5 replies to this topic

[SilverSlipper]

My six year old had her biopsy today. It has been a rough two weeks. We had taken her off of all diets and meds (although they later re-added the meds for stomach cramps). She has spent the last two weeks sick, alternating between vomiting and diarrhea with stomach cramps so bad, she crawled along the floor rather than walking at times. The nausea and exhaustion was so bad that a couple of times she fell asleep in the bathroom with her face on the toilet seat. Over the past ten days, she was late to school four times (we simply couldn't wake her up), left early three times and missed three days. She lost three pounds in those ten days (partly because she started sleeping 12+ hours a day).

Overall, our GI said the biopsy looked good. He saw no tumors, ulcers, weirdness, etc. He said the small intestine did look a bit off, but that was the only area. He said the results from the biopsies and other tests would come back probably after Thanksgiving.

He sat down and talked with me for a bit (which I really like, he's a talker and takes the time to really listen). He asked me what my 'gut' was telling me. I told him that something was wrong with her and that regardless of the biopsies I planned to move her back to what worked (gluten free, most dairy - free and no fruit juice). He said that if the biopsies came back clear, that he wanted to look at a few other things, but he supported me in whatever diet I chose. He said even if the Celiac test came back negative, that he was a firm believer that some people are simply gluten sensitive and should avoid it. He said he would write whatever notes I needed for the schools to let them know she had medical issues and needed a special diet. (I really like that about him as well).

I'm really glad to have these two weeks over and her biopsy finished. (I hate the effect anesthesia has on the girls). It feels great to remove gluten/dairy things away from her now and start feeding her food that makes her feel better. I'm done with all the other tests for my other daughter as well (teeth removal and bone density tests). I'm so glad to be finished with doctors for a while so I can concentrate on the upcoming holidays.

[AVR1962]

That had to be heart-wrenching to witness. Two of my three children are on gluten-free diets. It was an issue and they didn't go thru the testing and do not care to go back on gluten to have the tests done. They know they can't eat gluten no matter the test results. Sorry your daughter had to go thru all that. I do wish her the best on her gluten-free diet and hope she bounces back quickly!

[Di2011]

Hi Silverslipper,

Your girls are lucky to have you! It is tough to see your own children live through that and a double whamy knowing it was you that made the decision to make it happen. You have a good positive outlook and your kids will love you for it.

Can you let us know who the great GI is? There might be others in your area that can benefit from his good wisdom.

[mushroom]

You are very lucky to have found a wise doctor. I wish your whole family good health.

[kate12345]

I just got through watching my own suffer and the anesthesia was awful. They had her in those splints so she could not move her arms as she had that ph monitor in her nose. The whole thing is just terrible, especially taking the meds away. It is amazing the kids get this sick over this. If the gluten free diet works for them, it would just be wonderful for these kids to be normal again. I was amazed due to the pain mine had that the biopsy did not show a completely torn up stomach, etc. I am sure you are too. Tomorrow, hopefully she will be better and the meds can be started again already. Do you think these doctors understand the pain and suffering that goes with this? It sounds like you have a good one.
It is torture waiting on the results as well. I hope by some chance you will get answers before Thanksgiving. Jennifer

[SilverSlipper]

Our doctor is Dr. Cavender in Alabama. He has a niece with Celiac Disease so he tends to "get it". Plus, he's good at knowing what stores carry what products and even how to adjust some recipes to make them gluten free.

Our middle daughter with celiac disease was so textbook perfect that it makes getting a diagnosis of some sort for my youngest, difficult. Our middle daughter had classic symptoms, positive blood, positive biopsy, positive response to diet and a follow up biopsy was perfect. After taking out gluten, she thrived in every way. When she has gluten, she collapses for about a week or two, depending on the severity.

Our youngest has just had difficulty figuring out what's wrong. I don't know if she has celiac disease, but she has something going on. I've had some doctors (and relatives) suggest that she was faking stomach aches, and one even suggest that she was making herself throw up for attention. (Nobody has figured out how she could be faking the diarrhea). She is 6 yrs old and all of this started last December. Regardless, we're going to do what makes her feel better although they typically gasp when I tell them the restrictions. But, it's not THAT difficult. And if it will keep her feeling better then I really don't care what they think. (Okay, rant over. lol).

I'm just really happy to have the biopsy finished.