Help...This Was The Result Of My Sons Biopsy

[leecindy417]

Hello. My eight year old son has had some issues with not being able to hold bowel movements. If we are out and about and he has to go I have a two minute window to find a bathroom for him. If we are not able to get there quickly he has accidents. We went to a pediatric GI doctor who did some blood work. He said the one test came back normal while the other test also came back normal but higher then he would have liked to see. He then did a small intestine biopsy. To this he said: The biopsy looked normal but there are chronic and acute inflammatory cells that he should have been able to see during the biopsy but could not. He also said this usually is not present in celiac disease. After telling me this he then said we are going to treat it as celiac and go on a gluten free diet. Can anyone tell me if they have had similar findings in their biopsy? I would take him for a second opinion but the only other pediatric GI doctor is in his office and not available for six months. Please let me know what you think about this. One more thing. About two months ago my son was doubled over in pain or currled up in the fetal position and puking a yellowish bile. This lasted about four hours - at home, in the car, on the way to the doctor, in the doctors office, on the way to the hospital and while in the waiting room in the hospital. The pediatrician sent us to the hospital and was under the impression he had blockage in his bowel because he could not hear movement. When they put him on the table to do the ultrasound something happen and he was absoltutely fine. They found nothing wrong.

[AndrewNYC]

There are many people who have slightly elevated bloodwork and biopsies that are either negative or just unclear for celiac disease, who respond positively to the gluten free diet. It is sometimes never clear whether these people have celiac disease or not. Often times, the doctor will eventually diagnose the case as celiac disease if there is significant improvement following diet.

Gluten is generally tough on people with bad stomachs, whether or not they have celiac.

[leecindy417]

I was under the impression the villi had to show signs of damage in order for there to be a gluten allergy. Is that not the case?

There are many people who have slightly elevated bloodwork and biopsies that are either negative or just unclear for celiac disease, who respond positively to the gluten free diet. It is sometimes never clear whether these people have celiac disease or not. Often times, the doctor will eventually diagnose the case as celiac disease if there is significant improvement following diet.

Gluten is generally tough on people with bad stomachs, whether or not they have celiac.

[psawyer]

Celiac disease is not an allergy to gluten. Damage to the intestines is caused by the autoimmune response. An allergy to wheat occurs independently of celiac disease. You can have one without the other, both, or neither one.

False negatives on the biopsy are fairly common, especially in chldren. The damage may be patchy and only healthy samples might be taken. Or the disease may not have progressed enough for there to be detectable damage yet.

I'm not sure if this will help.

[leecindy417]

I am so new to all this and completely lost. If the doctor believes it to be celiac disease why would he put him a on gluten free diet? You are telling me celiac is not an allergy to gluten. Why the diet then? The biopsy showed acute and chronic inflammatory cells that he did not pick up on during the procedure and supposedly are not supportive of a celiac diagnosis. Could it be something else they are missing?

Celiac disease is not an allergy to gluten. Damage to the intestines is caused by the autoimmune response. An allergy to wheat occurs independently of celiac disease. You can have one without the other, both, or neither one.

False negatives on the biopsy are fairly common, especially in chldren. The damage may be patchy and only healthy samples might be taken. Or the disease may not have progressed enough for there to be detectable damage yet.

I'm not sure if this will help.

[mushroom]

I am so new to all this and completely lost. If the doctor believes it to be celiac disease why would he put him a on gluten free diet? You are telling me celiac is not an allergy to gluten. Why the diet then? The biopsy showed acute and chronic inflammatory cells that he did not pick up on during the procedure and supposedly are not supportive of a celiac diagnosis. Could it be something else they are missing?

Celiac disease is an autoimmune response of the body to gluten. It is this autoimmune response that causes the damage and requires the gluten free diet. An allergy to wheat is something totally different, and can cause an anaphylatic type response (the body going into shock) or a contact dermatitis from even touching gluten. It is something totally different. Many people incorrectly refer to celiac disease as a gluten allergy.

Others who do not test positive on the blood test or on the EGD biopsy have what is termed an intolerance to gluten. This intolerance can cause symptoms just as horrible as celiac disease, but the body's reaction to it is not sufficiently measurable by the blood test or the biopsy. In either case, celiac disease or gluten intolerance, the treatment is the same--a gluten free diet. The only way to find out if your son has been having an autoimmune response to gluten at this point is to put him on the gluten free diet and see how he reacts to it. A positive response to the diet is often, in the presence of other facts, considered to be diagnostic of celiac disease by some doctors. I hope this helps clarify it for you.

[psawyer]

I am so new to all this and completely lost. If the doctor believes it to be celiac disease why would he put him a on gluten free diet? You are telling me celiac is not an allergy to gluten. Why the diet then?

Celiac disease is a autoimmune reaction to gluten, not an allergic reaction. The only treatment for celiac disease is strict adherence to a 100% gluten-free diet. That is why the doctor is suggesting the diet. As mushroom said, a positive response to the diet, when taken together with all the other factors, can confirm the diagnosis.

[Fiddle-Faddle]

There are many possible causes of symptoms like your son's.

My son had very similar symptoms--and they did turn out to be caused by gluten.

We are lucky that a gluten-free diet is easily do-able, is non-invasive, has no side effects, requires no surgery, no prescriptions, and usually has fast, obvious results.

Most of us here had to struggle with our doctors to get them to even consider a gluten-free diet! Sounds like your doctor is really on top of things.