> assistance on this one. It seems counter-intuitive to
> me to remove breastfeeding as a nutrition source when
> the baby is having these issues.

Samantha,

I have personal experience with celiac disease and severe nutrient depletion
while nursing.  Both of my children and I have celiac, and I truly
understand this mother's concerns, as I had the same feelings and fears.  It
seems counter-intuitive in some ways to advise weaning, and I see that
because I thought it myself, until I found myself knee-deep in it and very
much fighting for my health.  I am a whole-hearted supporter of
breastfeeding and was tandem nursing at diagnosis, on course for child-led
weaning with both kids.

I was diagnosed after becoming severely ill when one child was 2y8m and the
other was 3y9m.  As bad as it sounds, my own health did not improve until my
two children weaned.  In hind-sight, if I had it to do over again, I would
have completely weaned my older child immediately as she was only nursing
3-4 times a week, night-weaned my younger child immediately, then tried to
have continued nursing him two or three times a day for as long as possible,
while actively working on helping him heal.  My older child, while celiac,
had little damage compared to me and my son.  I, on the other hand, was so
sick that I dropped 55 pounds in 3 months and didn't leave the house for
over a year.

Weaning was a decision I struggled with and agonized over for months before
I went ahead with it.  Within two weeks of weaning, I had a very noticeable
jump in energy and hydration levels- I constantly battled dehydration from
the vomiting and diarrhea that I lived with 24/7.  I was so depleted that I
was not able to function on any real level.  For several months after
diagnosis, I would black out any time I stood up, and was unable to stand
upright from joint pain and problems that would disappear when the gluten
would clear my system.

I was 5 months into the diagnosis when my 4 year old weaned after she and I
sat down and discussed it.  She saw how horribly sick I was, and we talked
about it for several weeks before she stopped.  I was almost 7 months into
the diagnosis when my younger one 'self-weaned' two months after I
night-weaned him.  I night weaned because any amount of waking for me would
bring on a violent spell of vomiting, which meant he wasn't getting to nurse
much between me throwing up, and it lead to a whole host of nighttime crying
and problems and the whole household being woken up.

After testing, we saw that even with heavy nutrient supplementation for me,
I was still not absorbing what I needed to because my small intestine was so
severely damaged.

She's likely struggling with adrenal issues, her immune system going haywire
while trying to adjust, and she's got leaky gut and chronic malabsorption of
multiple nutrients.  Her own gut is likely more damaged than that of her
child, and her nutrient absorption is likely so limited that cutting out any
foods that she doesn't have to can be even more of a nutrient limitation.  I
was lucky in that my children only had to eliminate dairy and gluten, while
I had to eliminate many foods.  For me, I had so many foods limited that
being able to have enough to eat to keep my weight stable and not drop even
more weight was very difficult, and keeping those foods down was even more
difficult.  Her doctor should be able to test her nutrient levels to give
her a good idea of how much she really is absorbing.  Celiac affects iron, B
vitamins and calcium as a minimum, and accessory damage from leaky gut can
affect the absorption of other nutrients.

Now, almost 2 years after diagnosis, I'm still partially homebound due to
accessory problems connected with the celiac, although I am much improved.
I am occasionally able to leave the house, but only when I'm having a good
day and someone else drives.  My children are back to normal other than the
permanent deletion of gluten from their diets.

You're welcome to pass my contact information along to her, I'll gladly talk
with her and tell her my experience and offer support.  She really needs
some solid measures on exactly how much malabsorption and nutrient depletion
she has before she makes the decision to wean.  If you're interested, I can
provide much more information off-list.

KerryAnn Foster
www.cookingtf.com

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