Sibling With Celiac

[jaimek]

My whole family had blood tests done to see if any of them had Celiac after I was diagnosed in Feb. My brother, mom and dad all came out negative. Since the blood tests are not always accurate and my brother has alot of the same symptoms that I had (headaches, diarrhea, weight loss, muscle aches, night numbness in limbs) he had an endoscopy done yesterday. The doctor who took the endoscopy said it did not look like he had any inflammation indicating celiac but they did discover that he has reflux. They took a biopsy anyway and are sending it to my doctor (who specializes in celiac). Do you guys think that he has Celiac even though his blood tests were negative and there was not any inflammation of his small intestine? Just wondering what your points of views are.... Thanks!

[judy04]

Hi,

Your brother could be in the early stages. Acid reflux is a

common symptom among Celiacs. I had a negative biopsy,

no damage to the villi, but they did find severe erosion of

the esophagus, Barrett's Ring, which has to be examined

every year because it can lead to cancer. I had one elevated

antibody (IGA) . I react violently to wheat, oats, milk, and

sometimes eggs.

I would strongly advise that your brother be watched closely.

Has he tried a gluten free diet? It would definitely help the acid

refux, headaches, and diarrhea. My brother has many of these

symptoms but refuses to be tested. I don't know how to get him

to change.

[jaimek]

Judy, thanks so much for your response. I thought it was weird for him to have the reflux since he didn't really show any symptoms of reflux. Very strange but hopefully the biopsy will show that he doesn't have celiac. I will let you know when we find out next week. I appreciate your help! I am going to print your response out and give it to my brother so he knows what to ask/tell the doctor.

[jaimek]

Well, it turns out that his endoscopy was negative for Celiac. I guess he doesn't have it. Noone in my family does. I am just the lucky one who has to live with this disease. Life is very frustrating/depressing.

[GFHeather]

Jaimek,

Hang in there! Just think the good you did getting your family to be tested -- your brother learned about his reflux problem earlier on-- which undoubtedly is a very good thing!

You're not alone feeling frustrated and sad. I think it's common for us Celiacs. We feel overwhelmed by all the precautions we must take and changes we must make -- and we feel somewhat left-out.

We Gluten-free's are here to support each other! :-) Sometimes i try to think of the good in that I've been diagnosed and have some control over the situation. I feel bad for all the Celiacs out there who haven't been diagnosed yet or have been misdiagnosed. Supposedly there are many more of us than actually get diagnosed in this country. Hopefully that will improve and we will have some strength in numbers.

There will be good days and bad days ... but I'll be hoping for lots more good days than bad for you!!