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Hello again Listmates...
First off - thank you thank you THANK YOU for taking the time to respond to
my question. The amount of responses was truly overwhelming. (I have attached
responses in their entirety to this email for your review).
Second, I didn't realize this issue was so popular. Although it disturbs me
that so many of us suffer from these issues, I am comforted to know that I'm
not alone.
And to address some of the questions that you raised - I am 27, was
diagnosed 2 years ago (brother diagnosed last year with different symptoms), tested
for lactose intolerance via breath hydrogen test and do not take any
medications.
I have been to several doctors over the years and am seeing a very well
known celiac specialist who seemed “puzzled” over the bloating. Of all people,
I thought he would be familiar with this issue. I will be sending him copies
of all of your emails so that he can see how much this problem impacts our
lives. Perhaps that will lead to future research ventures.
Wishing all of you the best & thank you again,
Mary
1) You have leaky gut syndrome...it goes with celiac. a gf diet alone will
cure it in 4 or 5 years, but you can do it in 4 months by taking "the
formula"....take with each meal one probiotics complex and one l-glutamine. they heal
the gut.
you may be borderline lactose intolerant which their test didn't pick
up..not unusual. you can test yourself by following DR COCOA'S PULSE TEST FOR
ALLERGIES....stay off a suspected food GROUP for a week...so in the case of milk,
stay off not only milk, but cheese, yogurt, butter, ice cream margarine etc.
then on an empty stomach, take your pulse and record it. then drink a half
glass of milk and wait ...30,60 90 min later take your pulse. ANY RISE ABOVE
TEN PERCENT INDICATES AN ALLERGY. go thru everything....fat content makes a
difference in reactions. Carlton Fredericks used to say that a scratch test was
only as good as the techie reading it, but in this case you are dealing with
numbers which are not subject to interpretation.
recheck your diet...you may be eating some iffy foods....go back to only
safe foods...so stay off white distilled vinegar, balsamic vinegar which have
been "cut" with white vinegar, and canola oil...write me if you want more info
on this
2) I have not experienced this problem but it sounds like a pro biotic is a
good thought and certainly can't hurt. It does sound like a food allergy. It
has all the symptoms. The best way to deal with that is to do a food
elimination and see if you can pin point the cause. It could be more than one food.
You might start by eliminating all the food allergens and go from there.
Things to think about are: Are you taking any new meds that might have
gluten in them? Are you taking any holistic or over the counter drugs that are
new?One thing that gets me is things that share the same belt as my gluten
free stuff. Corn chips from Trader joes etc. Can't eat those any more.
Also, I had an experience with a company that used to be gluten free totally
and I took the product for over two years, then suddenly they started adding
wheat starch to it. They said it was a miniscule amount but I still reacted
to it.
3) Bloating after eating can be from any number of causes. Have you tried
the
following:
** A good pancreatic digestive enzyme? I take something called DigestEnz by
Advanced Formula and it is one of the best, but it is hard to find. Can
give you a source for ordering it, if you would like....
** Take l-glutamine (Twinlabs 500 mg. caps, together with a good probiotic
before every meal; Natren's Healthy Trinity is the best, but there are others
such as Jarrows, which are also good ( take the glutamine, the probiotic
along with the digestive enzyme with the first bite or sip of a
meal, 3x a day)
** A fabulous product which is OTC called Candex for candida overgrowth; can
get this at your hfs.....
4) I have a very similar problem that seems to go away when I eliminate all
grains and starches from my diet but I'm not sure what causes it and I do not
consistently eliminate those foods. It's hard to do without pizza, bread,
potatoes, cereal, etc. all the time. If you could summarize the
responses I would be grateful, I would love to know the reason for my
bloating.
5) I also have this problem. Its very uncomfortable. I have been GF for 6
years. Let me know what you find out.
6) This may not apply to everyone but I was the same as you and found out I
was yeast intolerant. I'm OK now, no more bloating. Good luck
7) Hi, please become familiar with _www.knowthecause.com_
(http://www.knowthecause.com/) and pass on the information.
8) Yes, I have that problem. I take pro-biotics daily. What helps me greatly
is a product made by Enzymatic Therapy which I have been taking for the last
3 months.
It is called Pro-Gest-Ade. It's an enzyme supplement. I've tried other
enzyme preparations and this particular one is the only one that does the trick. I
bought it from our health food store which is run by a Celiac. She says it
is the pancreas extract that makes the difference.
9) I am having this problem now, big time. My weight also fluctuates as
much as 5 pounds from one morning to the next (both up and down). It feels to
me like there is too much in my digestive track as there is pressure on my
stomach, also. Also, I'm sure there is some water retention, because my feet
and ankles swell with the weight gain. The doctors have put me through every
test and haven't found anything except that the CT scan of my abdomen after
fasting 12 hours showed constipation. I didn't think I was experiencing
constipation as I have a huge, soft BM each morning when I wake up. I am really
frustrated that the doctors haven't been able to help me.
I'm thinking about starting a strict food elimination diet to try to figure
out which foods may be the culprits.
Back in the late 80's, this is what I experienced and it turned out that
gluten was the culprit. I felt wonderful on the gluten-free diet until just 2
years ago when after a cruise, I started having extreme steatorrhea (fatty
diarrhea) which has gradually gotten better over the past 2 years. Now it's
just weight gain and awful pressure in my upper abdomen that is not relieved by
a BM.
I'm very interested in knowing what others have to say about their
experiences, because I would like to get this solved and begin to feel better again.
It just saps my energy and I'm falling behind on household tasks. I give my
all to my job and then don't have any energy left for the evenings.
10) only one probiotic really works, VSL#3 -
_http://www.vsl3.com/VSL3/default.asp_ (http://www.vsl3.com/VSL3/default.asp) . (at least that is the info my
doctor gave me) This is the one that has been tested in all the clinical
trials. It's dreadfully expensive, but it works, whereas the others generally
don't.
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