Off to GI doc

[Ginnysgirl]

Well, thought I would update everyone on our daughter (11). She has a new doc GI appt. in Cleveland on Dec. 22. I'm very nervous about this. She is having terrible stomach pain and isn't able to eat even a handful of goldfish crackers without the pain. She knows that she will have some uncomfortable testing done but still wants to go and see if this lady can fix her tummy troubles at least a bit. The pain is so much worse than it has ever been. Everything is labeled in numbers and her numbers are on the rise. Scares me. She looks like "casper" most every day now. Eating sends her into a scrunched up ball because of the pain. I am worried at what they will find but am very upbeat in front of her.

She is also still getting the bumps on her skin. The biopsy came back that "they couldn't determine a cause for them". It wasn't an allergy, a bug bite, a virus or a bacteria.....................well what the heck is it then!!! They are still occuring and leaving some scarring. Yuck!

Thanks for listening!!!

[Gena]

Hi there, I'm so sorry to hear your daughter is going through a rough time. Just curious if she is going to get tested for celiac disease (gluten intolerance)? Also, if she does have celiac, the rash may be herpatic dermatitis, which is an itchy rash that some people with celiac get. The test for celiac is just a simple blood test. If it comes back positive, then doctors often do an intestinal biopsy to confirm the result. There are a lot of us POTsies with celiac or gluten intolerance, so it doesn't hurt to test for that. Keep us posted on her condition.

[Guest tearose]

Good thing you have that appointment on the 22nd! Getting some answers is such a relief! I can't understand the bumps either but I can share what food helped me when I had trouble. Can your daughter manage warm soft foods? Butternut squash, cream of rice cereal, wheatena cereal, and applesauce were my staples until I got to the bottom of my GI problems. Maybe things like the goldfish are too cold, binding and processed for her to handle. I hope you can find supplemental drink-meal replacements if nothing else works. We need to her to make it to the 22nd with some strength!!! Thinking of you and her and wishing you better days very soon. tearose

[geneva]

Ginnysgirl,

So sorry to hear your little girl is going through so much pain with just trying to eat. This must be particularly hard for a child. Sounds like she is wise beyond her years willing to go through all the tests, including the "yukky" ones. When I read your post, I had the same thought as Gena about gluten intolerant (since gold fish have gluten). 10 months ago a nutritionist suggested I try going gluten free and I was so surprised how much better I felt.

I also wanted to mention that this weekend I tried tea made from 100% ginger root. Someone on this forum (Gena??) mentioned it a few weeks ago as being good for GI problems. I really enjoyed it and plan to drink it regularly now.

[Guest Julia59]

I hope you and your daughter are able to get answers soon. Tummy troubles can be so terribly complex. In the beginning of my POTS I had much the same type of problems your daughter has. I could barely eat----I would get colic type pain. This was for about three months, and then it started to pass and I was able to eat better. This seemed to be a faze as it has not returned other then the few times I get crampy. My gut problems are all motility issues, and a slow progression of gall bladder disease. In the beginning I thought about ciliac disease---or gluten intolerance, but my gut sensitivities don't seem to have any rhyme of reason.

In other words i'll often wonder if it's something I ate, but time and my own research has proved to me that it really doesn't matter what I eat. One thing I do know to stay away from is nuts, corn, popcorn and anything with seeds due to a diverticuli found in my small intestine. So those types of foods will give me a problem. The slow gut motility/combined with the diverticuli is not a fun combination.

Many on this board have many different food sensivities---especially glutin/wheat products. It wouldn't hurt to be tested for that. This could be something that may pass for your daughter as it did for me. I hope this will be the case for her. I went through a lot of tests, and all came out normal except the diverticuli and a slowly progression of gall bladder disease.

I hope she feels better soon.

Julie :0)

[Ginnysgirl]

Thanks so much for all of the encouragement. We have tried different foods but not stopped one particular type for any length of time. That might be something to try. Thanks for the advice. I also hadn't thought of the nutritional drinks but will try them. Might be easier for her. Everything triggers her tummy. Loud noises, the "bass" in music, heat, showers or baths all make her tummy cramp. But of course, most of all is food. We have tried the ginger root tea. She thinks it is too spicy and doesn't like the taste so that was a wash. But I make her decaf chai tea and she likes the flavor of that. Thanks again. I will update after the 22nd.