Food Tastes and Chewing

[ideamktg]

It's important that you stay in touch with your dentist.:D

[Kim]

You didn't mention what meds you're on, but a lot of meds have this side effect.  People on abx can experience this from the die-off of the bugs were trying to kill and it can show up in all bodily secretions.  My suggestion would be to be sure you are drinking lots of water.

Good luck……kim

[ideamktg]

Thank you for the replies.  Yes, I am on quite a few meds, and yes, I go to the dentist – the last visit $1800, and the visit before $1800.  Scleroderma seems to cause teeth to deteriorate, so yes, thanks, I'll try to drink more water!  Nancy Blake

[DAR]

I also have scleroderma and I have noticed that food does not taste like it use to and I sometimes have trouble swallowing things, I take doxicyline 100mg twice a day and I thought that this might be responsible for the food not tasting like it use to.  

Dar

 

[A Friend]

ndpblake,

I read a study just a few days ago that showed that when a type of xylitol chewing gum was chewed once a day, there was no measureable improvement in the health of the mouth and the number of cavities, etc.  Xylitol is a type of natural sugar that actually has a detrimental effort on organisms.  They eat it, and then it causes something to take place in their digestive systems where they meet their demise!!!  The article said the reason cranberry juice is helpful to those with bladder problems is because it has this natural substance in the cranberries. 

They gave percentages of improvement when chewed twice daily, and results improved.  Three times a day, they improved more.  When chewed four times daily, the improvements were 80% better results. 

I'll try to remember tomorrow to see if I can locate this report.  I don't have scleroderma, but I do know over the last year or two, no matter how well I care for teeth, it is obvious that things are not as well as they should be. 

AF

[ideamktg]

Dear AF,

     Thank you for the reply.  This is the second time I have replied to your reply.  The first one just disappeared.  I shall look for the Xylitol chewing gum and try it.                       Nancy Blake

         

[A Friend]

Hi Nancy,

First, I can sympathize with your losing your post.  I just completed a detailed reply to a post by JB to me, and when I clicked “preview” it vanished .  That's the 2nd time that has happened with one of these detailed messages.  It is teaching me I need to copy and paste the message I'm replying to into my Word program or OE, and create my reply to it, and then paste it into the reply box, as I don't have the mental energy to re-do it from scratch.  This doesn't happen often, but enough that I should have learned my lesson! 

Now, to your topic:  I've read that our taste buds can be greatly affected by a zinc deficiency.  You might do a search using “zinc and taste” and see what comes up.  Then maybe do a search on “zinc and dosage.”  

Be aware that zinc is a supplement that you don't want to overdo either, but I remembering reading that it is important to our nutrition. 

Also, have you ever tried the whole lemon/olive oil drink?  If not, this might help your body dump a lot of toxic waste and make lots of things better.  Our detoxification systems Phases 1 & 2 with these kind of illnesses often do not work well anyway and need help. 

Hoping if you need it that it helps your husband's cooking taste like “Mama's home cooking.” 

AF

Edit:  Just found this link that discusses zinc in depth:

 http://home.caregroup.org/clinical/altmed/interactions/Nutrients/Zinc.htm

[Lynne G.SD]

Hi,  did you check to see if your tongue was coated? I had severe systemic yeast at the very beginning of this disease and could not taste anything for months.Swallowing was a problem and I kept choking on everything I ate.This was before they even diagnosed SD.   Lynne

[ideamktg]

Dear A Friend,

     Thank you for the zinc link.  Whoever wrote that discussion of zinc deserves another degree.  What I get out of it is that I do not absorb nutrients, and therefore, maybe low in zinc.  Also, one has to determine if one is low in zinc, and that can only be accomplished with the zinc test using purified water and zinc sulphate heptahydrate. With too much, or too little zinc (I cannot remember, and if I go back to the lilnk, I lose what I have written!) one can get low in copper. All this is a lot to think about, and I shall.

     I have not been on A/P, since July 2007.  I was in the hospital for anemia and blood loss, and they told me to remove some of the stuff I was taking, like Plavix, Minocin, a Scleroderma medicine, Plaquenil, and others.  I believe the Minocin arrested the progression of Scleroderma, and when I stopped, it  progressed.  I plan to go back on the Minocin, but hesitate because it is so hard to take.  I have other medicines that require 2 hours before and 2 hours afterward.  It is a whine I know, but difficult, as there are not enough hours in a day to comply.  I never saw any improvement in the 1 and 1/2 yrs. I took it, but now do think it may have arrested the Scleroderma. 

I am most appreciative.      Nancy Blake

[ideamktg]

Dear Lynne,

     No my tongue is not coated, and I may have a yeast problem as I haven't been taking the pro-biotic stuff lately, More pills!! Thanks for your reply.  I hope you are doing ok now.          Nancy Blake

[A Friend]

[user=145]ndpblake[/user] wrote:

Dear A Friend,

     Thank you for the zinc link.  Whoever wrote that discussion of zinc deserves another degree.  What I get out of it is that I do not absorb nutrients, and therefore, maybe low in zinc.  Also, one has to determine if one is low in zinc, and that can only be accomplished with the zinc test using purified water and zinc sulphate heptahydrate. With too much, or too little zinc (I cannot remember, and if I go back to the lilnk, I lose what I have written!) one can get low in copper. All this is a lot to think about, and I shall.

     I have not been on A/P, since July 2007.  I was in the hospital for anemia and blood loss, and they told me to remove some of the stuff I was taking, like Plavix, Minocin, a Scleroderma medicine, Clindamycin, and others.  I believe the Minocin arrested the progression of Scleroderma, and when I stopped, it  progressed.  I plan to go back on the Minocin, but hesitate because it is so hard to take.  I have other medicines that require 2 hours before and 2 hours afterward.  It is a whine I know, but difficult, as there are not enough hours in a day to comply.  I never saw any improvement in the 1 and 1/2 yrs. I took it, but now do think it may have arrested the Scleroderma. 

I am most appreciative.      Nancy Blake

 

Nancy, your reply is very interesting…. and I believe begs your finding “all” of the causes of the malabsorption you can.  Meds, grains and certain other foods you may be sensitive to, and destruction of the good flora, etc. can cause changes in the membrane gut lining which, if healthy and normal, allows absorption of nutrients.  If the gut is permeable, then holes in the lining allow particles into the bloodstream that are not supposed to be able to get through; these can cause immune responses and inflammation, and other problems. 

Have you been checked for Celiac?  Even if one does not technically have celiac disease, they can have an almost identical condition known as “celiac syndrome.”  My understanding of this is that though one does not have the inherited type, their compromised gut system can be affected by gluten and other grains AS IF they had true Celiac.  My now-AP physician is very astute on this subject and has spoken about it to groups, and has much about it on her web site:  http://www.drrima.com  She usually has her patients with the type problems you mention go on a gluten-free and dairy free trial, and she has discussed this at length, and the problems surrounding these. 

To the “navy blue” highlighted area of your post, this sounds suspiciously like symptoms and problems that arise not only from malabsorption, but also caused by such as celiac syndrome.  (I will look to see where you live after I post this message.  If do-able, you might like a 2nd opinion office visit.  If not, perhaps an e-mail to her or a call might be good guidance for you.)

Replying to the “green” highlighted area:  Sounds like you need some concentrated attention to healing of dysbiosis of your gut membrane.  Nancy, even though my dx is different from yours, my own dx (wrongly dx'd for a while) is most probably Mixed Connective Tissue Disorder, and I have had some of the same serious problems with gut and malabsorption that you have had.  I made some amazing improvement after I added a quality plain whole milk yogurt with adequate liquid flaxseed oil (1 tablespoon per 100 lbs of bodyweight), and with large dosage of powdered Multidophilus probiotics stirred in, plus addition of some healthy fruit in season.  I was wasting away from 115 to 92.  Being short and smallframe, I looked worse than this sounds.  It took the better part of a year, but I was eating this twice daily as a meal or between meals.  In a few months the wasting stopped, plateaued for a few, and then gradually I began gaining back what I had lost — and miraculously for 7 years looked like the picture of health.  So, this is why I do believe that you can cure that stomach lining, even while on AP.  We can communicate further by PM, is there are any details I've omitted.  By the way, I've read numerous times that because yogurt is a cultured product, many people who have an intolerance to milk, do tolerate this 1/2 cup of yogurt or 1/4 of low fat cottage cheese (also available in “cultured” form).  Both of these cultured products are “sulphurated proteins” and are the vehicle for getting the EFA's (essential fatty acids) in the flaxseed oil into the cells of our bodies for repair.  

Best to you,

AF  

PS  Nancy, the state you are in is said to have a couple of really good AP physicians, a father and son team I believe. 

Another thought I had, am wondering if the IV Clindamycin or Cleocin might be a good course of action for you until your stomach is healed… if your stomach won't tolerate these at this time.  My own experience was that once Dr. S in Ia sent blood work to Dr. Brown's old lab (see http://www.rheumatic.org and click on “Information for You and Your Doctor” and go down to the approved labs.  The one in Maryland, I believe, is his old lab that is still in operation).  If we have a positive lab for mycoplasma (or other infection), then IVs are approved by FDA as treatment for this, and mine were covered by insurance, even Medicare at one time.  Not sure if they still cover this.   

I saw your web site.  Quite nice.  Nice picture of you, too! 

 

[ideamktg]

Dear A Friend,

     I have to read your reply again to absorb it all (just like the nutrients!).

     You must have me mixed up with another Nancy.  There are several listed in the Membership.  I have lost so much weight (mainly in the head and face), that I would never put in my picture.

     I have been checked for Celiac, but even so she put me on no wheat in diet, flax seed, etc.  I have had cancer of the small bowel and had the Whipple Operation 4 years ago.  Now I have an obstruction, and taking a mess of stuff twice a day, now doubled, so I won't have to have surgery.  We have a beautiful pool, and I cannot go in which would help the peripheral neuropathy, because of this terrible medicine.

     My nutrition doctor gave up her practice last summer in order to go somewhere in New England to study further about nutrition.  She says about what you are saying, but she is very difficult to, as I said, to absorb and comply.  She sold me an over- the- counter enzyme.  I was taking Viokase or Panokase because they took a little tiny bit of the pancreas during the Whipple Operation.  Then I started to lose weight rapidly, by not taking the Viokase, and the gastro guy went bananas, and told me to take it or else.  Immediately, I began to regain weight.  That helped in the absorption, but I am still not there.

     Anyway, I am a mess, but if I stay away for the doctor's for the next two weeks, I shall have a marvelous time.  I have been to 4 rheumatologists and they are all against A/P, but did stay with one who would prescribe Minocin reluctantly.  I went to another because he was no help – he just faced his laptop and entered information all the time I was in his office.  So, I went to another a few miles away.  I liked him, but he really had nothing to offer except blood tests and continued visits with no suggestions.  I have plenty of blood tests for other doctors.

     Thank you for all your information! I'll get busy and figure out my next step. 

    P.S.  Just read Dr. Rima's Celiac Blog about Celiac Syndrome and Anemia.  Very interesting!!  Thanks again.                      Nancy Blake

 

  

 

[A Friend]

[user=145]ndpblake[/user] wrote:

     You must have me mixed up with another Nancy.  There are several listed in the Membership.  I have lost so much weight (mainly in the head and face), that I would never put in my picture.

     I have been checked for Celiac, but even so she put me on no wheat in diet, flax seed, etc.  I have had cancer of the small bowel and had the Whipple Operation 4 years ago.  Now I have an obstruction, and taking a mess of stuff twice a day, now doubled, so I won't have to have surgery.  We have a beautiful pool, and I cannot go in which would help the peripheral neuropathy, because of this terrible medicine.

     My nutrition doctor gave up her practice last summer in order to go somewhere in New England to study further about nutrition.  She says about what you are saying, but she is very difficult to, as I said, to absorb and comply.  She sold me an over- the- counter enzyme.  I was taking Viokase or Panokase because they took a little tiny bit of the pancreas during the Whipple Operation.  Then I started to lose weight rapidly, by not taking the Viokase, and the gastro guy went bananas, and told me to take it or else.  Immediately, I began to regain weight.  That helped in the absorption, but I am still not there.

     Anyway, I am a mess, but if I stay away for the doctor's for the next two weeks, I shall have a marvelous time.  I have been to 4 rheumatologists and they are all against A/P, but did stay with one who would prescribe Minocin reluctantly.  I went to another because he was no help – he just faced his laptop and entered information all the time I was in his office.  So, I went to another a few miles away.  I liked him, but he really had nothing to offer except blood tests and continued visits with no suggestions.  I have plenty of blood tests for other doctors.

     Thank you for all your information! I'll get busy and figure out my next step. 

    P.S.  Just read Dr. Rima's Celiac Blog about Celiac Syndrome and Anemia.  Very interesting!!  Thanks again.                      Nancy Blake

 

  

 

Dark Red:  I saw your picture on your web site, not on this board site. You listed your web site in your personal information. 

Does your sentence in your post  mean that your doctor said “no flax” or that she put you “on flax” ?   With an obstruction, I can understand how your physician might not want you on ground flaxseed.  However, the flaxseed oil & yogurt, etc.,  combination might do wonders for you.  You might want to read and share this with your doctor about Dr. Johanna Budwig's research findings which turned around terminal cancer cases… to read, go to:  http://www.arthritistrust.org; then click on “Articles” and then go down to Essential Fatty Acids Are Essential; click on it and go to page 3, information begins with heading “Lost, Strayed or Stolen.”  EFAs are essential to our health. 

Nancy, with your more complicated problems you need a physician with lots of AP and other types of experience.  There is one in Georgia that is supposed to be excellent, who has talents in AP and complementary medicine.   Will send you a link to another board where he is well known.  I personally have not had contact with him, but have had a bit of awe about his track record.

AF 

[ideamktg]

Dear A Friend,

      I don't have a website, and have never given a picture of myself to anyone via the computer.  I am listed here at RBF as ndpblake, that is, in the Membership list.  Also, I live in Florida, not Georgia, so I think you are looking at another Nancy.  I'll read you later.              Nancy Blake

P.S.  I had a very difficult time getting the Message, and now I cannot find it again.  Anyway, I really don't know what you are talking about, and wish I could go back to what you said.  I have never had a website – I don't even know how to have one.  I noticed that my Profile has something written in Home Page, which has just shown up.  I did not put it there.  It is all very strange.    NMB

 

      

 

 

[nmb]

I have Scleroderma, and I ahve very dry mouth, which is one of the symptoms. It makes your sense on taste go down, as well the tolerence to eat spivy food diminshes.
 products like Biotene toothpast, mouthwash,moisturising gel help somewhat.
 
Nmb

[Author]

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