I hope you can give me some advise of where to turn and what to do. My son is 9 yrs old with type 1. Since diagnosis (Jan 2011) he has had excellent A1c ranging 5.9 - 6.4. He uses the Medtronic pump with Novalog. Over the past year he has had frequent stomach pains that cause him to loose his appetite. He has had a blood draw for celiac twice because of this pain. The most resent test was just last week with no indication of celiac. Additionally, he has been losing weight over the past few months. The Diabetes nurse practitioner says not to worry and has no other suggestions of what to do. However I am quite concerned and do not think it is OK for a 9 year old boy to have frequent, almost daily stomach pain and to be losing weight.
Have you ever heard of others with these issues? Do you have a suggestion of what other actions I can do to help my son?
What is his blood sugar when he has the pain. When I was little (in the 60s), my Mom figured out that my stomach ache meant I was low. Have you talked to your endo? Maybe you could find a way to borrow a cgm for a week or two and see what is going on. You might be able to find some correlations.
Sorry, that's the best I can do to help. Not much - sorry again.
I am a Type 1, diagnosed only 7 months ago. I recently visited my primary care physician for severe stomach pain accompanied with weight loss (i had already lost signifcant weight prior to my Type 1 diagnosis so my weight loss was only 3-4 extra pounds). She sent me straight to a GI doctor. After 5 minutes with the GI he stated that he thought it was gastroparesis. He ordered two tests; an upper endoscopy and a gastric emptying study. After I went through both tests the doctor informed me that it was in fact gastroparesis(http://www.mayoclinic.com/health/gastroparesis/DS00612). The quick explanation is that the high blood sugars damaged the functionality of the stomach, ti moves much slower than it is supposed to. It causes food to sit in your stomach for extended periods of time before digesting. It can cause fluctuations in BG, stomach pain, loss of appetite, nauseau and vomiting. It is treated through diet changes or medication. The diet is one that incorporates liquid meal replacements (soups, smoothies) and other easily digestable items. It also is helped by eating smaller meals 5-6 times a day. My doctor suggested lifestyle changes versus medication so off to the dietician I go to discuss incorporating a partial liquid diet into my management plan.
This might not be anything like what your son is experiencing but it is a thought...
Hi Yifat. If all else fails and you really suspect a gluten problem, you can just take him off gluten and dairy for two weeks or so and see if there is an improvement. It happens that one has negative tests for celiac, but is still very intolerant of gluten. (If one is intolerant, the villi in the gut is damaged, which causes dairy intolerance as well.)
When I developed celiac, I became intolerant of corn and soy at the same time--all of which became apparent at the same time I developed diabetes. Investigating food intolerances in your son seems like a good idea to me. I hope you find a solution soon.
I am just coming to grips with a similar problem (not the weight loss though) and have determined that I an gluten sensitive/intolerant. It is very similar, but totally different than celiac. I would highly recommend that you search the term and read up. I found it very enlightening. It prompts a similar but different reaction than celiac and is not found with a blood test. It is also only recently receiving medical recognition as a valid condition. Previously it was all in the patient's head or received a catch all diagnosis. I would research and see if it rings true.
My husband had stomach pains but not the weight loss for most of his life. It was only after he stopped eating all gluten that he figured that out as the cause. He has been gluten free for 3 years now and it has changed his life. He does not have celiac disease but he is gluten sensitive and also is lactose intolerant.
That really sucks. Typically gastroparesis is diagnosed after many years of diabetes. I'm very surprised you could develop it so quickly. Why did your doctor think this showed up - do you have other risk factors, or was this just the luck of the draw?
Thank you everyone for all your suggestions. I am in the process of getting a referral for a pediatric gastroenterologist. I’ll let you know how things go. I will also discuss with my son to try a gluten free diet. It is so hard to be gluten free as a kid, but if it helps his pain perhaps he will give it a try.
The ONLY definitive way to diagnose Celiac is by doing and EGD and obtaining a biopsy from the small intestine. Regardless of whether he has Celiac, Gastroparesis or not, I'd recommend a good pediatric Gastroenterologist for a thorough work up.
Also holding gluten on your own CAN alter tests, so while you may consider doing that, it can throw off a diagnosis of celiac if tested while you have been free of gluten.
Please see my above post. Holding gluten can alter test results and biopsy results. While you may be anxious to see if this is the cause of his problems or not, it is IMPORTANT the doctor for any test orders gets a definitive picture of what is going on with your child. I would not recommend going gluten free until after seeing the gastroenterologist, AND having any recommended tests performed. I was a nurse in a gastroenterology practice for several years, I know how this can alter test results.
Celiac is the first thing that comes to my mind, even with the negative test results. I know of one person whose kid had celiac symptoms for her whole life, but she was diagnosed around age 5 despite having multiple negative blood tests. I have a neighbor who had the same thing happen to her as an adult.
The other thing is a food allergy. This is not the same thing as an intolerance. Some allergies (wheat, milk, eggs, soy) tend to be mild and may cause stomach pain or other symptoms. Others tend to be more severe (shellfish, tree nuts, peanuts) and can cause scary things like anaphylaxis. These allergies often cross (I know someone who only gets hives when she eats walnuts and I know someone else who will go into anaphylactic shock if she eats wheat), but those are basic guidelines. Not all food allergies are severe, but they all need to be treated. If he really doesn't have celiac, you may want to visit an allergist.
I'd go to a gastro first, then an allergist. Don't eliminate foods on your own because this cause cause nutritional deficiencies and it can also screw up tests. Additionally, if it's a food allergy, it might be very hard to figure it out just from eliminating things until you get it right--allergy testing would be far better.
I agree with what a lot of people have said about celiac disease or a gluten intolerance. I tested negative for celiac disease via a blood test, but my endo said that the blood test actually does turn back some false negatives, so I could still have it. She suggested I try cutting out gluten for awhile to see if it helped, and it helped SO MUCH! I personally opted not to get the endoscopy (which is the only way to definitively diagnose celiac disease) and have just cut gluten out of my diet altogether. I also have a lactose intolerance too, so between avoiding those two things, it has helped tremendously. Good luck finding out answers!
Another important factor might be the digestion of artificial sweeteners and fructose. I became very sensitive to them over the years. Even fructose can cause great problems like stomach pains, bloating and so forth. I loved to drink diet lemonades just for diversion from water but today these lemonades are a No-Go for me. I had to eleminate all of them. The most problematic sweeteners are: Maltitol, Mannitol, Xylitol, Isomalt, Fructose - for me also NutraSweet/Aspartame.
