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Member Since 17 Feb 2010
Online Last Active Today, 10:49 AM

#923091 Results All In - Still Confused...

Posted by on 07 July 2014 - 08:41 PM

Is he nursing (grin poop- formilk hind milk issues) ? Just hitting major milestones (extra calories for extra activity)?


Honestly Celiac isn't the first thing that would pop in my head with that. Now with the IgA deficiency that does throw a monkey wrench into things.  Being positive for the gene isn't really that telling for anything other than that Celiac is a POSSIBILITY.


Give what you told and the desire to redo the scope, I (as a Mom) would not change his diet.  If they are going to re do the scope AND redo it PROPERLY ( 4 samples are not sufficient) I would much rather it be done correctly while on a gluten containing diet.  


If all the other tests are good and there are no vitamin deficiencies or anything going on I would really not change anything till there was a proper scope.  Take that from someone who is basically living this now after 4 years on the gluten-free diet and there still being issues BUT also follow your gut Mama!! 

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#923083 Boston- Four Thumbs Up!

Posted by on 07 July 2014 - 06:22 PM

My son and I went to Boston a few weeks ago to see Dr. Fasano.  Aside from Celiac disease he also has life threatening allergies to peanuts, tree nuts, dairy and egg.   This was the first time flying for us and the first time being out of town without access to a kitchen for more than a day. 


We had an AWESOME time!!   I had some help (Thanks again Gemini!!!  My Boston personal trip planner ;)


We stayed at the Wyndham near Mass General.  There is a GIANT Whole Food right behind that you can get to through the back door of the hotel!!!  Awesome!


I shipped a Pantry box from the A place that is always bleeped out on here for spamming ;)


Eating out:  I will say that my kid doesn't eat out often. Our expectations are pretty simple, get my kid food he'll eat that is SAFE and we're both happy!  Simple whole foods with minimal processing is a-ok to us!


Ruth's Chris Steak House on School Street- Went for lunch. He had a roasted 1/2 chicken and steamed broccoli. He LOVED the crispy skin!!  (like i said, simple is great and no reaction is even BETTER!)


Legal Seafood- Long Wharf-  AMAZING!  I emailed them several weeks prior.  On a Friday night the manager called me and assured me they could 100% accommodate him, he entered the reservation himself and told me that he would make sure he was on duty when we came!  Can you say AWESOME!  I looked at the gluten-free menu and saw fries- I held my breath as I asked my allergy Mom questions.


DS had grilled shrimp, FRIES, corn on the cob and grapes.  He was in absolute HEAVEN!  He wolfed it down in no time at all!  I asked if he wanted anything else, more shrimp!  Now on the second order they brought it with some kind of sauce.  I sent it back and the manager assured be it was gluten free.  I said what about all the other allergens, they again assured me it was fine...... I wasn't willing to test it so I asked if I could kindly just have grilled shrimp again and they got it for us and again, DS had it eaten in a minute! He asked to go back the next day ;)


The Dean's List at the Wydham in Blossom St.- This was where we stayed.  When we were returning from a long day on the way to eat crackers and cereal in the room the chef was talking with someone so I figured what the heck, I'll ask.  He assured me he could make DS some chicken and broccoli (see a theme here?? lol  It's what he eats at home at least once a week so he was excited to be eating it out! lol).  We went upstairs and washed up and then came down for dinner.  He again ate everything and loved it!!! 



So being a first letting others cook for him several days in a row, they all hit it out of the ballpark!  He loved every minute of it and while I worried after each meal as I always do, we didn't have any issues!!!  We had an awesome trip and he's still talking about it!!







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#920984 Food Sensitivity?

Posted by on 20 June 2014 - 11:56 AM

I know many people who do this and IF you have the money and it's not going to break your bank, go for it!  I just see people who are struggling and sick and think this is going to magically cure everything but that's most likely not the case.  I see 99% of these tests say to go off G, D, E and a few others and add them back. Well that is an elimination diet which could be done very easily with a legal pad and a pen and find out the same things.  


Even allergy testing for life threatening allergies is a 50/50 shot.  Intolerance testing, if it was scientifically valid, would have even worse results I fear. These tests seem to lighten the pockets of those doing them and line the ones who suggest them. It makes me nervous for people.  A lot of times these are people with things like Celiac but because a holistic practitioner told them to go off gluten they need to challenge to get an actual dx which is REALLY hard on a person.  These are reasons I would suggest a strict elimination diet over any intolerance testing PERSONALLY.  


I'm glad you are feeling better with what you found out and hope your trial go well when you reintroduce things.

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#918040 Career And Celiac

Posted by on 27 May 2014 - 06:23 PM

1) It says MAY. Have you called to inquire? Or have a third party call if you don't want to "out" yourself.


2) Many times you will find that if you adhere to treatment, these issues are non issues because your Dr. will sign off on them. 


I wouldn't give up just yet.

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#915686 Non-Gold Standard Dx Or No Dx--Which Is Better?

Posted by on 10 May 2014 - 06:24 PM

Here's the thing:  1) you know you feel better now 2) you have no way of reliably getting tested (even if you DID test + for the genetics does not 100% mean you have Celiac) 3) you aren't a kid where you need a dx for accommodations.  


You have been given the same advice on several threads over several weeks and I've not seen anyone saying anything any different about what you can do at this point. I know you want to know for your kids and I totally understand that.  Are they insured?  If affording it is an issue and depending on where you are, they should be able to get insurance through the state you live in and then you can get them tested if they need it.


As for you needing a dx to take when you are away for a weekend....I don't get it?  If you can't eat something, you say no. Bring your own food as you do now.  Getting a letter from your Dr. isn't something I've heard of any adults do unless it was for work (like the military.  

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#910980 Pediatric Tsh Values

Posted by on 31 March 2014 - 06:46 PM

With Gemini's AMAZING help, we were able to figure things out.


DS has

-multiple life threatening food allergies


-Celiac with levels that would not come down


The not falling levels was driving me crazy and Gemini talked me through things and we went the endo route. After several bad visits I went with the calling about levels and now DS has been on meds for a while and he's doing well.  We are back to struggling with ttg's but....


All that to say, DS didn't have typical symptoms of Celiac OR thyroid issue. It was pure Mom/Celiac board power that got us through.  Hugs. It shouldn't be this hard :(

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#893405 Milk Allergy Now?

Posted by on 25 October 2013 - 07:24 AM

If the only thing she has is a red rash around her mouth, I would not leap to an allergy.  Are her diapers okay?  Any swelling?  Vomiting? Those would be signs of a true allergy (IgE mediated).  It may be an intolerance though those signs are usually GI in nature.  I would be VERY reluctant to do allergy testing at all.  They are notoriously INACCURATE and can lead to removing foods unnecessarily.

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#889029 Emergency Id Tag

Posted by on 19 September 2013 - 12:26 PM

I would not have one for Celiac. My child with Celiac does have one but he has multiple life threatening allergies. 

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#888286 Wheat Bran - Try It - It's Great!

Posted by on 13 September 2013 - 07:16 AM

I am so very sorry, I thought it was candy that posted the link........  


So sorry Stephanie :) I apologize :)

It's all good :)

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#888048 Wheat Bran - Try It - It's Great!

Posted by on 11 September 2013 - 04:39 AM

It is NOT SAFE for those with Celiac or intolerances or allergies. That's great that it doesn't give you any ill effects but it isn't safe for most in this community.



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#887291 The Kindness Of Others...

Posted by on 05 September 2013 - 06:44 AM

If it's a private school that doesn't receive ANY public funding (ie religious schools mostly) then an IHP may be more what you would need over a 504. A 504 is a part of the ADA that covers Celiac disease.  An IHP or health plan is often substituted in a religious school. 


If the school is being really great about it I would talk to the about perhaps implementing an no food treat birthday rule.  Perhaps for you DD's class this year and perhaps school wide next year. This has SO many benefits for everyone really. Kids with Celiac, diabetes, food allergies not to mention the childhood obesity epidemic.  Our school does this and we can send in pencils or donate a book to the class library.  

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#873576 Discrimination

Posted by on 09 June 2013 - 06:04 PM

Not have a right to food at a baseball game? If that's the case then we shouldn't have the right to have water or bathrooms for that matter either. Why are they forced to have to provide that to everyone then?


They aren't saying you can't come to the game because you have Celiac. The food may be part of the "experience" but the experience isn't what your ticket price covers.


Just like at the movies. You can't bring stuff in. Period. The price of the ticket is for the movie.


We have a list much longer than just gluten. We eat before or after or call well in advance to find out if we can bring our own. If my kid has an issue with not eating AT the thing, we don't go. Obviously for travel that is a different story but again, planning, planning, planning.

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#861617 Dairy-Free Rice Mac & Cheese?

Posted by on 02 April 2013 - 06:49 PM

I make a great Mac and Cheese ! I use rice pasta spirals and then melt goat cheese with natures balance butter substitute and some sea salt. It tastes like the Annie's my son always loved! Goat cheese and milk is great, tastes almost exactly like cows milk but no allergy issues!

98+% of kids with a cow milk allergy are also allergic to goat milk/cheese. It isn't a good idea to try it without an allergists go ahead because of this high likelihood of cross reaction.

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#847989 Son With Conflicting Test Results, Unsure What To Do Next

Posted by on 11 January 2013 - 11:10 AM

So he's had 2 blood testes that are + and a family history.

He's got Celiac. I would never put my kid through an endoscopy when the facts are clear. If the GI is willing to officially dx. based on all this, take the dx and get the kid gluten-free. He'll learn in time what eating gluten does to him if he chooses not to follow the diet. Also, as Mom you do the grocery shopping I assume. You do have some control in his diet. Will it stop him from "cheating"? No, but it's a start.
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#846694 My 16 Month Old Daughter Got A Borderline Positive

Posted by on 04 January 2013 - 11:58 AM

If she's borderline positive AFTER 2 months gluten free, I would suspect her to be FULLY positive if you were't gluten-free at the time of the test. I would not get any more testing, you have enough. A positive is a positive especially if there was major improvement with changing her/your diet!

I would be sure your next Dr. is willing to write a formal dx based on the past blood work and the improvement when gluten was removed from her diet. This will make it possible to get a 504 plan or other accommodations when they may be needed in school in years to come!

Great job on finding it so early! Many kids suffer for years before they are dx. You rock Mom!!! Keep up the great work!
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