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jtolpin

Newly Dx'ed, Perhaps, But Not New To Auto Immunes...

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Hiya! Looks like we're in the right place.

History:

Me - dx'ed MS 3 or so yrs ago (My mom had it as well)

Wife - graves (dx'ed this year) and peanut allergy. thyroid issue runs in her family.

DD#1 - NKA

DD#2 - multiple food allergies (from day 1) including: milk, egg, nuts, peanuts et al.... outgrown (possibly) wheat allergy. dx'ed with T1D 2 yrs ago - pumping Humalog now.

DD#3 NKA's - but JUST had vomitting/stomach problems, etc... ped did a tTG and came back 50 (she was on gluten at the time). Told us it was Celiac. Have appt with Boston-Childrens in a couple weeks. (We're familiar with Childrens, as #2 as her allergist there, and familiar with Joslin as well)

So, now, we're gluten-free for her. Dont want to do a scope on her (she's 9). Do we REALLY need to? Shes off gluten, seems to be SO much better.... was a tough week or so, but we think we know why she was ill. going thru a scope, shed need to be back on gluten, and we know shes feeling better now.

Next step? Any?

thx!

Jason

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Hi Jason,

The next step is to hang out on this forum and ask questions and read, read, read! :D

Endscopy at this point would be quite an ordeal for her to go through with needing to eat gluten for 2 or 3 months and damage her insides enough to be seen. I wouldn't do that to a kid myself. The big payoff for having an "official" gold standard biopsy diagnosis is .., hang on I am thinking,...um,. well, it ain't much. The risks though are real, as she will encur damage that may stunt her growth and development in ways that are not fully known.

But the doctor will have his curiosity satisfied. Maybe that's important somehow, but I can't imagine how.

Since she is improving on the gluten-free diet that is the main thing to know. There are some tests your doctor can do that would help tho. They could check her vitamin and mineral levels. She may be low on some needed nutrients due to mal-absorbtion.

Some starting the gluten-free diet tips for the first 6 months: ( you don't have to read all these the same day :D)

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Celiac Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

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Thank you. Not new to avoiding gluten, as we were neocate only for #2 and know the food allergy version....

Why avoid dairy? Bad for guts? Dairy allergy? I'd ate to think we'd have to RAST Meghan. SHe showed no signs of anything til this..... truly, none.

Blah!

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YOU NEED TO GET THE WHOLE FAMILY TESTED! yes, I am yelling!

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YOU NEED TO GET THE WHOLE FAMILY TESTED! yes, I am yelling!

Why test the whole family?

Im reminded of our allegist's comments way back when, when we wanted to RAST test everything under the sun, and she said 'What are you going to do with the results'?

If DD#1 tested positive, would we withhold gluten? I dont know.

Likewise for #2 - there are no signs, so why go where there isnt an issue?

And as for me/wife? Im sure we would be carriers of something, given our history, but theres no trouble, so why look for it?

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... and we dont go out often (or ever) as a family given #2 allergies/T1D - not worth it, mostly... we dont make eerything from scratch, but we have a good background of avoidance.. we know a lof of what to look for... not its just one more step.

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Thank you. Not new to avoiding gluten, as we were neocate only for #2 and know the food allergy version....

Why avoid dairy? Bad for guts? Dairy allergy? I'd ate to think we'd have to RAST Meghan. SHe showed no signs of anything til this..... truly, none.

Blah!

You need to get your other kids tested, especially DD#2!!! Type 1 diabetes is a risk factor for celiac and it can be silent.

I wouldn't put her through the biopsy if she were my child, as long as her doctor is willing to firmly diagnose celiac for her school. Some teachers are unbelievably uncaring about celiac kids. Other board members have had a lot of trouble getting accommodations in college dorms and cafeterias without a formal diagnosis. If that happens, you need to have good enough documentation to invoke ADA section 504. It's worth putting her back on gluten and getting the scope if you encounter any resistance from her doctors about writing a letter that will satisfy the school and eventually her college for ADA.

There are two issues with dairy, and you only have to try removing it if Meghan isn't doing as well as you and she would like. First, celiacs tend to be lactose intolerant until they heal. Second, gluten and casein are sister proteins and about 50% of celiacs have some degree of sensitivity to casein. The only way to pick up casein sensitivity in celiacs is elimination and challenge. It will not show up on RAST as the reaction is IgA mediated so you don't have to RAST her.

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You need to get your other kids tested, especially DD#2!!! Type 1 diabetes is a risk factor for celiac and it can be silent.

I wouldn't put her through the biopsy if she were my child, as long as her doctor is willing to firmly diagnose celiac for her school. Some teachers are unbelievably uncaring about celiac kids. Other board members have had a lot of trouble getting accommodations in college dorms and cafeterias without a formal diagnosis. If that happens, you need to have good enough documentation to invoke ADA section 504. It's worth putting her back on gluten and getting the scope if you encounter any resistance from her doctors about writing a letter that will satisfy the school and eventually her college for ADA.

There are two issues with dairy, and you only have to try removing it if Meghan isn't doing as well as you and she would like. First, celiacs tend to be lactose intolerant until they heal. Second, gluten and casein are sister proteins and about 50% of celiacs have some degree of sensitivity to casein. The only way to pick up casein sensitivity in celiacs is elimination and challenge. It will not show up on RAST as the reaction is IgA mediated so you don't have to RAST her.

Ooh! Interesting indeed... As far as the ped goes, she will write Meghan up as Celiac, no questions. We're familiar with 504 plans as Caitlin (#2) has one.

Testing caitlin for Celiac... Well - We may have at one point, years and years ago.... She has multiple food allergies, she was just dx'ed a couple yrs ago with T1.... does she have the gene? Probably. Would I dare put her back on a gluten-free diet? Something to think about.. If you knew our history, and you will learn it for sure, thats not a road I want to go back on.

Call it burying my head, but honestly, the girl has been put thru the ringer. She has no pain, skin looks good, etc etc.... Im not rocking the boat, kwim? :/

Could Meghan be LI? I will bury my head on that as well.. If things seem ok, Im not going to take away something on a 'gamble', kwim? Ive done the gluten-free/CF diet (Caitlin).... She doesnt know anything else. Meghan does. She KNOWS what dairy cheese pizza IS... Would be a REAL REAL tough change. I'm not ready for that.

If the GI says to, well, its a discussion to have... :(

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You need to get your other kids tested, especially DD#2!!! Type 1 diabetes is a risk factor for celiac and it can be silent.

I wouldn't put her through the biopsy if she were my child, as long as her doctor is willing to firmly diagnose celiac for her school. Some teachers are unbelievably uncaring about celiac kids. Other board members have had a lot of trouble getting accommodations in college dorms and cafeterias without a formal diagnosis. If that happens, you need to have good enough documentation to invoke ADA section 504. It's worth putting her back on gluten and getting the scope if you encounter any resistance from her doctors about writing a letter that will satisfy the school and eventually her college for ADA.

There are two issues with dairy, and you only have to try removing it if Meghan isn't doing as well as you and she would like. First, celiacs tend to be lactose intolerant until they heal. Second, gluten and casein are sister proteins and about 50% of celiacs have some degree of sensitivity to casein. The only way to pick up casein sensitivity in celiacs is elimination and challenge. It will not show up on RAST as the reaction is IgA mediated so you don't have to RAST her.

... and as far as IgA.... I thought i was done with this.. :/ Caitlins IgE girl. RASTs high for most of the top 8 and then some. (shes a rice gal!)

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Ooh! Interesting indeed... As far as the ped goes, she will write Meghan up as Celiac, no questions. We're familiar with 504 plans as Caitlin (#2) has one.

Testing caitlin for Celiac... Well - We may have at one point, years and years ago.... She has multiple food allergies, she was just dx'ed a couple yrs ago with T1.... does she have the gene? Probably. Would I dare put her back on a gluten-free diet? Something to think about.. If you knew our history, and you will learn it for sure, thats not a road I want to go back on.

Call it burying my head, but honestly, the girl has been put thru the ringer. She has no pain, skin looks good, etc etc.... Im not rocking the boat, kwim? :/

Could Meghan be LI? I will bury my head on that as well.. If things seem ok, Im not going to take away something on a 'gamble', kwim? Ive done the gluten-free/CF diet (Caitlin).... She doesnt know anything else. Meghan does. She KNOWS what dairy cheese pizza IS... Would be a REAL REAL tough change. I'm not ready for that.

If the GI says to, well, its a discussion to have... :(

That's great that your ped will write Meghan up for a 504 without the biopsy. I'd be more inclined to follow parental instincts and see how she does on the diet if that's the case. You and your Dr. can always make the decision to biopsy later if things aren't improving. Same with lactose intolerance/casein intolerance. It's something to keep in the back of your mind if Meghan's stomach isn't doing as well as you and she might hope gluten-free. Remember she can use lactaid with her gluten-free pizza if she seems to have LI. :) Also, once the villi heal from autoimmune damage lactose tolerance often returns. Lactase is made at the tips of healthy villi.

Casein intolerance can also come and go, so that you're aware. I started out cows milk casein-intolerant when I figured out I was celiac. After a year off cow dairy, eating only goat milk, I tolerated it for the next five years. Now I'm needing a break from dairy again because it gives me GI trouble.

As for Caitlin, if it's a trauma to even consider testing and she has no celiac symptoms at all (iron OK? tooth enamel OK? not breaking bones easily?) I guess you watch and wait. Just keep in mind that she is at very high risk for celiac with T1 diabetes and a first-degree celiac relative. If you've had her off wheat for allergies she may not have been eating enough to develop celiac. Maybe low-gluten to minimize her risk? If you cook mostly naturally gluten-free foods, which is by far the best for Meghan, she won't get that much wheat anyway.

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That's great that your ped will write Meghan up for a 504 without the biopsy. I'd be more inclined to follow parental instincts and see how she does on the diet if that's the case. You and your Dr. can always make the decision to biopsy later if things aren't improving. Same with lactose intolerance/casein intolerance. It's something to keep in the back of your mind if Meghan's stomach isn't doing as well as you and she might hope gluten-free. Remember she can use lactaid with her gluten-free pizza if she seems to have LI. :) Also, once the villi heal from autoimmune damage lactose tolerance often returns. Lactase is made at the tips of healthy villi.

Casein intolerance can also come and go, so that you're aware. I started out cows milk casein-intolerant when I figured out I was celiac. After a year off cow dairy, eating only goat milk, I tolerated it for the next five years. Now I'm needing a break from dairy again because it gives me GI trouble.

As for Caitlin, if it's a trauma to even consider testing and she has no celiac symptoms at all (iron OK? tooth enamel OK? not breaking bones easily?) I guess you watch and wait. Just keep in mind that she is at very high risk for celiac with T1 diabetes and a first-degree celiac relative. If you've had her off wheat for allergies she may not have been eating enough to develop celiac. Maybe low-gluten to minimize her risk? If you cook mostly naturally gluten-free foods, which is by far the best for Meghan, she won't get that much wheat anyway.

Caitlin was gluten-free for years.... We've dabbled into it - wheat free cookies (but containing barley), and then to a specific wheat based bread... and some wheat based crackers (Ritz).

She does NOT like the taste of wheat pasta, and osme other wheat things, but there are no anaphylactic issues with her and wheat, and shes generally clear of gook, and sorts while consuming wheat... Its tough for us to say 'passed a wheat challenge' - since her diet is rather limited, and we're used to it... Are we ready to take her to McDs and try a roll? No. Not a chance in hell :) (She also does not like beef - and RAST high for it).

Wouldnt be a trauma, really - but its another procedure, and emotionally, <WE> are not up for it.... her blood sugar when dxed with T1D was in the 700's (where a coma starts to set in) - My wife doesnt think abou tthat anymore, because she says she was <thisclose> to losing her....

We havent been put thru 'the ringer' - but we're truly 'right there' :)

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Thank you. Not new to avoiding gluten, as we were neocate only for #2 and know the food allergy version....

Why avoid dairy? Bad for guts? Dairy allergy? I'd ate to think we'd have to RAST Meghan. SHe showed no signs of anything til this..... truly, none.

Blah!

Hi Jason,

Nope, it's not an allergy reaction on the dairy. A RAST test will not detect it. RAST is looking at IgE immune reactions only. There are other kinds of immune cell reactions that it does not detect, IgA, IgG, TTG. The IgE immune reaction is the cause of allergy type symptoms, red eyes, hives, difficulty breathing, swelling face, sneezing, red skin etc. There aren't many tests for the other immune reactions besides the gluten antibodies. Avoiding dairy is good for starting on the gluten-free diet because many celiacs can't digest it at first. The lactose enzyme that digests dairy sugar is made by the villi lining the small intestines. When those villi are damaged they can't make that enzyme and you can't digest the lactase sugar. That condition is called lactose intolerance, and results in excessive gas, bloating, diahrea, possibly cramping. After a while on the gluten-free diet the villi may heal to the point they can produce the needed enzyme again (lactase) and then dairy can be eaten without problems. Unless there is also a problem with casein, one of the proteins in cow dairy, That casein protein intolerance may or may not go away over time.

Allergy and Intolerance by Lydia S. Boeken M.D.

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It is very simple. Celiac is genetic. All of you could, and probably do, have it. Once you get one auto-immmune disease, the rest follow. Ignoring the likelihood and avoiding testing is dumb. You have to understand, by the time symptoms are full blown, serious damage is done. In this case an ounce of prevention is worth ten pounds of cure.

Anyone with a family history of auto-immune issues should be on a Gluten-free Casein-free diet really. You can continue to live in blissful ignorance if you want, but I guarantee you it will come back to haunt you down the road.

As for thinking it is too difficult to take away food from a kid...how difficult is it to give them insulin shots? Or have them develop thyroid disease? Explain to your daughter when she struggles with infertility as an adult how that is so much easier than it would be to give up pizza.

I know I sound harsh, but you have your head in the sand here. Ignoring it won't make it go away.

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