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First I want to thank everybody for the 60+ responses I got in.  It's a 
lot of information and a lot to summarize but I'll do my best.

The most common themes were:

1.  People experiencing problems are still ingesting gluten somehow, 
someway, or have another food allergy as well.  Examining everything you 
ingest and use on your body is important.  Some recommended getting GF 
shampoos, soaps, etc
2.  For many people it takes 6 months to a year, and even longer, to get 
testing levels down to normal
3.  Looking for other factors that may contribute to GERD, such as 
bacterial overgrowth in the intestines (Candida Albicans)
4.  The importance of eating only fresh foods and staying away from 
prepared food is essential.  Also, no caffeine/soda, etc.
5.  Several types of diets were recommended (Specific Caveman Diet, Live 
Right for your Blood Type).  
6.  Elimination of most variety of foods and then gradually adding foods 
was a way to determine where you are ingesting the wrong foods.
7.  Gluten is EVERYWHERE.  I received some great lists on places to look 
for it that you wouldn’t expect (licking envelopes, steering wheels in a 
car other people drive, etc).
8.  Many people emphasized the need to have the entire house/family go GF
9.  Dairy was a major food allergen that many felt could be something 
affecting celiac.  Secondary allergens are a major problem for celiacs
10. Many people felt the Amy's frozen dinners weren't gluten free
11. My sore throat is obviously not a good thing and can lead cancer (I 
knew this, which is my primary fear at this time)
12. Several people recommended Enterolab 
(https://www.enterolab.com/Home.htm) as a method of testing myself and my 
family
13. Because my GERD symptoms are not necessarily from excess stomach acid, 
Nexiums and medications in that family are not necessarily the best thing 
for me.  The common thinking is that my acid is coming up from excessive 
belching
14. There were several recommended supplements/aids for getting the gut 
and digestive system back in order.  This included aloe vera juice, Bean-
O, Probiotics and glutamine, slippery elm powder, chamomile and green 
teas, and HCI with Pepsin.
15. Many recommended checking drugs (prescription/non-prescription), as 
they can be a major source of hidden gluten.  www.glutenfreedrugs.com was 
one web site with information
16. Keeping a food diary of everything you ingest
17. Non-traditional holistic/naturopath methods of identifying and 
treating digestive problems
18. Join a local support group!
19. Some people do not respond to being GF (refractory sprue).  I haven’t 
researched this to see if there’s a separate test for this.

There was a lot to summarize.  I am sorry if I missed anything, if anybody 
feels I left out anything important please let me know and I’ll add it to 
the summary.  Anybody looking to follow some of the treatments above would 
need to do further research, as I used the names of the supplement without 
the exact context for how they should be taken.  

So where am I at?  Since I received the flood of responses last Tuesday (5 
days ago), I have done the following:

1. Gone on a strict diet, eliminating most of the typical allergens. 
Currently I am following advice of one person and eating strictly chicken 
(without injectibles) and white rice, and only drinking bottled water.  
I’m doing this for two weeks to see how it works.  I am preparing this is 
a separate “sanitized” sink in a separate room in the house on a brand new 
George Foreman grill. I am only using paper plates and plastic 
forks/knives. The primary problem with this diet is the lack of fiber and 
constipation.  I introduced some lettuce and prune juice the last couple 
of days, hopefully that stuff is ok.  I am not feeling any better yet, in 
fact my symptoms have actually been pretty bad the last couple of days.  
If anybody can tell me if getting everything else out of my diet should 
yield a response so soon, please let me know.
2. We have not yet made the decision to go with a GF household.  I want to 
give the steps in #1 a chance to work for a couple of months.  We are 
fortunate in that we have another secondary kitchen that I can isolate my 
food preparation.  I don’t touch anything in the primary kitchen.  If I 
need to feed the kids then we getting GF food for them.  The cats are 
adjusting well to their new GF food.
3. I have ordered and gotten in several of the supplements/remedies that 
were recommended.  Obviously, I cannot do them all at once and risk 
worsening matters with some crazy cocktail of nine or ten suppliments.  
I’m still researching what I should do and which ones to focus on, and 
will work with my nutritionist, who is associated with the Celiac Center 
at Beth Israel Deaconess Medical Center in Boston.  My GI doctor is as 
well, as is my allergist.
4. I’m trying to figure out how to eat at work.  The kitchen area in the 
office is shared and the microwave is obviously very contaminated.  
5. As per #1, I have eliminated other allergens, most notably dairy.  I 
also eliminated caffeine and soda (oh my goodness, what a withdrawal 
headache).  I had been doing two cups of coffee a day and 4-6 cans of diet 
Coke every day, it’s just good to have that out of my system!  What I am 
not sure about is, if it’s dairy, should I see a noticeable change 
relatively quickly or not?
6. I have ordered the Enterolab test for myself.
7. Other family members have been tested via blood test shortly after I 
had tested positive.  Neither tested positive.  My mother tested positive 
on one of the three blood tests (apparently there’s 3 different kinds?), 
and I’m working to get her involved.  My only sibling tested negative.  

That’s what I’ve got for now, responses are still trickling in, and I 
certainly do appreciate all of the feedback and support.  I’ll see how the 
next few weeks/months go, do a TON of reading (both on web sites and a 
couple books I’ve gotten).  Please feel free to contact me for any follow-
up.

Thanks,
Scott in Boston

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