Help for my daughter

[Kacysmom]

I found this board after another frustrating and confusing call from my daughters gi doc.My daughter is 11 and has had stomach issues for as long as I can remember.The doctors have always said she was lactose intolerant and it made sense.She has always gotten stomach aches and diarrhea after any type of dairy.Over the last couple of years it has gotten worse and we noticed that it was no longer just dairy that upset her stomach.I mentioned celiac to the drs a couple of times and it was dismissed.Now,in the last 6-8 months she could clearly not tolerate gluten and this past summer she started having joint pain.This is huge for me because her older sister has juvenile rheumatoid arthritis.So we brought her in and she was referred to ped gi.So far all of her tests have been negative.Celiac testing was negative,lactose breath test was negative and all blood tests have been negative.We put her on gluten/dairy free for one month and she felt like a different person.She had an upper endoscopy that showed some irritation(in stomach) and small nodules in esophagus,all biopsies came back negative.They have said she clearly has gluten intolerance but it is a severe case fore someone with negative test results.At her last visit her dr ordered stool tests and they all tested positive for blood.At the same time we were waiting on results from the IBD panel and I got the call today that it came back negative and they want to repeat the stool tests in about a month.She said it could have been from the areas of inflammation in her stomach.(they gave her a prescription for nexium)And we got a referral for a pediatric rheumatologist but she cant get in until the end of March.She still has joint pain and what look like small nodules on a couple of joints.So needless to say I am confused.I realize that the next step would be a colonoscopy.I am just wondering if anyone else has had a similar situation with neg results.Any input or advice would be appreciated.Thank You

 

[chrisnsteph1022]

My IBD panel was negative, too. And it was done at the height of a confirmed (via scope and biopsies) flare. So that test is not always right. I hope you're able to get some answers soon.

 

[tamesis]

Unfortunately, Crohns can be a hard disease to find. I've had problems since I was in HS (I'm 29), and really bad the past two years, and have had all my bloodwork come back normal and two "normal" scopes in the past two years.
I hope they find what is troubling your daughter soon. Any chance you could plead with the Rheumy, if it's the same one that treats your other daughter, to get a sooner appt.?

 

[Kacysmom]

My other daughters rheumatologist actually left.There is currently only one available and he is actually at a different childrens hospital than where we go now.So it is all very frustrating.But thank you for your reply.I hope you find answers as well.

 

[mickey]

I was told by an Eastern/Western doc that food is one of the most dangerous drugs we have. It can affect you in different ways. I had a unique allergy test done that showed how corn and corn gluten were high on my chart of allergies..to the point that the corn would cause joint swelling. I could not figure out why my knees were swelling,sometimes one more than the other, hard to walk, etc., and then realized it was worse after coming home from the movies. Okay, so I was sitting too long? No, popcorn! As soon as I eliminated corn from my diet, no knee or other joint swelling! You would be amazed at everything that has corn in it. I even saw a package of frozen peas (only peas) that still had corn gluten in it! Envelope glue, etc...the list is endless. Regardless, I find my belly will swell, my knees, knuckles, etc. whenever I would have corn soup, popcorn, etc. The allergy test confirmed it. Look up Dr. Martha Howard of Wellness of Chicago (website) and perhaps contact them to see if there is a doc in your area that performs the same allergy test. It was developed by NASA and is used throughout Europe, but not here so much. Test runs metal bar up and down hand meridian points and computer pops up list of what organs in body are inflammed, what foods are an allergen and to what degree (scale of 50-100),etc...fascinating. anyway, helped me control my diet and almost instantly reduced inflammation in my stomach and joints.

eliminate any and all sugar for at least a month as well. You will see that sugar is a source for illness and inflammation. Stay off the dairy, gluten, grains, etc. She can take supplements for anything she needs. Extra Vitamin D will help keep her immune system in check.

Adding a small piece of ginger to a pot of hot water and sipping it will help ease her belly almost immediately. Great for upset stomachs. In winter, have her drink only warm/hot drinks as cold can cause contractions.

Hope this helps! good luck!

 

[StarGirrrrl]

Hi Kacysmom, so sorry to hear about yout troubles

We are not really geared up on this section for kids so I will move this to the area for both diagnosed and undiagnosed kids where you should be able to receive better advice and support.

 

[DustyKat]

Hi Kacysmom and :welcome:

I'm sorry to hear about your daughter. :hug:

When my daughter was diagnosed 5 1/2 years Crohns wasn't even on the radar so she didn't have some of the standard tests used to diagnose it. However of the tests she did have, and some of them repeatedly, like bloods, all returned negative. Nothing ever reflected what was going on inside.

My son is a different story, his bloods show everything even when symptomatically he is very mild. Ironically, visually his colonoscopy was indicative of Crohn's but pathology has never supported this because he doesn't have granulomas. Is it any wonder that people tear their hair out trying to get a diagnosis! :eek2:

Good luck hun, I hope the colonoscopy is able to give you the solid answers you seek and your daughter the answers to get some lasting relief.

Dusty. xxx