Diagnosed, Sort Of

[IMWalt]

Long story short; My daughter was diagnosed with celiac disease after a positive blood test and negative biopsy. That was three years ago. After years of abdominal cramps, bloating, gas I started having intermittant diarrhea. In addition, after years of normal blood tests, my red blood cell count, hematocrit and hemoglobin levels were all below the normal range. So, in January I decided to try a gluten-free diet. I immediately felt better and decided to visit my daughter's doc to see if I had it. I had to eat gluten again for 4 weeks, during which my symptoms returned, but both tests were negative. After the biopsy I starting eating gluten-free again and the symptoms went away. Four times since then I have experimented by eating something with gluten in it. Three times I had diarrhea and every time had cramps and gas.

When I went back to the doc, she agreed that gluten causes me a problem, and wants to do more testing to include a small-bowel follw through. She said she wants to check for Crohn's desease and or colitis. I declined. The only thing that causes me a problem is gluten. She is doing tests to find out why my iron-related counts are so low. I did agree to that.

I am discouraged, mainly because I hate being somewhere in limbo. I don't mind eating gluten-free, and actually enjoy the challenge. I live a very healthy lifestyle anyway, so a lot of cakes,, bread, etc. where not a large part of my diet anyway. I just wish I had concrete proof.

Walt

[ksymonds84]

Hi Walt,

Getting a concrete lab test is not always possible for some of us. Blood work has a 30% chance of a false negative and the endoscopy is often a hit or miss thing since the intestines are so long and its easy to miss a patch. My doctor diagnosed me based on a positive dietary response. The Mayo Clinic actually considers a positive dietary response to be a concrete answer. You can look up their website on celiac. Some members of this board have used enterolab. It is a stool test that you do at home then mail back to them overnight. It is known to be more sensitive than blood work so you may want to look into this if you need lab numbers confirming your diagnoses and its also a good source for finding other tolerances. I think that your body is telling you your answer since you feel well when off gluten and get diarreah when injesting. Our bodies are our best indicators of telling us when something is wrong or right. Your daughter being diagnosed is also a big indicator that she could have gotten this from you but your intestines are not damaged enough to show up in the lab work. Welcome to the board and keep reading and asking questions, its the best site I've found for answering all my questions concerning celiac and gluten intolerance.

[mushroom]

Ditto to what Kathy said. There is a strong inheritance factor. And some of us react later and less strongly than others and others never test positive. I felt it sufficient to know that not eating gluten made me feel better, to stay gluten free. There is even an advantage to not having the celiac diagnosis as no one can hold it against you (sneaky insurance companies, etc.)

[IMWalt]

Yes, I have decided to continue eating gluten-free. It can be a challenge, but I do most of the cooking in the house and enjoy it, and my daughter is very happy that I have joined her. A funny side benefit is work-related. I sit in meetings a large portion of my day. Before gluten-free, I was always embarassed of the noises my intestines were making. Now they are silent!

[MN Anderson]

Long story short; My daughter was diagnosed with celiac disease after a positive blood test and negative biopsy. That was three years ago. ...

Walt

HI Walt,

this is my first post. I am living gluten-free since last October 3rd and have a long story to share some time. I am an M.D., not currently working however. I've had to be my own doc over and over, and also hate being in a diagnostic 'Limbo'. But I LOVE not being distended, having the first normal stools in 20 years (spontaneous and normal), and slowly getting my iron stores and health back. I had an incredibly thorough search for other possible reasons for severe iron deficiency, including swallowing the camera-pill after my scoping, biopsies, x-rays and CT scan showed no specific problem. I hate not having biopsy-proven disease, or even positive antibody tests, but now I have my hematologist, my internist, my internist at the Mayo Clinic, my gastroenterologist, and my psychiatrist all agree with me: I have Celiac disease. A recent gluten challenge with a bowl of Wheaties resulted in several weeks of horrible symptoms (for a later discussion) with nasty diarrhea, sharp razor-blade like abdominal pain, joint and muscle aches, and flare up of my rash that looks like dermatitis herpetiformis. Took three weeks to normalize. THus... I am gluten-free! But medical confirmation would surely be nice.

May I throw a few of my many thoughts out to you? Please have your doctor run MORE tests for checking your iron stores than just your "red blood cell count, hematocrit and hemoglobin levels". Please ask for Iron, iron binding, % iron saturation and most importantly: Ferritin. Also have folate and Vitamin B12 checked. And check your MCV (size of your red cell). These need to be followed and fixed (with IRON, iron, iron) until not only your hemoglobin is well, but your ferritin is over 50. Please, please please! I would love to know how this all checks out for you, medically.

Also: everybody needs to know that when it comes to understanding and diagnosing celiac disease, we are still in the dark ages. Twenty years from now, or even five, there will be some better testing that will give scientific credibility to what we know clinically. So hang in there. Celiac disease is the most common autoimmune disorder we know about. I believe it is also the most under-diagnosed.

[IMWalt]

Thanks for that info, doc. I'm in agreement. At this point I don't care about the celiac diagnosis, but I do care about my red blood cell issue. I gave more blood last wek for folate, b12, and the full CBC panel. Waiting for that result. I'll LYK them when I get them. I just posted a topic about the "stool" issue. I also think about all the other things that may be related. When I was a kid, I had horrible growing pains, very bad teeth even though I drank lots of milk and flossed and brushed a lot, was very skinny (5'10" and 125 pounds at age 18). Things like fissures in my fingers that have disappeared, red spots on my belly that went away, sore finger joints that are all better now. I'm 51 now and just thought that was the way I was. I didn't know something like diet could have been the reason for those things.

Walt