten File, but I have a daughter who won't read it. Such is life... you can lead a horse to water....I've had to learn to let it go... or try to.

We did not notice any withdrawl symptoms in myself or my youngest. We started removing the large obvious sources of gluten almost as soon as the lightbulb went on, but then set a sundown date a month out to really start in earnest... down to the additive and cross contamination level. Maybe that helped. While I've heard of some having withdrawl symptoms, I wouldn't expect them to be severe or to last too long. Not everyone responds to the diet overnight. We were lucky and did notice obvious improvement within the first weeks, but still... it took many months for many of the symptoms to completely resolve. The hand rashes didn't stop until we removed corn (which she eventually added back and eats in moderation now).
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The Gluten File

Last edited by jcc; 01-14-2010 at 12:04 PM.
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  #12  
Old 01-20-2010, 09:06 PM
annelb annelb is offline
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I am waiting the final decision from my PCP to start either a gluten free or low gluten diet.
I would recommend going 100% gluten free. The most common reason for people not to feel better with the gluten free diet is that they are not truly gluten free. Yes, small amounts can make a difference.

I was one of the people who had withdrawal symptoms. For the first 3 days of the diet I felt worse. On day 4 I noticed my knees no longer hurt when walking down the steps. After that the symptoms, some of which I had all my life, started to fall away.

Let us know how you are doing.
Anne
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  #13  
Old 01-22-2010, 04:46 PM
smi7ie smi7ie is offline
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Zonulin~ Thank you so much for all the information, I see I somehow skipped by your post until today, and I am sorry. I am also sorry to hear about your son, how is he now?

I am not sure the level I was on for B12 but trust my doctor (this one listen to me and actually encourages me to find answers and helps me any way she can) that she was giving the right amount, I am now on 1mL/month and it has helped termendously. I don't mind the injections, I am not keen on taking pills after all the ones they were having me take in the past. I ended up having a bad reaction to one.

Anne~I talked to my PCP that very night and she said she was actually learning this stuff from me and she would advise me to do the 100% GF and see how I feel. I have been officially GF for 6 days (had a small slip up last Saturday with a bread stick, I was away from home and no money but sister had ordered bread sticks; and with my hypoglycemia I have to eat) so I would be GF free for almost 2 full weeks had it not been for that. I actually feel worse with joint pain than I did before but hoping that subsides soon. My only problem now has been trying to find stuff I can take to work for lunch. I have Rice/Corn Chex and some veggies etc. Dinner was the toughest challenge since I love pasta so much. But I cut it out and have been sticking to strickly veggies, meats. I love salads so that is pretty easy. Other than that I can't say how much different I feel. I don't have the bathroom problem so that must be a good sign . Thanks everyone, glad to have a spot to ask questions and know there is help.
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  #14  
Old 01-25-2010, 09:50 AM
annelb annelb is offline
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smi7ie - At times it takes more than removing gluten. Most of us are sensitive to other foods too. I discovered yeast makes me almost as ill as gluten. The nightshade family is commonly associated with joint pain. Corn is a big problem for many. Soy, dairy, eggs....any food can be a problem food. Dr. Wangen says he is surprised just how many people react to cane sugar. Read the Sept 09 and the Jan 10 newsletters. http://www.ibstreatmentcenter.com/7_d.htm Keep a food diary - it may help.

If you don't have problems with rice, Tinkyada makes great pasta.

You mentioned hypoglycemia - do you have diabetes or insulin resistance?
Anne
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  #15  
Old 01-25-2010, 10:40 AM
Blackcatbone Blackcatbone is offline
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Originally Posted by annelb View Post
smi7ie - At times it takes more than removing gluten. Most of us are sensitive to other foods too. I discovered yeast makes me almost as ill as gluten. The nightshade family is commonly associated with joint pain. Corn is a big problem for many. Soy, dairy, eggs....any food can be a problem food. Dr. Wangen says he is surprised just how many people react to cane sugar. Read the Sept 09 and the Jan 10 newsletters. http://www.ibstreatmentcenter.com/7_d.htm Keep a food diary - it may help.

If you don't have problems with rice, Tinkyada makes great pasta.

You mentioned hypoglycemia - do you have diabetes or insulin resistance?
Anne
All forms of sugar can cause malabsorption problems. Fructose, glucose, lactulose, sucrose .. . . You need to keep track of when and what fruits you eat and how you react, usually within about two hours of injestion. Also, honey, agave, -tol sugars. Brown rice has fructans so white rice may be easier for some. Other fructanss are onions, leeks, beans, and the list goes on. If fructans are a problem then adding the FODMAP diet to the GF can help, but it's very difficult to maintain. And some people react to some fructans and not others, so you have to experiment.
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  #16  
Old 01-25-2010, 11:52 AM
Zonulin Zonulin is offline
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I never heard the word "fructan" before, so I looked it up: http://4e.plantphys.net/article.php?ch=8&id=341 And here I thought I was pretty smart to know what a "lectin" was...

Karen
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  #17  
Old 01-25-2010, 12:00 PM
Zonulin Zonulin is offline
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Zonulin~ Thank you so much for all the information, I see I somehow skipped by your post until today, and I am sorry. I am also sorry to hear about your son, how is he now? - Smi7ie
After becoming constantly nauseated at 9 (continued for two YEARS), he is now 16, is about 5'09" tall and weighs around 112 (still pretty thin but no longer skeletal). He is very careful about what he eats - gluten has a nasty effect on him just a few hours after an accidental poisoning. We both loathe and despise conventionally-trained medical doctors and the mental health "industry" for their...unhelpful methods. With the help of Cara and Anne on this forum, we were able to push for specific medical tests which enabled us to figure out his health problems for ourselves.

Karen
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  #18  
Old 01-25-2010, 05:45 PM
Blackcatbone Blackcatbone is offline
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Originally Posted by Zonulin View Post
I never heard the word "fructan" before
Karen
I wish I hadn't. I'm doing the hydrogen breath test on the 4th to see which gasses I produce and to which sugars.
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  #19  
Old 01-25-2010, 08:38 PM
Zonulin Zonulin is offline
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Interesting about the breath test - my son has a breath test done every other year to see whether he's been reinfected with H. pylori. Once you've had H. pylori, it leaves "footprints" in your blood and you will always test positive once you've had it - hence the breath test. He finds it a lot less traumatic than having a blood sample drawn so I hope it goes smoothly for you.

Karen
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  #20  
Old 01-26-2010, 02:29 AM
Blackcatbone Blackcatbone is offline
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Originally Posted by Zonulin View Post
Interesting about the breath test - my son has a breath test done every other year to see whether he's been reinfected with H. pylori. Once you've had H. pylori, it leaves "footprints" in your blood and you will always test positive once you've had it - hence the breath test. He finds it a lot less traumatic than having a blood sample drawn so I hope it goes smoothly for you.

Karen
I've never had H. Pylori, was tested for it recently. If you search the forum Halsgluten posted some interesting info about the hydro test. I had read about it before, but his post goes into more detail than what I was aware of. I haven't been able to eat fruit, aside from berries, for about a year now. I also have problems with soy, rice, lactose and of course gluten. My main bowel issues are gas and constipation, but what's interesting is that with constipation the main culprit is methane, which I believe only about 30% of SI gas producers have a problem with. I was planning on reading up a bit more on that.

The test isn't nearly as invasive as the biopsy. You have to fast for 12 hours before, fortunately mine's at 8:15 in the AM, and the blow into a machine that takes a base reading. Then you drink a syrup mixture and have to blow into the machine every 15-20 minutes for the next two hours or so. I'm dreading it only because sugars make me feel particularly gross in large doses, especially on an empty stomach. And then there's the painful gas which feels like a knife in the gut with every step. I'm hoping they can give me something for that afterward because I'll have to catch the bus home. I'm taking the day off because later that evening I'm going to a concert and want to be able to fart it out before then. And be able to fit into my jeans as well.
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