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Hi All-
The summary follows. My tests came back - I am not positive for celiac.
There is no doubt in my mind at least wheat bran if not wheat in general -
makes me run!!
The bottom line is IBS - a severe case of it. Since my brain is
programmed for GF not wheat free - any hints on that would help - I
gave up white breads ages ago as they are not supposed to be good for
you - at least then I was fat dumb and happy -eating 'healthy' (i.e.
wheat) is not for me!
I have learned a lot from this group and don't intend to leave as there is a
wealth of information to gain and for me to share - I had been at this GF
thing with a vengeance for my whole family so I am not about to abandon ship.
I will always be here to support and garner support from you.
SUMMARY
Most celiacs will feel extreme discomfort with the first time they ingest
gluten. After being GF for 7mo your reactions should be much stronger than
before. Most of us cannot takeit and several things to different people. Some
have projectile vomiting, don'tdo it. Feeling miserable means explosive
diarrhea and any of several otherreactions, including mental disorientation.=
On the other hand, some celiacsdon't feel any reactions for three days
or three weeks. Others never feel anyreactions: they have a hard time
regulating their diet because they don't knowwhen they've made a
mistake. Some may have constipation, some have pencil thinstools, some
have floating stools, some have incomplete defecation, etc. If you do
a gluten challenge,I recommend that you be back on gluten for atleast 3
months. I was on agf diet for almost 8 months before deciding to have
the biopsy. I wasonly back on gluten for 6 weeks. The biopsy showed
damage around thevilli, but no flattening of the villi. My gastro
saidthat first you wouldsee what I have and then next the flattening of
the villi. Now he thinksI have CD, but can't be sure because I don't
have all of the necessarydamage for a positive diagnosis. I wish I
would have stayed on it longerbefore doing the biopsy. I went GF for
three months Ifelt great for about 6 weeks and then became a lot lower
and mildy depressed,the first 6 weeks I was almost euphoric. Symptoms -
general malise and lack ofenergy Depression (mild) It has to be said
that I have been depressed before.I have recently given upsmoking and
felt a lot better for a while again about 6 weeks but now my brainfeels
`compressed` and I generlly feel a bit of paranoia, VERY mild
depression,I wonder wether the two reactions work on the same areas of
the brain, they dosay that it takes two years or so to get over smoking,
I still smoke some nonnicotine Herbal cigarettes and have no craving
since I went down to 5 a day ofthe mildest cigarettes before giving up.
I have also recently done agluten challenge. It lasted 6 weeks and that
was the maximum I could bear... Iwas feeling very lousy. After about two
weeks on gluten I was suffering the same symptoms that I did have before
I knew I was celiac: I had a lot ofabdominal pain, gas etc. (I'm not
"the sprue type" of celiac) I alsofound out that I had
suffered of Dermatitis Herpetiformis for 20 years, as therash I used to
have came back when I was taking gluten. Surprising was also, thatI had
to overeat when eating the wrong food and that was the reason I had
alwaysbeen a little overweight. I was hungry all the time. The biopsy
was taken2 weeks ago but it still takes a week to get the results.
Anyway, if there wasnot enough damage in my villi, I'm not sure if I can
ever make another glutenchallenge. I was much too sick and itchy and
gained some weight. I was also onbad mood... I suppose that DH
shouldalso be tested. The gastro who took thebiopsy didn't believe me
or my story about celiac symptoms from 20 year's time.I can't understand
why the doctors think that we are stupid! It is so clear. I did a
gluten challenge lastyear because I had gone GF, then decided that I
wanted a diagnosis. Bythe end of the two month challenge, I was
absolutely certain that I did not haveCeliac Disease. I was stunned
when the doctor said that I did have it.I exhibited very few
symptoms,and I gather that it took a while for the damaage to build up.
I would say that I never got tothe feeling miserable stage in that eight
weeks. I am not sure if this is helpful or not. Feeling miserable to
me isitchy eyes, drippy nose, headache, sore neck lymph nodes, - feel
just as if Ihave the flu coming on. Then later the constipation starts.
I was glutenfree for 2 years after being diagnosed with DH. I wanted to
be biopsied intestinallyso I at gluten for 9 days. It took until day 6
for me to getnauseated. My rash did not return, however, and I was
diagnosed withsubclinical celiac sprue. Sally, I tried a
glutenchallenge. It only took me 6 days to feel miserable -- stomach
pains,nausea, headaches & a kinda "loopy" drunk feeling -- so
Iquit. I don't need the darn diagnosis that bad! So now i'm GF. I may
save my pennies & do the gene test offered by EnteroLabto screen for the
gene(s) that can cause celiac. I need to know in casemy kids have it.
I was gluten free about 2 months before doing a 6 weekchallenge. I felt
miserable by the end of the first day, and it kept gettingworse for the
first month. In fact, I felt worse during the challenge than Ihad felt
before going gluten free. What is "feeling miserable" to me?In
no particular order:
1. Constant nausea, that was only slightly and temporarily helped by
anymedication, tea, or ginger that I took.
2. Pain in my upper gut like somebody's in there with a knife trying to slice
away out.
3. Tummy rumbles and squeals and bubbles and rackets, like a Scottish
marchingband at practice in my stomach, that kept me from getting rest at
night.
4. Burping when I opened my mouth to say something. (Embarrassing!)
5. Painful gas and bloating in my whole belly. All my waistbands were
tootight.
6. Diarrhea all day long, every day, every time I sat on the john. Lots
ofexploding gas with it too.
7. Confusion, depression, bad memory, no concentration, getting paranoid
aboutmy friends and family and work.
8. Dreadful fatigue. I had zero energy, and spent the last 2 weekends in
bedthe whole time. I missed only 3-4 days of work somehow, but did not get a
lotdone there.
Dehydration set in during my 3rd week, and I had fever, total confusion,
andwent into hysterics about something minor; my husband took off work to
stayhome with me, he was so worried (after that I drank as much water and
Gatoradeas I could hold, and felt a lot better re: items #7 and 8).
Oddly, I sort of got used to feeling lousy, and by the last day of my
challengeI could eat my mother-in-law's famous angelhair pasta dish without
noticing anydifference in how I felt.
But boy-o-boy, did I feel better when I finally went gluten free again!
Here's hoping you make it through your challenge and that you get a good
answerto your problems. Good luck and good health!
Sally
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