Opinions, Please

[AnObstinateOne]

Long story short:

My sister is celiac. So we have a family history that points us in this direction.

My son has had steattorhea since before he was a year old. In the past 3 years, he's quit growing (but held steady on weight) and continued with the steattorhea (yuk!) Been to gastro numerous times. Had celiac panel and celiac genetic test. Celiac panel showed borderline positive TTG with normal IgA. Celiac genetic test was negative for DQ2 and DQ8. Gastro said celiac is impossible. No endo necessary right now. Lets wait and see.

My daughter, who is 2 years younger then my son, began to have the diarrhea I was all too familiar with. Sure enough, steattorhea. And then had weight loss. She's been tested multiple times for cystic fibrosis, which she does not have. Was sent to a (different) gastro, who did an endoscopy immediately (within two months). Said her gut looked normal, did a biopsy of her small intestine and samples of her stomach juices (yum). When results FINALLY came in, gut was clean and healthy. Found to be deficient in pancreatic enzymes, started on replacement enzymes, and everything is peachy. Had lots of problems with that gastros office (doc was wonderful, but impossible to get in touch with. office people were inept, lazy, and unreachable as well.) so I took her to my sons gastro. He did a celiac panel, but her IgA was low, so he said can't tell anything.

Fast forward to this month. Saw gastro for followup. Said daughter is doing well, keep on. We'll never know why her pancreas isn't working properly. Can't say she's not celiac as well. Finally decided to perform an endoscopy on son, since he continues to have the diarrhea. Everyone, of course, is betting that he has a pancreatic problem like his sister.

My question for you all:

wouldn't the positive ttg be a marker for celiac? Everything I read online says even a borderline positive with normal iga is a very clear indication something isn't right. Even though his genetic markers came back negative, there is a very small but definite percentage of true celiacs who do not carry either gene. Even daughters first gastro, when I asked about sons positive test, said he needed to be scoped.

Can they SEE any damage when they do the endo? How long does it take for test results? I know I should know this, since my other child had this done, but I'm sure it's not normal to wait 3 months. Or am I wrong?

Thanks for any insight. And you each get a cookie for reaching the end of this supposedly short story

[gfpaperdoll]

well your kids could have DQ1 or DQ3 genes. You could test thru Enterolab.com

The problem with the DQ1 & DQ3 genes, which are referred to as the "gluten Intolerant" genes is that they can kill you if you are eating gluten, before you get any damage to the villi.

The whole medical community is totally missing a huge section of people that have problems with gluten, the celiac gene ones are easy to diagnose & will fit the doctors narrow minded idea of what celiac disease really is.

& yes, one postive blood test means there is a gluten problem.

when you have a gluten problem that means that any organ in the body can be attacked, including the brain. It also means that you will more than likely have other food intolerances and have neurological problems, such as ADD, ADHD, insomnia, headaches, Seizures, depression, MS, stuff like that. All of which is helped or cured on a gluten-free/CF diet. Most of the DQ1 people I know cannot eat dairy.

& the bad news is that if you are double DQ1 or double DQ3 it is usually worse than having say a DQ1 & a DQ3. Also, it is usually worse than having a DQ2 & a DQ1, or one celiac gene & one gluten intolerant gene. So since you know your kids do not have DQ2 or DQ8 their chances just went up that they could be double DQ1.

I would take your kids gluten-free immediately & test them thru Enterolab.com

I just met a lady last week, she had brought her "mentally challanged" daughter to a gathering. She said that her daughter was 26 & could not remember anything, she said that she was in pain from rheumatoid arthritis. I said "does she have any other autoimmune illnesses"? The lady looked at me like, how did you know. & yes the daughter also had fibromyalgia, asthma & acid reflux. She had surgery twice for the acid reflux but still had it, & problems sleeping. The mom said & I have lupus & rheumatoid arthritis. the daughter had just lost about 70 lbs & was still a little overweight, well not so much overweight but had a tummy that stuck way out there & she was not PG. I said "you need to check into celiac disease". People at the table that knew me, I am sure were rolling their eyes. Then the mom says there are three people in my family that have celiac, my brothers & I think she said a niece. She said I had my daughter tested for celiac & she tested negative. I cried. I mean it is just so awful that these doctors are telling people that they are negative & they do not tell them to try the diet. Because the blood tests are useless to diagnose gluten intolerance... the dietary trial is the REAL diagnosis. I gave the mom some info & will be calling her this week... I would bet a month's salary that the daughter is double DQ1.

I am double DQ1 as is most of my family, I am 61...

[ravenwoodglass]

The previous post almost brought me to tears. It is so telling of my story.

I was tested over and over and over for years and never told to try the diet, because I am not technically genetically defined celiac. I am a double DQ3 and I was almost dead before an allergist finally did an elimination diet and found the celiac.

And yes by the time I was finally diagnosed I had been in a full blown celiac state for almost 15 years. I suffered daily D for 10 years and then the last 5 were day and night with extreme pain.

My not being recognized as a celiac cost me my health, my marriage and my childrens health. Both of my children were celiac also, but they never tested. The idea that only those 2 genes are responsible for the celiac spectrum is so false that it is scary, and makes a lot of money for the doctors and the drug companies. My life would have been so very different if they had just diagnosed me in childhood. I had full body DH for my entire childhood, diagnosed as having poison ivy in my blood stream. That was their explination for why I was covered in blister 12 months of the year.

The celiac depression also hit me in childhood. I didn't know why I was so depressed at 11 and I committed suicide. The doctors told my Mom it was a miracle when I woke up in intensive care. I would suffer bouts of extreme depression for 34 more years, I haven't had a depressive episode since gluten-free, except when glutened.

Why am I telling you this miserable story? Well because if your young ones carry a gluten intolerant gene the same scenerio may play out in their lives also, my son and daughter went throught the same thing and were almost killed by the side effects of the antidepressants they were given. Celiac disease effects so much more than the gut, and for some of us the mental effects can show up long before GI disease becomes more than an occasional issue. Many vital organs can be negatively impacted long before doctors think to test. And if you don't have those 2 magic genes most doctors will dismiss and not even bother to suggest the diet. That allergist saved my life, non of the doctors I saw in my last 15 years of serious daily D even thought of it. 6 months before I was diagnosed my youngest child told me the family would understand if I committed suicide. What my children have had to live their entire childhoods watching had serious impacts on them, no child should have to watch their Mother slowly die just because doctors don't think to suggest a diet. And no mother should have to watch their child struggle with learning, freindships (moodiness sure does impact those), stomach pain, joint and muscle issues and their growth and well being blown off the charts.

Noone needs the permission of these doctor-gods to eat gluten free. If the diet helps the diet should be adhered to. No matter what those gene tests say.