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Author Topic: Humor - DS1 is finally being tested for Celiac  (Read 3285 times)

Description: But he cannot have gluten

Online YouKnowWho

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Humor - DS1 is finally being tested for Celiac
« on: November 08, 2011, 11:13:12 AM »
So here is the basic rundown.  DS1 is allergic to wheat, rye, barley and egg.  Has been off of these (minus mishaps) since he was 5mo old. 

We do have oats - mainly at breakfast or dessert.  McCann's mainly but some cereals with oats as well.  I know they are classically cross contaminated but he has done well with these so we kept them in the diet for variety.

Well I have an almost 7yo child who is 40lbs despite the fact that he eats very high fat meals and all of the time. 

I mentioned pulling the oats altogether but the dr was against that for the time being so we could get an accurate celiac testing score.  But at the same time, I don't think the small amount of oats he eats will be a factor.  She mentioned possibly scoping him but half of me says no because the chances of that finding the answer is small.  But then I also wonder if it will find something else.  Ugh.
DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA

Offline GingerPye

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #1 on: November 08, 2011, 01:48:57 PM »
How are they testing for celiac?  They did a blood test on my DS and it was negative.  She didn't feel that celiac was the problem.
DD, 23 - MA/EA/PA/env./eczema
DS, 21 - MA/EA/PA/env./asthma/passed baked milk challenge
DH - adult-onset asthma
me - env. allergies, exhaustion, & mental collapse ...

Online YouKnowWho

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #2 on: November 09, 2011, 07:28:25 AM »
They are starting with the bloodwork first.  Like I said, I don't think it will be valid.  But we will see what the other bloodwork brings about as well.

DH is negative on the bloodwork but gluten obviously gives him issues.  Even his mom is finding issues with it which is a shock because she is little Miss Gluten.

But we are looking at the possibility of scoping him to find out what is really going on as well.  Do I think it will be accurate for Celiac, no.  But she did mention the possibilty given his insanely high IgE and the amount of false positives (we are assuming since we don't see outward signs of allergic reaction) that it could be EE.  But taking that with a grain of salt because she is a pediatrician and not an allergy specialist (though definitely well versed in allergies).
DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA

Offline Janelle205

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #3 on: November 09, 2011, 05:37:39 PM »
This is probably way out there, but have you considered different types of pancreatic insufficiency.  The high fat stuck out to me - I take a prescription enzyme (Creon) that helps to digest fats.  It's normally produced in the pancreas, but some people don't produce enough - particularly people with CF, but others as well, like me.

This is TMI - do his bowel movements float?  Mine did all the time - this can be a sign that your body isn't breaking down fats correctly.  Along the same lines, really foul gas can occur as well. 
Allergic to soy, egg, tomato, apple, cherry, peach, pear, nectarine, canteloupe, watermelon, severe OAS to others, insect bites (severe to horseflies), various drugs, way too many environmental allergens, and asthma.

Offline krasota

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #4 on: November 09, 2011, 09:11:42 PM »
I couldn't do a gluten challenge, either, thanks to a IgE reaction to wheat (and cross contaminated grains still provoke allergic reactions, albeit less life threatening).  My diagnosis is based on symptoms (including nutritional deficiencies), resolution of symptoms on the GF diet, and genetic possibility. 

--
DS (04/07) eggs (baked okay now!)
DD (03/12) eggs (small dose baked), stevia
DH histamine intolerance
Me?  Some days it seems like everything.

Online YouKnowWho

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #5 on: November 14, 2011, 12:25:49 PM »
So according to DH the bloodwork all came back fine.  Waiting to hear from the dr myself because I was too sick to talk to her when she called initially.

Have an appt for a pediatric GI specialist on Wednesday.  We are having issues with white stools.  Residual results from the stomach bug or what, I don't know.  Getting him to eat anything is like pulling teeth at this point.  Part of it is shrunken belly from not eating.  Also have an appt with a nutritionist and we may just go on the thought that he does have Celiac because there is no accurate way of figuring it out. 

Janelle - from what I can tell he does not have floating fat deposits.  Ped did ask and I want to find out if it was covered in the testing or not. 

I really need to get DH in to be scoped for Celiac.  Part of it is that we need to cover about $40 more for DS2 in med bills to meet our family deductible (our year only started June 1st and one child has met and one is $40 away, how sad is that).

DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA

Online catelyn

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #6 on: November 27, 2011, 05:05:30 PM »
You have to be consuming significant amounts of gluten for the TTG test to come back positive.   The small amount of cross contamination in McCann's would be unlikely enough.  The standard is the equivalent of 4 slices of bread a day for a couple of months I believe.  Its a lot.  I'm not sure how someone who has never really been  exposed to gluten could be celiac?

Oats bother me.  Even certified GF oats.  The GI also told me no more than 1/4 cup of oats, three times a week.  I haven't had oats in ages.  Every so often I will make the kids oatmeal cookies and snag one but I always feel gross afterwards.

Online YouKnowWho

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #7 on: November 28, 2011, 08:04:33 AM »
We are in a holding pattern right now.  He cannot have the scope for a few months because the stomach bug will have caused irritation that could be misconstrued.  DH is still in a holding pattern for his scope as well for the same reason and due to DS2 not having met the deductible.

We are looking into DH and I having the genetic test.  There are some other issues happening right now (extreme muscle pain) that could be related or not.

DS has been off of oats for a few weeks and doing better.  DH gave him Lucky Charms yesterday which may have resulted in itchiness and pain today.  But it may have been from being outside or the rain today.  Lots of factors.

Will be a continuing journey.

DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA

Offline cmf

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #8 on: February 14, 2012, 04:13:16 AM »
has he ever been tested for the coeliac genes? ...edited- I just read your post again...but it doesnt look like he's been tested-that would give you a much better idea of where to go treatment wise.... The test  doesnt diagnose CD but it can rule it out if none of the genes are present. (there are 2 that are associated with cd-to have them doesnt mean that you have or will get cd but to NOT have them means that it wont ever be an issue.).

Would you consider the scope anyway to give you an idea of whats going on inside (esp. if he has white stools etc). My 'non' allergic son showed up with eosinophilic oesophagitis when we scoped him and were looking for CD. (he doesnt have cd but has this condition which was causing his symtpoms).

Good luck!
« Last Edit: February 14, 2012, 04:15:53 AM by cmf »

Online YouKnowWho

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Re: Humor - DS1 is finally being tested for Celiac
« Reply #9 on: February 14, 2012, 05:15:31 AM »
Which reminds me that I need to make the appt with the gastro for him.  I have been dealing with complaints to the hospital (ER physician who was kind enough to tell me he needs to eat gluten and I need to stop reading labels because it's obvious he has Celiac, even though trace amounts cause issues for him) and my own health issues, his have been pushed to the back burner.

Since the bug in November, he cannot handle McCann's anymore without pain and he turns down certified gluten free oats.  I didn't see any marked reaction to the GF oats, so I am not sure if it is pyschological for him or reaction.  He has tested positive for oats in the past but he has a history of false positives.

Also need to do annual allergy testing.  I can honestly say that this time around, even though we know nothing has likely changed, it's a little more than I can handle mentally.  Though I am not sure if my mental block in doing so is related to DS1's testing or DS2's testing.
DS1 - Wheat, rye, barley and egg
DS2 - peanuts
DD -  tree nuts, soy and sunflower
Me - bananas, eggplant, many drugs
Southeast USA