I've Been Tested Negative For Celiac But I Want Opinions Please.

[floslunae]

My mother has severe celiac sprue. When I was six years old, she was dying from malnutrition. Luckily she found a doctor who recognized her symptoms and gave her the blood test for celiac sprue. She tested positive on 3/3 inventories. (I wish I knew the exact name of this test, I'll try to find out because I am sure there is more than one.)

She had my brother and I tested for celiac. I was 8 and he was 6. He tested positive on 2/3 inventories, where I tested positive on 1/3. We had been eating gluten our whole lives. My mother decided to put me on a gluten free diet when she said that I mysteriously lost ten pounds. She said I gained them back after the diet. She also told me that she had said to me, when I was 8, that I may not in fact have celiac. However, given that I spent the next ten years of my life terrified of eating gluten, I doubt her story.

My mother is very good intentioned, but her brush with death from severe celiac sprue made her extremely paranoid about any form of contamination. She interprets many signs of ill health as being related to celiac, even when there is no scientific proof. For her, science isn't needed...she sees celiac everywhere.

I spent the next ten years of my life, from ages 8-18, on a very strict gluten free diet. I was terrified of getting sick and was teased incessantly. For parents of kids on a gluten free diet, it is very hard on your children. I had pretzels thrown at me during lunch. I had to fight with teachers who wanted me to use fruit loops in chemistry class. I had to miss parties, leave early, or bring icky rice bread sandwiches to attend social occasions. I missed out on a lot of things.

My senior year of high school, when I was 18 years old, I was very hungry at a Halloween party and decided, on a whim, to try Qdoba (I was at a college party and I guess a certain degree of brazenness got into me). It was a wheat quesadilla, and it was one of the best things I had eaten during that 10 years. Miraculously, I had zero symptoms. Zero. Very surprising, considering that someone who wasn't allergic to wheat but hadn't eaten it during the formative years of their youth could have very well had an upset stomach. But I was absolutely fine. So I kept on trying. And now, for one whole year, I've been eating non-gluten free food, and I have no symptoms. I took a blood test 2 months after I started eating gluten and I tested completely negative (I filled 0/3 inventories).

Yet my mother keeps insisting that I still have it, reminding me that as Celiac is autoimmune, it can turn "on" or "off" at any time. I also have a condition called Raynaurd's Syndrome. It is an autoimmune disease, very harmless, that makes your fingers swell when they get cold. It has not been linked to celiac in any studies. However because it is an autoimmune disease, my mother automatically assumes they are connected, although I developed Raynaud's BEFORE I went on gluten. (This condition is not to be confused with nerve damage--I know this is related to Celiac, as my mother has it. Also, I have a very mild form of Raynaud's: my fingers swell slightly and turn red in the winter, when I'm holding a cold soda, etc. No whiteness or nerve tingling.)

Also, I have had slight hair-loss this past year, although I believe that this is concurrent with me going on birth control around the same time I went on gluten. The form of birth control I'm on, Depo-Provera, has a 1-10% incidence of associated hair-loss, so it is not surprising.

I hope to get genetic testing soon because I'm really tired of all the superstition surrounding celiac. It seems that at least the people I've met who have it are very willing to disregard medicine and science and proclaim everything as a sign of the disease. I know a lot of doctors are misinformed, but at least genetic testing should be conclusive. The blood test seems to me to be too random, because if what my mother says is true about celiac, then it really could turn on and off at any time.

Please let me know what you think about my story, especially if you have any information that might be good for me to know. I really appreciate it. My mother is very hard to talk to about this because she is hyper-concerned for me, and my doctor knows less about celiac than I do. Thanks and sorry for the long message...

[Katrala]

I think your best bet is to find a doctor who really knows his or her stuff regarding Celiac.

Given your childhood experience, it sounds to me like you are skeptical (with good reason!) and you will need proof if you do have the condition.

I have Celiac and I agree that those of it with it tend to see Celiac everywhere (some of us more than others.)

You may definitely have Celiac. Hair loss is a symptom, but, as you pointed out, the birth control is another variable that can't be completely dismissed as well.

You have another autoimmune condition, which wouldn't make Celiac such a stretch, either. Also, with your mother and brother having confirmed Celiac, while it is completely possible you don't have it, it is also more likely that you do than someone without a diagnosed close family member.

Good luck on your quest. I hope you get answers either way.

[ravenwoodglass]

It is not unheard of for a celiac child to seem to be able to go back on gluten in their late teen and young adult years. It is the reason doctors used to think that people could outgrow celiac. If you can get copies of the tests you had as a child that would be a good thing to do. If those were positive you can be pretty certain that you are indeed celiac.

You mention getting gene testing done. Please know that this is not conclusive as there are celiacs without the genes and people with the genes that never develop celiac.

[AVR1962]

There is what is a "Romance Period" for teens where the body can tolerate wheat even if the person had problems in the past. You might look it up and read about it. I think I would see about getting tested and speaking to a professional. Your mother is right that celiac is very sneaking and you don't want to doing yur body harm unknowingly.

[Katrala]

There is what is a "Romance Period" for teens where the body can tolerate wheat even if the person had problems in the past.

Interesting - I've never heard of this!

I wonder what makes it happen? (Headed to Google it now..)

[ravenwoodglass]

Interesting - I've never heard of this!

I wonder what makes it happen? (Headed to Google it now..)

Another name that doctors use for that period is the 'honeymoon period'.

[domesticactivist]

I haven't heard of celiac test results in the way you are reporting them. Can you explain what test was done and report the full results?

2 months eating gluten after a lifetime gluten-free may not have been long enough to redamage your gut enough for a positive biopsy or blood test. How much gluten were you eating before your re-test. I've heard you should be eating at least 20 grams of gluten (not just gluten containing foods) per day for 3 months.

As others have said, a honeymoon period is common. If you had a positive celiac result as a child, you've still got it and will eventually cause damage by eating gluten. People aren't just a little bit celiac or celiac for a while.

[floslunae]

Thank you guys, for your opinions--

I talked to my mother and it seems a genetic test will not be possible, because insurance will not pay for it. Also, she doesn't want me to have a genetic test in the event that something shows up and it goes on my permanent medical record. My mother is currently on my father's insurance, but she tells me that if she were to go get her own, her premium would be very high because she has diagnosed celiac sprue, and she doesn't want this to happen to me.

My brother has "gluten intolerance" listed on his medical profile. When he was younger, he had dermatitis herpeformis and was only 50% of his height bracket. However after I started eating gluten again, he confided in me that he had been cheating for years. So there is a part of me that doubts if he ever had celiac--one must remember that the conditions he had can always be explained by other things, especially since he hasn't had any side effects, as far as I know.

I'm going to order the original blood test results from my doctor, as these are the most accurate since I had been eating gluten my whole life when I had that test taken. My mother says that the doctor interpreting these results concluded that, from the testing, I did not have celiac. My only symptom was the sudden weight loss my mother told me about--again, there can always be other explanations for these things.

I'm not convinced that Raynaud's is related to celiac. I know they are both autoimmune diseases, but that does not imply genetic relatedness. I'll have to see some hard data before I believe anything.

I very much admire people with celiac, and I identify with their struggles, because I lived that life. It's not an easy one, and I hope it continues to improve as more companies and restaurants start releasing gluten-free products. But I sincerely hope that I do not have it. It's not a condition I wish upon anyone and certainly not my future children. So I can hope, and I'll get the blood test every four years or so in lieu of a genetic test and keep track of symptoms as they may come.