<<Disclaimer: Verify this information before applying it to your situation.>>
Healing
I just had a similar experience. I had a repeat biopsy two and a half
years after going GF. The repeat biopsy showed good improvement over the
original one, but still showed damage consistent with Celiac Sprue. I was
pretty upset because I have been very conscientious and have felt quite
well. I sent both sets of biopsy slides to Dr. Peter Green at Columbia
University Celiac Center and he assured me that for an adult, my slides
were pretty much the norm. He said that an adult might never show
completely normal villi and that the most important thing to monitor was
the blood. He said that if I kept the blood tests in the negative ranges,
I should forget about any additional biopsies. That is what I am going to
do.
-------------------
I don't think there is one timetable that fits all celiacs. Some people
heal faster; some people take longer to heal; that's how you get averages.
In my case, after diagnosis at age 54, I had a second biopsy after 1 year
on a strict GF diet; the results were similar to yours after 18 months.
However, when I had a third biopsy, at 18 months, I was completely healed.
So, maybe it just will take longer for your body to complete the healing
process. Don't get discouraged, though, the diet is helping you and you are
well along the road to recovery.
------------------------------
You are fine. I was dx in Sep of 99 and went TOTALLY gf. I am still a
strictly gf person......never intentionally ingested gluten since dx. I
went for a follow up endoscopy in august of 00. I was EXTREMELY
discouraged to read the pathology report that said "severe atophy of
intestinal lining and blunted villi". Both my gastrointestinologist (I see
a doctor at Northwestern in Chicago, only the best for me!) and I were
discouraged so much we asked the pathologist to compare the two slides side
by side and the new report said "slight" improvement. I had the same
concerns as you regarding my healing as I had heard so many celiacs talk
about no signs of sprue if they had been gf for a month or so.....anyway, I
e-mailed Dr. Joseph Murray, a celiac specialist at Mayo Clinic in Minnesota
and believe it or not, he answered me the next day. He said that if the
symptoms have subsided, I should have no concerns and it could take 3-5
years for healing depending on the severity of the damage before
diagnosis. So there you are. Keep watching your food, checking with those
manufacturers, and have faith you're healing. I will not even ask for
another endoscopy unless I have continous symptoms again. My iron levels
are up, my calcium levels are up, my brain fog is gone, as far as I'm
concerned, my gut is getting better too, if it hasn't already.
-----------------------------
My guess is that you have completely removed gluten from you diet, but that
your small intestine just hasn't healed completely. After 40 years of type
1 diabetes, I wouldn't be surprised at a slow healing rate. I think I read
somewhere that adults who are diagnosed relatively late in life may never
have 100% healing of the small intestine.
What about your symptoms? Did you have symptoms before you were
diagnosed? If so, are they still occurring, or have they disappeared? How
do you feel now compared to the way you felt before diagnosis?
MY 15 year old son was diagnosed one month after you were. His main
symptoms were growth failure and stomach aches. After 5-6 months on a gf
diet, his growth rate returned to normal. His stomach aches are 85% gone.
However, he still can't tolerate regular milk, which indicates to me that
his small intestine is not completely healed, even though his major
symptoms are gone. I think it would be a good idea for you to speak
with a very experienced Celiac doctor about your follow up biopsy. Do you
have an "expert" physician you can contact? How much do you value the
opinoin of your doctor who ordered the followup biopsy? What does he (she)
say about it? If you don't feel 100% confident with your physician, can
you get a recommendation from your local support group for a doctor you can
consult with? If you're really stuck, contact me and I'll provide you with
the names of a few doctors who specialize in CD. Maybe one of them will
reply to an email from you.
------------------------
A few weeks ago I had a follow-up biopsy to see if things were healing.
The results came back that I had "mildly blunted villi, consistent with
partially treated celiac sprue".
Ah ha! Another "mildly blunted" club member. I had my biopsy 4 years ago. I
had been GF about 3 months, then did a 1-week challenge. Could barely keep
the food in me, so the challenge was not as wheat-filled as it should have
been.
And I came back blunted villi, all heads bent at right angles and in 'crop
circle' patterns. My GI guy says it was the weirdest colon he's ever seen -
- he's been circulating my biopsy bits ever since and no one has a clue.
---------
1. If you were not having symptoms and your yearly blood test is negative
yoiu should not have had another invasive biopsy....so says Dr.
Fasano..and I totally agree. It is only a money maker for the md and a
risk for you.
2. You have had celiac disease all your life....just mnot diagnosed..so if
you are better now that you are GF ..you are still getting better. Takes
18-24 mos..so I was told at another celiac conference.
3. THUS no symptoms = no biopsy.you should be able to tell by GI symptoms
if you ar e ingesting gluten by now. And if you feel better no more
invasive procedures.
--------
Many people take a year or two to heal. And some never heal completely
and remain lactose intolerant for life.
----------
I just got an upper GI last friday and haven't got the results yet. It was
terrible in my case I ahd an insulin reaction right at lunc
h time. In hind sight I should ahve made them do it earlier. I have T-1
diabetes (1971) DH (1992) CD (1996) and psoriasis in 2000.
------------------------
DOESN'T SOUND LIKE YOURS WILL HEAL COMPLETELY , MINE DIDN'T AFTER 16 YRS
GLUTEN FREE
----------------------
I have been very careful with my diet since July 1998...I have to get my
follow up biopcies done soon...I wonder what I will get...
But it took 3 years for me to feel getting better...I had terrible rash
which did not go away until last year. I found out that I was intolerant to
casein and when stoped getting any form of cow milk stoped my rash too..
I wonder if you have another hidden intolerances other than gluten?
----------------------------------
It really varies from person to person, and especially the time to heal
will vary depending on the degree of damage at diagnosis. You never really
said how much damage you had suffered, but the more damage the longer it
would take to heal. Good luck and keep the faith you will get better
eventually.
----------------------------------
Here is an email message I recently received from Ron Hoggan, a Celiac and
author of a new book called Dangerous Grains. I had asked him a similar
question....
There are, of course, many possible explanations for the return of the
bloating and gas. I'd like to suggest two of the possibilities that are
common :
1. You may be continuing to eat traces of gluten. During the first weeks of
the diet, dramatic reductions in gluten intake may result in substantial
recovery from symptoms. However, it is common to become increasingly more
sensitive to gluten during the first year or two, forcing increasing levels
of vigilance to remain symptom free. It was quite an annoyance during my
first year, but it was also very valuable. Now, I seem to be les
s
sensitive, but I am in the habit of strictly complying with the diet. For
instance, I don't eat toast out of a toaster used for gluten-containing
bread. I won't use butter that has been used by people buttering regular
bread or toast. I probably don't need to be that fussy anymore, but it is a
habit that keeps me well, so I am reluctant to change any part of it.
2. It is also possible that you also developed some other food allergies.
During the years when gluten was causing increased intestinal permeability,
you were probably leaking a variety of food proteins into your
bloodstream. Your immune system is likely sensitized to several. You might
consider getting ELISA testing for common food allergies.
Hope that helps.
---------------------------
1-2 years is my understanding for the villi to heal. Do not know about
impact of diabetes on healing.
--------------------------
I underwent an endoscopy and colonscopy to determine why I was having
continuing, severe diarrhea inspite of following a careful gf diet for 3
years. As it turned out, my problem is microscopic colitis, which is being
successfully treated with Asacol. My gastro also stated that, while my
blood tests were negative for the first time since diagnosis, my small
intestines showed continued signs of damage, which will probably never
heal. I was suprised, I thought a careful diet led to complete healing.
Evidently not. My gastroenterologist is very experienced with celiac (his
son has celiac disease), and states that long-term damage may result in
incomplete healing, regardless of the maintenance of a careful diet. If
you are continuing to have problems, consider other posssibilities, and
remember it can take a number of years to recover enough to actually feel
right again. Hope this helps. By the way, microscopic colitis does not
lead to cancer or ulceration, which might require surgical excission, so
I'm actually feeling pretty lucky at this point!
Be well and trust your own highly trained judgement when it comes to food
----------------------------
I was diagnosed with celiac last November and when I had my endoscopy my
doctor told me it could take up to 2 years for your dueoduem to heal and
for your villi to start working.
---------------------
It usually takes about a year for the gut to heal completely, so maybe, as
you said, your diabetes has something to do with it. You could also ask
your doctor for some advice.
-----------------------
I can only tell you that I had a biopsy done 7 years into the GF diet. I
am always extremely careful and it was not fully healed at that time. I
was told by my doctor who is a celiac researcher that he expects to still
see some damage when celiac has been present for a long time--untreated
prior to diagnosis. He said that children heal very much more completely
and did not feel my diet was to blame.
A few years ago it was slightly better. These two biopsies were done
because of weight loss, and other symptoms to rule out any lymphomas. I do
not eat processed food or eat out very often. These are strong
possibilities if you/your doctor feel your diet is to blame. Also you
might recheck any meds, vitamins, etc. that you take--these formulations do
change. I felt recently that I was having problems with a medication that
the company assured me was GF. It was changed and I now feel better. May
have been gluten or something else.
*Please provide references to back up claims of a product being GF or not GF*
|
