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Member Since 23 May 2012
Offline Last Active Mar 08 2013 08:24 PM

Posts I've Made

In Topic: Instant Behavior Change In Son After Going Gluten Free.

08 March 2013 - 08:24 PM

The answer is yes....it can! I didn't believe it 9 months ago, but it's the truth. It totally happened to us. Our daughter was different immediately. I am thinking out kiddo had the neurological form. Which is why for us it was so immediate. I know it seems impossible but really it, it's totally possible that it can be such a change. I would say expect good days and bad days. But your new normal will be awesome!

In Topic: My 12 Yr Old Son Has Glutant Intolerant Symptoms But Diagnosed Psychological.

09 February 2013 - 12:54 AM

Good Lord, what is wrong with these people?! Out of curosity how old is your son? I am guessing what the doctor is hinting at is a conversion disorder. So I would be very clear about what exactly the complaints are....right them down, for example, on Feb 2 at 9am: stated "left knee hurt, pain was a 8 on a scale of one to ten, was wincing, holding the knee and unwilling to move, regardless of the excitement to play with his friends that were over". You need to include WHERE it hurts, HOW MUCH it hurts, and the psychosocial pieces surrounding it. I am sure they are thinking this is a get out of school free card. If you can track this stuff and show it happens at home and else where when it is really something he wants to do that will help. Maybe what you need to do is persue the celiac diagnosis pathway and then just to get the school to calm down do a psych eval with an independent group. If they deem him not needing help them he will be in the clear with the school.

As for the insurance piece. The doctor knows NOTHING about how they will reimburse. There are 1000s of types of insurance, he/she is hardly an expert on it. Do NOT listen to them. They are trying to discourage you from doing this. My daughter is a celiac, we went to a GI and he was so rude to me. He bascially said my child didn't have the disease (even with high labs and a family history) and I pushed to hard to get an appt because their are children who are sicker and he was pissed that they put me on the calendar. Well you still accepted the appt so I deserve to be treated that way? You are the parent, NO ONE, I mean NO ONE knows your child better than you. It doesn't matter what these professionals have read in books or have experienced with other patient's you are the expert on your child's care. Keep persuing it, you are on the right track I bet.

If you have done the labs, trial a gluten-free diet this weekend. Why wait? Would you not do the diet if the labs are normal? Just give it a try. It's a diet, it can all be undone.

Good Luck, keep updating us.

In Topic: Four Year Old Positive Blood Test - Awaiting Biopsy

16 December 2012 - 08:16 PM

From a mother who has been in your shoes (recently too, May is when our daughter was diagnosed). My daughter had high TTGA and IGG, but not high enough for the jerk of an GI doctor we saw. He wanted me to wait a couple years to see if damage appeared in the intestines. I beat myself up over going gluten free for months. My daughter did have distention and bloating but the biggest change I have since going gluten-free was in her behavior. My daughter's body was the opposite of your child. she was totally and completely activated, ALL THE TIME! She was bouncing off the walls to which most of our friends wouldn't be around her, my husband and I refused to ask others to watch her because we felt so bad that her behavior was insane! SO MUCH ENERGY! We did biopsy her and it was negative. Looking back I wish I would not have done the biopsy. They are invasive, expensive and unnecessary. As someone said to me....."it's a diet, try it, if it doesn't work you can always go back". I completely understand wanting to know for sure if your child has celiac. However, looking back I would not do the biopsy again. It's completely unnecessary. What you are talking about is a diet, that's it (albeit an involved diet) but it's just a diet. You can do it and undo it if you are not happy with the results.

After we changed our diet, her behavior made a 3 fold improvement, she can focus, she can sit still for more than 10 minutes, etc.

The symptoms you describe with lethargy and all, that is my husband. He thinks he is not a celiac however since our family went gluten-free in May, he has tested several times eating wheat and he comes home from work and sleeps for 4 hours. He can't move, he is totally and completely exhausted. He did not have high labs, his were normal and he opted not to do the scope and he is still completely intolerant if not full blown celiac.

So I guess what I am getting at is, you can do all of these tests and still have no more answers than before you started the tests. The only way to know is to do the diet. Try it, keep a journal and see how it goes.

That's my opinion!

In Topic: How Do You Tell If It's A Virus Or Gluten?

28 August 2012 - 06:23 PM

The pharmacy friend of the previous poster is correct. Sugar draws fluid into the bowels and breaks up constipation. Excess sugar can certainly cause diaherria and vomting. I wouldn't think it was a 'glutening' but more of a sugar issue. However to be safe I would contact the bakery to find out the ingredients. Best to cover all the bases.

In Topic: My Son's Story

20 June 2012 - 08:04 PM

Wow, what woes you have had....I am so sorry! A food journal is a fantastic idea!

We started one and since a lot of our family indicators are behavior I am writing about all this too. Write what you can when you can. It has helped us a lot!

It will take time to undo everything and heal the damage!

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