Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Clubbing Of Toenails?

ptkds

Recommended Posts

ptkds Community Regular
ptkds
Posted

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.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

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? :)

Link to comment
Share on other sites
holiday16 Enthusiast
holiday16
Posted

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

Link to comment
Share on other sites
taweavmo3 Enthusiast
taweavmo3
Posted

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.

Link to comment
Share on other sites
taweavmo3 Enthusiast
taweavmo3
Posted

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.

Link to comment
Share on other sites
nikki-uk Enthusiast
nikki-uk
Posted

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 :blink: ....... I think it may also be one of the many curious celiac disease symptoms (but hubby's been gluten-free for 4 yrs :unsure: )

Good Luck :)

Link to comment
Share on other sites
Amyleigh0007 Enthusiast
Amyleigh0007
Posted

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.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


casnco Enthusiast
casnco
Posted
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.

Link to comment
Share on other sites
strawberrygm Enthusiast
strawberrygm
Posted

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!

Link to comment
Share on other sites
ptkds Community Regular
ptkds
  • Author
Posted

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!

Link to comment
Share on other sites
jerseyangel Proficient
jerseyangel
Posted

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

Link to comment
Share on other sites
casnco Enthusiast
casnco
Posted
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.

Link to comment
Share on other sites
ang1e0251 Contributor
ang1e0251
Posted

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.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity...
    2. Nacina
      - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy...
    3. trents
      - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo the "gluten challenge" before testing but you need to understand that the...
    4. Fluka66
      - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this...
    5. Moodiefoodie
      - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well. I also...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748
    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
×
×
  • Create New...