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MacieMay

Member Since 21 Jul 2010
Offline Last Active Nov 18 2011 11:08 AM
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#748023 What Are You Cooking For Thanksgiving?

Posted by MacieMay on 16 November 2011 - 07:30 AM

Any of the above willing to share some yummy gluten-free Thanksgiving recipes? I love to try a coffee cake and a spinach casserole. I'm looking for a cornbread recipe too. I want to have a gluten free thanksgiving/birthday dinner this weekend at home with my husband and 3 daughters (daughter age 2 is gluten intolerant). Trying to get the whole family to realize that a gluten free diet is yummy and a healthier way to eat. Thanks!
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#680329 Doc Says Not Celiac, But I Still Think It Might Be

Posted by MacieMay on 04 March 2011 - 12:09 PM

Sorry you have to deal with not only having a sick child but a husband that is NOT supportive. I dealt with that all summer long. My husband fought me on EVERYTHING and Dr's thought I was crazy. I knew something was wrong, I just couldn't prove it or the get the attention of the right people.

To make a really really long story short. My daugther has been diagnosed with a gluten intolerance. All her testing came back negative for Celiac. She had two celiac panels, biopsy endo and colon (colon to check for hidden food allergies) and gene testing. According to gene testing she is very very very unlikely to be celiac or ever be celiac. She just turned 2. From day one of starting solids, I knew something was not right. I have two older healthy girls 8 and 6, so I am NOT a new Mom. According to what i've read on here, testing in small children is not reliable. It makes sense if you think about it. It can take a long time for someone to develop the damage to the small intestines that shows in the biopsy. Usually when someone is finally diagnosed with Celiac they are really really sick. I think what your seeing and what I was seeing is the early stages. If you can get the dr. to diagnose her with the gluten-intolerance, go with it, it is better then NO diagnosis. It took me a long time to convince my husband that something was wrong. He took no interest in doing any reading or research on Celiac/the Gluten Intolerance (go figure..he's a Registered Nurse). I made a point to point out ANY and ALL symptoms (BM,rashes, waking up in the middle of the night, distended belly etc. etc.). He is eating his words now. We have been gluten-free since Sept 1st. She is so much better!! All those symptoms... gone! And you better believe I throw it in his face every once in a while. He put me through hell. We are OK (still married) but I did have to make to clear to him that after this I will ask his opinion but not to be surprised if I don't follow it, I just can't trust his judgement anymore.


I hope this helps. Good luck! If you ever wanted to ask me any questions, just email me.
Take care
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#636281 More Gi Issues Today, Including Blood

Posted by MacieMay on 01 September 2010 - 10:08 AM

Ok, so my sons appt. with a ped. GI isn't until the 4th of Oct and is better than the end of Oct as first planned but still, that is 4 weeks away! He got gluten somehow yesterday or maybe the day before and today's poop was green and yellow with blood mixed in and floated. Gaah! I just want this all fixed! I also have tried to contact the nutritionist at this center he's going to and am wanting to know how we should prepare him for it and she hasn't gotten back to me. We called our Ped. 3 days ago and he still hasn't called back either, why can't things just be easier!

Sorry, I needed to vent. I'm so tired of seeing issues with my little boy, knowing he's being further damaged. I just want to be done already.




I feel your frustration!! I have an 18 mos old that has been in and out of Dr's offices all summer. We live hours away from Pedi specialists, it has been exhausting and we still don't have answers.

Are you suspecting that your son has Celiac? Im sure you know that they'll want him to be on the Gluten. Have you tried to get on the cancellation list at the GI. That has worked for me. Doctors offices do not call back when they say they are going to, you have to keep calling. We just waited a week for an office to call us back regarding some blood work. Your best bet, if you have questions is to ask to talk to your Dr's nurse. They usually are willing to answer questions and they will ask the Dr if they don't know the answer. I try to get on a first name basis with them, so they recogize my name when I call. I wish you luck and I hope you get the answers you are looking for.
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#628457 17 Mos Old With Rash

Posted by MacieMay on 02 August 2010 - 11:06 AM

Thank for the insight and sharing your experience. I had a feeling that these rashes present differently. We've seen 4 doctors and my husband is an RN and they just shrug their shoulders. We just got our appointment for her scope. I think we will have answers and dx after that. UGH... I hate the thought of giving her Gluten for two more weeks. : (
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#628378 17 Mos Old With Rash

Posted by MacieMay on 02 August 2010 - 07:56 AM

Thank you so much for your feedback! : )

I'm hoping to get some additonal feedback from some Moms who have seen this Gluten Rash I've been reading about. Maybe I should post on another forum?
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#628128 17 Mos Old With Rash

Posted by MacieMay on 31 July 2010 - 07:24 PM

Hello there! I am new here! A dx friend has introduced me.

I was wondering if anyone with dx kids had a rash as an early symptom? My daughter has had a rash going on 5 months. It fits the description of DH with it's purple coloring and location (both knees, both elbows, face, hands and feet) but Derm says NO. We have been to the allergist and she skin tested negative for all the big food allergens, along with dog, dust and mold. This rash does not look like hives, and she does not have any other allergy symptoms. Her face is blotchy and red but her elbows, knees, feet and hands are raised and bumpy, not dry like eczema. Eventhough, she came back negative for the food allergies, I thought maybe food sensitivity so we started eliminating foods, first eggs, milk, all milk products, soy, all soy products and during that time the rash got worse. The only thing left and last on my list was wheat. Once I realized it could be Gluten, I begged her doctor to do a celiac panel and we went Gluten Free that day, and it's been almost 2 weeks. Her Celiac panel came back negative, which i've read is common in a 17 mos old because they haven't built up enough antibodies. I think her skin looks better, it's not great but I think it is starting to heal and it does not appear to be getting worse. Has anyone experienced anything like this? I'd appreciate any help!! Thanks!!
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