My Son's Story

[CeliacMom2012]

When my son was 1 1/2 he had to have surgery for 3 abdominal hernias. Up until then we were doing great, no signs of anything being wrong. After 4 years of being told nothing was wrong, that he was just constipated. I made a phone call to a family member who has Celiac and is also the CEO of GIG. I was told exactly what test to have done. After talking with her I automatically started the gluten-free diet. After the blood work came back positive we where referred to Children's Hospital in Birmingham, AL to Dr Dimmit. Our first appointment he wanted to do all the same stuff that all the other Drs had us doing. I told him that I was not starting everything all over again because we had went thru 4 years of being treated for constipation I was not putting him thru all this stuff that didn't work in the first place. So 3 days later we were in the hospital for the biopsy and a medical 'clean-out' (which was so much better then all the 'crap' they were having us do at home).

After being to just how severe his Celiac was I did all my research and I am still doing. So after not being able to poop for several years we are still having troubles after being on the diet since Feb 2012. I strictly monitor his food intake, however, when he is visiting his father, I don't believe that they are following the diet the way they should. So I am starting a journal of everything that he eats and does, in hopes of being able to see a pattern of hurting and such.

Since being diagnosed I have been informed that my son may have to have part of his insistent removed as they are not healing like they need to. Has anyone ever had this done?

[kareng]

I assume you mean they want to remove his intestine? Because it isn't healing? This isn't enough reason for his father to feed him gluten free?

I would get a lawyer and maybe the doctors can help you with some sort of emergency court order to keep his father from poisioning him? Removing part of an intestine is serious.

[deb445]

. I strictly monitor his food intake, however, when he is visiting his father, I don't believe that they are following the diet the way they should. So I am starting a journal of everything that he eats and does, in hopes of being able to see a pattern of hurting and such.

Since being diagnosed I have been informed that my son may have to have part of his insistent removed as they are not healing like they need to. Has anyone ever had this done?

I'm not familiar with someone so young having part of their intestine removed - my grandmother ( she'll be 90 in two weeks! ) had this done a few months back. She is trying to embrace the gluten free diet, but has difficulty.

With regards to the food journal - great idea. I suppose it is for your son's father to write in also? I would think that if he knows it is medically recommended, as a means of determining whether or not the surgery could be avoided, he'd be onboard and supportive?

Failing that, how would it be received if you prepared meals for your son, and sent them with him, to consume while at his dad's? This could be presented as a medical recommendation also?

I did meal preparations for our previous daycare provider, and sent it with the kids. A lot of extra responsibility, but it gave me peace of mind. Just a thought.

Something else I thought of is dairy - what is your instinct on how his body is responding to dairy? Does he seem congested a lot?

[CeliacMom2012]

His father tells me that he follows the diet, but that is one of the reasons for the journal. So that I can find issues. As far as the removal of part o the intestine, they told me it is because of the severe pain and not healing at all. That he stayed so impacted for so long and with his colon not returning to a normal size, that it would be the best option for him. I was told they only do this in severe cases.

[CeliacMom2012]

I'm not familiar with someone so young having part of their intestine removed - my grandmother ( she'll be 90 in two weeks! ) had this done a few months back. She is trying to embrace the gluten free diet, but has difficulty.

With regards to the food journal - great idea. I suppose it is for your son's father to write in also? I would think that if he knows it is medically recommended, as a means of determining whether or not the surgery could be avoided, he'd be onboard and supportive?

Failing that, how would it be received if you prepared meals for your son, and sent them with him, to consume while at his dad's? This could be presented as a medical recommendation also?

I did meal preparations for our previous daycare provider, and sent it with the kids. A lot of extra responsibility, but it gave me peace of mind. Just a thought.

Something else I thought of is dairy - what is your instinct on how his body is responding to dairy? Does he seem congested a lot?

My son is 7 now.

[kvanrens1]

Hey CeliacMom,

My daughter has seen Dr. Dimmit in the past. Out of frustration, I went to another Ped GI closer to home (Huntsville, AL). Also very frustrating experience with the Huntsville Ped GI. Do you know if Dr. Dimmit is the "expert" in the Alabama? Would love to swap a few doctor stories with you. Can you message me? Hope your son is feeling better.

Kristy

[CeliacMom2012]

Hey CeliacMom,

My daughter has seen Dr. Dimmit in the past. Out of frustration, I went to another Ped GI closer to home (Huntsville, AL). Also very frustrating experience with the Huntsville Ped GI. Do you know if Dr. Dimmit is the "expert" in the Alabama? Would love to swap a few doctor stories with you. Can you message me? Hope your son is feeling better.

Kristy

I have had very good experience with Dr Dimmit. Everyone in the office was very understanding that I already knew a lot about Celiac because of his aunt being the CEO of GIG. It was surprising that when I told them I would not put my son through the home clean outs again, they went to the next step after me reviewing with me his past. The hospital staff was amazing also. If I needed anything they got it for me so that I wouldn't have to leave my son's room. Even having to clean up is poo messes they were amazing. I drive 3.5 to 4 hours for his appointments. Me and my husband have even talked about moving closer to the office.

[Birdie19]

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!