Anyone Diagnosed Despite No Symptoms?

[Mae1118]

I am just wondering if there is anyone out there in a similar situation to mine. I went to the doctor complaining of feeling a little tired. I wasn't sure if it was even a big deal, but my doctor was very thorough, and because I mentioned that I have an uncle and a cousin with celiac disease, he ordered an IgA-tTg, as well as several other blood tests. Most of my tests came back normal - no anemia, hypothyroidism, or vitamin D deficiency, blood counts and blood chemistry all normal. My IgA-tTg, however was around 100, which I know is a rather significant positive. I was sent to a celiac specialist who has ordered a biopsy, and I am waiting now to have it scheduled. I know that the blood test is supposed to be 96% specific for the disease, so I guess I am just grasping at straws, but it is hard for me to believe that this all came from my complaint of feeling "a little tired." I feel otherwise healthy, and I have a toddler and an infant who are healthy. I find it hard to believe that if I were malnourished in any way that my pregnancies would have been so healthy or that my infant, who is breastfed, would be gaining weight so well, especially if I am not losing any weight. My toddler has also been tested, and we are waiting for the results now. I was told at this point that my infant was too young to worry about testing him right now. I would love to hear from anyone with similar circumstances! Thanks!

[Fiddle-Faddle]

Pregnancy is often a trigger in adult-onset celiac (for women, anyway ).

You are SO lucky to have been diagnosed before you were obviously damaged (though the biopsy may show damage that you never felt).

If your blood work is positive, that means that you are making antibodies to gluten. Healthy people are not supposed to make antibodies to gluten. You are also making antibodies (triggered by gluten) that attack YOU (thyroid, pancreas, skin, even brain). You really don't want to wait until that happens, if it hasn't already.

Celiac is the easiest and cheapest disease in the world to turn around--all you have to do is avoid the one substance that your body views as toxic. No surgery, no expensive meds, no therapy.

My own intestinal symptoms were relatively mild--if you had asked me if I had any, I would have said "no. " But then I went off gluten, and it was like, "oh, THAT'S what my tummy is supposed to feel like!"

I'm betting that you will feel a whole lot better on the gluten-free diet, and that tiredness you were ascribing to being a new mom was from gluten all along.

Good for you for nursing, and stick around and ask lots of questions. And yes, gluten DOES go through breast milk, so if you have a family history, it's good that you are off of it.

[Green Eyes]

Hello Mae,

I am one of those people diagnosed with "no symptoms." A biospy was done because I was anemic. I had not felt bad, lost weight, nothing else. Until after I went gluten free I realized some of the things in "normal life" were attributed to gluten - extremely mild cases of gas, bloating, etc.

Although I had no major signs of problems the GI doctor informed my my villa was "nubs" and the "worst case she had ever seen." I also have a mild reaction to gluten when accidents happen. It took 5 days of taking vitamins with gluten for me to get sick and realize what the problem was.

Although my symptoms are mild, I stick to the gluten free diet strictly. Even though the consequences are not severe, I would still be damaging my intestine and that will develop into other illnesses.

Jennifer

[Jacqui S]

Hello, My 16 year old daughter had conjunctivitis and I took her to see our Doctor who gave her drops and while we were there he noticed how thin and tall she is and popped her on the scales he asked about her diet etc. I think they always think that she may have anorexia... I explained that she has two weet bix for breaky, and has plenty for morning tea at school, but doesn't eat much at the night time meal. She has always had a small appetite. I have taken her to the dietitian and tried to put weight on her, with some success. I asked if there was any vitamin supplement that he could give her to help build her up and he said no, but he could do a screen for coeliacs disease, because if she had that she wouldn't be absorbing nutrients from her food and hence not gaining weight. I thought, maybe that's it, all these years I've been trying to fatten her up, popping eggs in milkshakes and nagging her to eat! but she has no symptoms. No diahorreha, no bloating, not unwell~~!!anyway we proceeded with the blood tests to rule it out. The next week he rang me back and asked me to bring Sarah back in to see him, that the blood tests had came back positive for coeliacs disease. I'm not sure which ones they were but he said that both of them were in the 90% positive? He has organised for her to have a gastroscopy to look at her intestines to see if there is any damage. My husband and I were shocked! Is there any chance that the biopsy could come back negative? The doctor said that it is hereditary so all of the family should be tested. I've been googling on the web and I can relate to the tiredness!!! but I'm not as thin as my daughter. My youngest daughter has thin hair and I'm wondering maybe she has it? It's scary to think that you can have something like this and not know.. Sarah is a typical teenager, head strong and stubborn. . . I'm going to have a battle getting her to go gluten free. She thinks it's done no damage to her now so why does she have to give up all her favourite foods? We have to keep her on a normal diet until she has the gastroscopy. Were wondering which one of us has it also, my husband or me??? Sarah must have got it from someone or can you just get it yourself??

[elye]

I was another silent celiac - - no symptoms before diagnosis with the exception of low iron. Talk about being shocked.....I thought that they had confused my blood test with someone else's!

Celiac disease is hereditary, so it has come to you from one side of your family (or perhaps BOTH sides....my husband is also celiac). It is generally advised that all first-term relatives of those diagnosed get tested, as well.

[Mae1118]

Thank you all for your responses. It's not really what I want to hear, but realistically it sounds like I might have celiac despite my lack of symptoms (well, except for the fatigue). I am still holding out hope just a bit though. I keep coming back to the fact that I just had 2 relatively healthy pregnancies, and that even now, with my son having been exclusively breastfed until starting solid foods about 2 months ago, I would have expected him to not be gaining weight well or that I would be losing weight like crazy. And all of my other bloodwork is normal - no anemia or other deficiencies that they found. I guess all I can do is wait and see.

Fiddle-Faddle - Thank you, and I do keep trying to remember that you are right, and if I do have celiac, that I am lucky that it was found now while I am not having any problems. It is frustrating right now to think that I might end up on this restrictive diet when I mostly feel fine. However, I am trying to keep in mind that if 10 or 20 years from now I was just finding out that I had celiac because I was dying of intestinal cancer, the fact that I could have prevented it with a simple diet would seem like a missed opportunity, rather than the burden that it may seem like now. Hopefully, I will at least be one of those who feel much better anyway on the diet, even though I don't think I have symptoms now. That would at least make it easier to stay on the diet!

Jacqui - I would be very interested to hear what happens with your daughter's endoscopy, since you all seem to be in the same place that I am right now with the waiting (sigh...) Her story is also interesting to me, because although my daughter is only 2 (almost 3), she is also very tall and thin for her age and always has been since birth. Her pediatrician does not think that she has celiac, based on her history (but then, who would think I would, either), but she wanted to do the blood tests anyway to be sure, so now we are waiting on that, too. Please feel free to send me a message and let me know how you all are doing.

[ElseB]

I was also asymptomatic, and still am (there's been a few accidental gluten ingestions with no reaction). My doctor tested me because I was taking too long to recover from a C.Difficile infection. My blood test was positive, as was obviously the biopsy. There's no Celiac Disease in my family, so it was a huge shock. I kept thinking, if I've got this disease and am supposedly malnourished, how is it that I feel perfectly healthly and was able to run 2 marathons? But I guess there's a bright side.....diagnosis without ever really getting sick. I've read sooooooooo many stories of people being sick for years and years and no one can tell them what is wrong.

[AMQmom]

Hey there! My daughter, Analise MAE, was diagnosed with no symptoms (or so we thought). Her little sister got really sick and it was celiac. We all got tested after the little one's diagnosis. Analise was very celiac. Her scope showed lots of damage and she had already acquired another auto-immune disease. We never would have known if her little sister did not show physical signs. Since gluten free, Analise has become much happier, easier to reason with and less prone to melt-downs. We were getting really worried about her emotional "issues" prior to the celiac fiasco. Soooo....we thought that there were no symptoms, but hind-site showed us that she was depressed and unable to be reasonable. She was celiac so long that she didn't know what it felt like to feel "well" and talks about how she had headaches, ringing ears, stomach aches, backaches (all things that she never told us because she didn't know life different). Life is good now!!!! The diet change is healthy, you get used to it and find great pleasures in simple things, she is thriving an enjoying life like she didn't know she could. Sleep has also improved. I hope, on the one hand, that you are not celiac - but on the other - there is a light at the end of the tunnel! I promise.