Hi, my name is...

[Guest guest]

I guess I will introduce myself since 'everyone else

is doing it'

My name is and I am 27 and a 3rd year PharmD

student at UCSF. My husband and 1yr old

daughter Teagan are gluten intolerant. My

father-in-law was diagnosed (unofficially) Celiac

about 26 years ago. I say unofficially because after

much testing and drama an elimination diet showed him

that gluten (and corn, for him) was a no-no. He was

not (and still isn't) willing to undergo a

scope/biopsy to confirm. At the same time his infant

daughter was hospitalized for failure to thrive until

they put her on the diet. My husband (who is 2 yrs

older than his sister I mentioned above) went through

a very bad period of depression and general

unhappiness in high school which cleared up when he

went on the diet (including no corn due to his family

hx) as well. My sister-in-law started 'cheating' on

her diet in Jr high with no ill effects and

'confessed' to her parents in high school that she was

eating gluten all the time with no issues. She still

eats gluten and corn with no problems. Her blood

tests are negative.

When my daughter arrived in May of 2005 we were very

careful about introducing gluten and corn to her diet

as well as staying on top of current research about

this topic and gluten introduction and breastfeeding

etc. All of this was done on the assumption (though

never confirmed) that the family issue was Celiac. By

about 1yr old it was clear that she too cannot

tolerate gluten and corn (and??? we're still not 100%

sure if there are other allergens as well). BUT her

reaction seemed to hint more at an allergy than celiac

(her primary symptom is INSANE bleeding diaper rash

but she also gets 'raccoon eyes' and is not

'herself'). And the reaction is the same for corn or

gluten. I decided that the most minimally invasive

way to get some idea what was going on with her was to

do the genetic screening. She does not have any

celiac genes (which makes it very unlikely she has CD)

but has 2 copies (so one is from me!) of the genes

with high propensity toward non-celiac gluten

sensitivity. As a result of this my father-in-law is

also planning to do the DNA testing as well. It will

be interesting to see what his results are.

There are certainly challenges to dealing with a

gluten intolerant child but, to be sure, its been

eased by that I've been feeding my gluten intolerant

husband for 10 years (well, only husband for 3 but

I've been cooking for him for 10). Daycare definitley

'has the message' but she's a toddler. Its just not

possible to 100% prevent her from snatching 'bad'

stuff so we still have flares. My husband also

'cheats' a fair amount on little stuff (especially

with corn which, IMO, is in many ways harder to

eliminate than gluten) because he's willing to

tolerate some consequences. So sometimes I have to

double check even things he's willing to eat (and get

him to do that as well!).

I hope it's ok for non-celiacs to utilize this list

etc since, for most intents and purposes, we're in the

same boat. Because we thought it was celiac for so

long (and it still may be for my husband and father in

law-only my daughter has been 'cleared') and I am a

health care professional I do know a fair amount about

the disease though.

Sorry for the novel!

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