<<Disclaimer: Verify this information before applying it to your situation.>>

 

Thanks to all who replied to my recent query.  My original post is shown
below, followed by all the responses I received.

I had hoped that the GF diet could solve all our problems, but that, alas,
does not always seem to be the case!

We will continue with the testing process and evaluate his improvement.  It
may be that the gf diet will be helpful in the long run but there seems to
be no clear proof of that.

I really appreciate having this list to bounce ideas on  and get support as
we face new health challenges!

 

Becky in TX

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In checking online resources on Postural Orthostatic Tachycardia Syndrome
and dysautonomia I saw celiac disease mentioned several times.   

Among other things it was suggested that a gf diet may improve symptoms even
if celiac tests were negative. 

My son has repeatedly tested negative for CD and is very reluctant to join
his siblings and myself in a strict gf diet without hard proof.   

Has anyone on the list been diagnosed with one of these conditions, and did
a gf diet have any benefit?  

Thanks for any info you have on this topic.

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I have POTS and celiac,  a gluten free diet has helped.
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I was diagnosed with celiac 10 yrs. ago, but had symptoms all my life.  I
developed autonomic dysfunction within the past 2 years.  In my case, GF
diet seems to make no difference_________________________________________

My daughter is 14, diagnosed with Celiac at age 6 AND diagnosed with POTS
within the last year, although I think she has had it for at least the last
two years.  If that's actually what it is.  She has been on an extremely
strict gluten free diet from day one.  It's very frustrating because she's
doing everything right but more ailments keep piling on.  She's dutifully
taking all the drugs for POTS but still has stomach/headache issues.  I
would suspect there is some autoimmune aspect to everything she's
experiencing but I don't know if it stems from Celiac/gluten or if it's all
just part of the same set.

 

So I can only tell you that going completely gluten free has not eliminated
POTS symptoms.  I can't say whether the symptoms would have been worse had
she not already been gluten free...

 

I know that gluten can cause over 250 possible symptoms.  There are so many
illnesses helped with a gluten free diet.  The immune system is compromised,
and weakend by the lesser quality of food that is eaten. 

The suggestion, if Celiac Disease testing is negative, is to try a strict
gluten free diet for a time ?(2 weeks or more)? and see if there is
improvement in symptoms/health. 

No, I am not a professional, I have just lived a gluten free lifestyle since
2003 due to Celiac Disease diagnosis and have helped many. 

Hope you get answers.

Dr Allesio Fascano,a top pediatric gastroenterologist in the field of CD,
would likely do a biopsy on your son even w/negative labs. There are plenty
of celiacs out there w/negative labs. Then even if that were negative for
celiac disease, he would likely consider your son's entire history to
determine if he might have Gluten Sensitive Enteropathy. Perhaps you cannot
travel to him, but maybe you'd want to try to contact him for advice? 

 

First, CD is a serious and potentially life-threatening disease...over the
long haul...and must be taken serious.

It is particularly critical for youngsters who may still be growing...but it
is critical for all who have the disease.

There is better understanding now of how to test for celiac now....there are
a "cascade" or protocol of tests...(.most blood tests )before you go running
for gut biopsies...

(Look at Mayo Clinic websites for this...most doctors don't know anything
about this disease or proper testing for it...or what labs do a credible
job.)

You can also go for what I consider the gold standard....and that is a
genetic test that will tell you who is carrying the gene.  (Best

Lab:  Prometheus on the West Coast...you can draw blood anywhere and send it
to them...)

However it is also true they have now learned (and admit) that "gluten
sensitivity" and intolerance are also very serious conditions.  These may
not show on a biopsy or standard blood test...but can be established

   by , among other things, going gluten free.

The gluten free world is an easier place than it used to be....re food and
awareness. 

There is a great organization called ROCK (raising our celiac kids)....take
a look.

Re food sensitivities and tachycardia syndrome, though I am celiac and
adhere to a strict GF diet, I have also learned that I am prone to reaction
(very nasty reactions involving tachy-symptoms) in relation

    to tannens and tyramines in foods (which appear in increased amounts as
food ages....) and that these substances can cause me great grief, too...but
my situation may have nothing to do with your family at all.

 

Also, obviously, the usual suspects: all caffeine, chocolate, coffee, aged
cheeses, etc etc...

It's complicated and highly individual to each person..

 

Nothing to do with the problems you are worried about but we had something
similar. MY youngest son became a diabetic at 17 months.  We were told at
the time that there was a fairly good, or bad, chance that one of the other
children would become a diabetic.   This was not type 2 but insulin
dependent diabetics which cannot be controlled by diet alone.  

The children at home were of course  eating the same food that Marc did and
were raised on a healthy diet but once they had left home they were apt to
stray with no problems.  One of them became a diabetic at 35.  That would
have been a long time and unnecessary until the last year.

I would suggest that you do not argue with you son, just point that he
should be aware of the chance that in the future it may appear in himself or
his children.

My youngest daughter eats the unhealthy food that her husband likes and has
shown no sign of becoming a diabetic.  Not that it might not happen.

I would say do that worry but I know that is not possible.  Every time one
of my children got up at night to go to the bathroom I would know it was the
first sign of diabetes.  You will be the same about dysatonomia...which I
had never heard of.

 


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