Clubbing Of Toenails?

[ptkds]

Ok, I need some help or advice. My 3 yr old dd has been gluten-free for 2 yrs now since she was diagnosed at only 16 months old. She also has a heart murmur and 2 seperate bleeding disorders (von Willebrands and Factor VII defeciency). Her fingernails have looked kind of funny for quite a while now. They are kind of bumpy and there is a white stripe across them close to the ends. It is hard to explain, but that is the best I can do for now!

Tonight, I was trimming her tonails and I noticed that they are REALLY curved. It is called "clubbing." At least, that is what it looks like to me. I have looked it up and her toenails look just like the pics and diagrams. Her fingernails kind of look like it too, but not as bad.

So, here's my problem. Under the list of possible causes, it has Celiac disease. But wouldn't they mean untreated Celiac? Meaning, if she is gluten-free (which she is), then there should be no clubbing, right? Clubbing can also be caused by a number of other things like lung or heart disorders.

Lately she has been pretty pale, and sometimes pretty lethargic. She sleeps more than her little sister. Every day she wakes up not feeling good. But after a while, she perks up. I asked her tonight if it was hard to breath and I took a deep breath to show her what I meant, and she said yes. I asked if it hurt, and she said yes, so I asked her where and she pointed to her chest. She isn't very good at speech, so I don't know how much of that I can trust, but I am still worried.

Has anyone else ever noticed clubbing or other nail problems on a Celiac that is on a gluten-free diet?

Should I be really concerned? I don't know if I am just overreacting or what. My hubby and I have had a feeling for about 10 yrs that we would lose one of our kids, and now all this stuff just seems to be coming up with her. I am so scared that something is wrong with her and the doctors will miss it until it is too late or something. I just have a bad feeling that something will happen to my precious little girl.

Thanks for listening to me! Any advice or ideas would be helpful. I think I will take her to the pedi, but I am just not sure how strongly I should pursue all of this.

[jerseyangel]

You poor thing--you sound worried sick. I don't have an answer for the clubbing or her other symptoms. I'm sure you're on top of it, but have you gone through everything she consumes, you use on her topically, her suppliments/meds, and things like finger paints and other things that could somehow come in contact with her mouth?

Sometimes manufacturers change formulas--or even manufacturing procedures. I got caught myself over the summer for 2 months, eating shelled nuts that used to be safe, only now the company runs them on shared lines with wheat. I never thought to read the label, since I though they were fine.

I would most definately take her into the doctor and have them take a look. Go with your gut--if you feel strongly that this is something you should persue, then by all means do. Most times, things that we worry about never happen but why put yourself through this?

[holiday16]

My son has clubbing of his fingers and toes, but he was born with a severe heart defect. He has oxygen saturation levels in the 70's and 80's for the first 3 years of his life which is what led to the clubbing. It's caused by a lack of oxygen. If she has a heart mumur and from the symptoms you described I would get her in ASAP to make sure it's not heart related. All the things you mentioned are all warning signs and things I've been on the lookout for for years with my son. With her symptoms you may want to push them to do an echo if one has not been done already.

Go with your gut feeling on this.

Paulette

[taweavmo3]

Just wanted to reiterate what Paulette said. Your dd needs to get seen as soon as possible and have an echo, things could have changed. Clubbing is caused by lack of oxygen, which goes along with pale color and lethargy. I've seen clubbing in kids with severe heart defects and after years and years of bad asthma or other respiratory diseases. Not to scare you, but I would call and insist on getting her seen now.....I really don't think it's Celiac related.

[taweavmo3]

I also wanted to add......if you can't get into a specialist soon, you can just bring her into a general ped or any doctor and at least get her oxygen saturation checked. It's super easy, and if it is low, they will get the ball rolling from there. Good luck, I think your intuition is right on with this one and it's good you caught it. Take care.

[nikki-uk]

All good advise

I too have a son who was born with a heart defect - he had the clubbing and ridges on his nails..........but ....my hubby (a coeliac) with NO heart problems also has clubbed nails ....... I think it may also be one of the many curious celiac disease symptoms (but hubby's been gluten-free for 4 yrs )

Good Luck

[Amyleigh0007]

YES! My son's toenails were very curved too! I always thought that was so odd, but it wasn't until he had been gluten free for several months before I realized it was from lack of vitamins. His body just wasn't absorbing anything. His nails are normal now.

[casnco]

Ok, I need some help or advice. My 3 yr old dd has been gluten-free for 2 yrs now since she was diagnosed at only 16 months old. She also has a heart murmur and 2 seperate bleeding disorders (von Willebrands and Factor VII defeciency). Her fingernails have looked kind of funny for quite a while now. They are kind of bumpy and there is a white stripe across them close to the ends. It is hard to explain, but that is the best I can do for now!

Tonight, I was trimming her tonails and I noticed that they are REALLY curved. It is called "clubbing." At least, that is what it looks like to me. I have looked it up and her toenails look just like the pics and diagrams. Her fingernails kind of look like it too, but not as bad.

So, here's my problem. Under the list of possible causes, it has Celiac disease. But wouldn't they mean untreated Celiac? Meaning, if she is gluten-free (which she is), then there should be no clubbing, right? Clubbing can also be caused by a number of other things like lung or heart disorders.

Lately she has been pretty pale, and sometimes pretty lethargic. She sleeps more than her little sister. Every day she wakes up not feeling good. But after a while, she perks up. I asked her tonight if it was hard to breath and I took a deep breath to show her what I meant, and she said yes. I asked if it hurt, and she said yes, so I asked her where and she pointed to her chest. She isn't very good at speech, so I don't know how much of that I can trust, but I am still worried.

Has anyone else ever noticed clubbing or other nail problems on a Celiac that is on a gluten-free diet?

Should I be really concerned? I don't know if I am just overreacting or what. My hubby and I have had a feeling for about 10 yrs that we would lose one of our kids, and now all this stuff just seems to be coming up with her. I am so scared that something is wrong with her and the doctors will miss it until it is too late or something. I just have a bad feeling that something will happen to my precious little girl.

Thanks for listening to me! Any advice or ideas would be helpful. I think I will take her to the pedi, but I am just not sure how strongly I should pursue all of this.

This crazy celiac Disease causes so many crazy symptoms that I would not be suprized to hear that was the cause of the clubbing. However, I work with people everyday with pulmonary/heart issues who have clubbing and it is caused by a lack of oxygen. Lethergy is caused by an increase in carbon dioxide. both related 2 breathing. Is your daughter difficult to arrouse? Does her head hurt when she wakes up? Those are also signs she is not breathing deep enough while sleeping. Have you observed her sleep closely? Does she take long pauses where she does not breath? This sounds worth investigating. I don't know how good your pediatrician is but I would want to see a pulmonologist to rule out any breathing/heart related disorders.

Good Luck and I pray it is something simple and nothing to worry about.

[strawberrygm]

wow.

i have never heard of clubbed nails. after reading this, i looked up pics of it. my nails curve under as well. i dont have the swollen look. i have the random white lines in my nails as well. i havent been tested for celiac, as i am currently without insurance. i have read that celiac is more common in ppl with european heritage, my mother is german. the more signs and symptoms i see of celiac, the more convinced i am that my dd inherited it from me.

back to your dd. i agree with the others. go with your gut, push until you have all the answers you need. there is nothing more scary than the thought of loosing a child. i completely understand where you are coming from. when my dd was 3, they tested her 3 times for cystic fibrosis before getting a negative result. she has been so sick all of her life and the first 2 tests were right on the line. i can remember getting in the shower in her hospital room sobbing hysterically b/c no one could tell me why she was so sick all the time and what was wrong with her. it is a paralyzing feeling. i will certainly be praying for you and your family. if you would like to talk, feel free to email or pm me!

[ptkds]

I just wanted to give yall a little update. I took dd to the pedi on Friday. She gave me the " this is normal, my kids have had it, and it is just her age" line. She did do a CBC since she has bleeding disorders. She said everything was ok, just looked like she probably has a virus (even though my dd hasn't been sick like that in quite a while) and she was slightly anemic. I don't know what to do anymore. I am thinking I will just wait until we see her hematologist in January unless something else comes up. She is also supposed to go to her cardiologist next June for a re-evaluation of her murmur. I am still worried that something is being missed and I am being pegged by the dr.s as a neurotic mom.

Thanks for all the support!

[jerseyangel]

Thanks for the update--and please keep us posted.

[casnco]

I just wanted to give yall a little update. I took dd to the pedi on Friday. She gave me the " this is normal, my kids have had it, and it is just her age" line. She did do a CBC since she has bleeding disorders. She said everything was ok, just looked like she probably has a virus (even though my dd hasn't been sick like that in quite a while) and she was slightly anemic. I don't know what to do anymore. I am thinking I will just wait until we see her hematologist in January unless something else comes up. She is also supposed to go to her cardiologist next June for a re-evaluation of her murmur. I am still worried that something is being missed and I am being pegged by the dr.s as a neurotic mom.

Thanks for all the support!

Doctors! UGH! Does her daughters fingers and toes that club? She must also have a child with unexplained illnesses, or maybe even celiac. Sorry, can't help myself sometimes.

Are your dd nailbeds pink, except for the white line? They should be the same color as yours regardless of the disfiguration. If they are not pink then I would pursue this further. If they are pink and you are comfortable with the pedi answer, your good.

Never feel that you are neurotic. Keep a smile and be firm not nasty. You deserve answers.

[ang1e0251]

Why can't you call your cardiologist's nurse for advice? I have found that nurses are very effective advocates and knowledgable too. Describe the symptoms that more strongly point to her heart and say you don't know if this is something serious or if she's well enough to wait for the appointment. Just ask the nurse what do you think? If it is serious, they will probably see you right away, if not they will reasure you. I think a Mother's instincts supercede "it's just a virus". The most they can say is no and you won't be any worse off than you are now.