Jump to content

  • 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 Our Content
    eNewsletter
    Donate

Shall I Insist On More Testing?!

Kate35

Recommended Posts

Kate35 Apprentice
Kate35
Posted

I just had a physical with my 10 yo son and it appears that he has not ganed even a pound in one year!!!! He grew one inch which my pediatrician thinks is completely normal. She told me to increase his calorie intake and add oil and butter to every meal...Now, because I am celiac, I did persuade her to have him tested last year and h was egatve. It was a compete celiac panel. She said you either have celiac r you don't, no need to get tested again and assured him that his poor f weight gain has to do with his Level of activity(true, he is ver active and he is also a picky eater). Also, He has been seeing a chiropractor for his mysterious join pain for year now. No explanation given...shall I insist on mor testing?...

TIA

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

I just had a physical with my 10 yo son and it appears that he has not ganed even a pound in one year!!!! He grew one inch which my pediatrician thinks is completely normal. She told me to increase his calorie intake and add oil and butter to every meal...Now, because I am celiac, I did persuade her to have him tested last year and h was egatve. It was a compete celiac panel. She said you either have celiac r you don't, no need to get tested again and assured him that his poor f weight gain has to do with his Level of activity(true, he is ver active and he is also a picky eater). Also, He has been seeing a chiropractor for his mysterious join pain for year now. No explanation given...shall I insist on mor testing?...

TIA

Your pediatrician is mistaken, you can develope celiac at any time. he needs to be retested, asap.

Roda Rising Star
Roda
Posted

Yes, ask for him to be retested! My youngest son tested negative at the time of my diagnosis. Two years later he had positive blood work. My oldest son has never tested positive on blood work and had has been tested annually since my diagnosis. He even had a negative scope. Because of the huge improvements I had seen in his little brother after going gluten free, it made me rethink trialing my oldest. He also had daily symptoms of nausea, reflux and stomach pain/bloating/gas and was falling on his growth curve. (he was small to begin with). After his scope he went gluten free. Within a month all of his symptoms were gone and he even gained 6 pounds! Three months later he did challenge gluten and became symptomatic. He was almost 11 at the time and I laid out all the pros and cons of being gluten free(no celiac diagnosis obviously). He said it wasn't that bad and wanted to stay gluten free because he felt better and was growing. It's been a little over a year now. He does get symptomatic when he gets glutenened with stomach pain, gas and bloating. Pretty tell tale that gluten is bad for him.

kb27 Apprentice
kb27
Posted

We have one son with celiac, and one who tested negative and has no symptoms. Our GI specifically said that if kid #2 ever starts growing slowly, etc. to insist on having him tested again because of the family history of celiac. Don't let a doctor tell you it's normal.

You can develop celiac at any time. You should definitely retest him.

nvsmom Community Regular
nvsmom
Posted

Hypothyroidism also has the same symptoms as celiac. TSH and TPO Ab should be checked to see if his thyroid is slow or under autoimmune attack.

If he is eating gluten, you should get him retested. If he has nonceliac gluten intolerance (NCGI) that could affect his overall health and you'll never get a positive blood test for that. Have you considered making him gluten-free regardless of the testing?

My kids tested negative but I believe my oldest (9 years old) has some sort of NCGI or he had a false negative. He gets stomach pains, headaches and his growth has slowed significantly; he's gone from taller than most friends to shorter than his peers over the last few years. It's too early to tell if it's a food issue as he just went gluten-free.

Good luck. I hope you find answers soon.

Kate35 Apprentice
Kate35
Posted
  • Author

Thank you for your replies! I got more info here than I got from my doctor...

1974girl Enthusiast
1974girl
Posted

I second everyone. First have his thyroid tested. My dd developed low thyroid at 7 and didn't grow for a year. Our pediatrician had thyroid cancer herself so she could spot a problem. I just mentioned that I thought she was shorter than she should be. They found the thyroid. She tested negative to celiac at that time and then positive 4 years later. The genes can be triggered at anytime.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Kate35 Apprentice
Kate35
Posted
  • Author

I will definitely have his thyroid checked... Interesting... It seems like most kids whose parent is a celiac develop it at some point if their lives... Or am I mistaken? My GI assured me that chances f them developing it are very slim... Like less than 10%. Now after reading your posts, it seems like almost 100%.

Cara in Boston Enthusiast
Cara in Boston
Posted

One of my boys and I have celiac. My other son (now 10) was tested at the time of our diagnosis (2 years ago) and was found to be negative. He had no symptoms, but his teeth seemed to be streaky and discolored. Our doctor at the celiac clinic at Children's Hospital decided to do an endoscopy even though his blood tests were all normal. It was negative. Our instructions are to have him tested every two years regardless of symptoms and sooner if he has any symptoms at all. He just had his annual physical, and like your son, he didn't grow as much as expected and only put on one pound. Clothes that fit him last year are now too big and he has even resorted to wearing his 7 year old brothers swim trunks because his are falling down.

He has no other symptoms at all and we are just waiting to hear back from the doctor to see if she wants to test him again, or if this is just normal 10-year-old-boy-stuff.

Bottom line, your other children could develop celiac disease at any time in their life, or not at all. There may be no symptoms at all. If there are symptoms and the testing is still negative, I would still take that child gluten free. Why wait for damage?

Cara

Kate35 Apprentice
Kate35
Posted
  • Author

I wanted to give you a quick update... I fed my son complete gluten-free diet for a week and he gained 4lbs... I don't know how to rect... He had a completely normal celiac panel test a little less than a year ago... Does it mean he is a celiac if he responded to the diet? Could he be just sensitive? I cannot stand an idea of him going through what I did... Appreciate your thoughts! TIA!!!!

GottaSki Mentor
GottaSki
Posted

It seems like most kids whose parent is a celiac develop it at some point if their lives... Or am I mistaken? My GI assured me that chances f them developing it are very slim... Like less than 10%. Now after reading your posts, it seems like almost 100%.

I believe the current number for first degree relatives (siblings, children) of someone diagnosed with Celiac Disease is 1 in 22. Although my kids are 3 for 3 so we tend to follow your theory ;)

GottaSki Mentor
GottaSki
Posted

I wanted to give you a quick update... I fed my son complete gluten-free diet for a week and he gained 4lbs... I don't know how to rect... He had a completely normal celiac panel test a little less than a year ago... Does it mean he is a celiac if he responded to the diet? Could he be just sensitive? I cannot stand an idea of him going through what I did... Appreciate your thoughts! TIA!!!!

Certainly does indicate gluten may be the problem. I agree with Cara - negative with symptoms - remove gluten and watch him improve :)

nvsmom Community Regular
nvsmom
Posted

Wow. Congrats to your son. :) He could very well be a celiac. I would stick with the diet and see if it continues. :)

Kate35 Apprentice
Kate35
Posted
  • Author

Yes, but I feel so sad... Thinking how he will go through teenage years... College? Dating? I am just driving myself insane. On one hand, I am happy that he is feeling better, but this diagnosis entails so much... I can handle it, but the idea of my kid having this... I cannot sleep, cannot eat... Anybody going through this?

GottaSki Mentor
GottaSki
Posted

Yes, but I feel so sad... Thinking how he will go through teenage years... College? Dating? I am just driving myself insane. On one hand, I am happy that he is feeling better, but this diagnosis entails so much... I can handle it, but the idea of my kid having this... I cannot sleep, cannot eat... Anybody going through this?

Mom's worry.

I can tell you that I was diagnosed when my children were teens and young adult. They have all had much improved health by living gluten-free which enables them to enjoy their teens, college experience and beyond. They all had much different symptoms - some very serious and their mom (me) became very, very ill from not being diagnosed - we all feel fortunate to know how to improve our health. The oldest has had two children with symptoms of Celiac that we were able to recognize while they were babies - so we are thankful.

All that being said - personally I went thru a very tough time when I was diagnosed and realized I had passed the genes to my kids. Give it time and try to focus on your son's improved health.

Cara in Boston Enthusiast
Cara in Boston
Posted

I think the younger you are when you are developing your future eating habits, the better. My younger son (7) and I were both diagnosed at the same time. I had a MUCH harder time dealing with the "loss" then he did. I would stress (for him) about every play date and birthday party because I didn't want him to feel left out or different. After a short while, he is used to it and it is all he knows. Last summer, I was packing him a gluten free pizza for a party he was attending at a bowling alley. I was going on and on about how his pizza wasn't going to smell as delicious as the one they are going to serve at the party, etc. etc. (just trying to prepare him for the inevitable disappointment) and he said, "Mom, stop worrying. It's only food. I'm not going to the party for the food." Wise boy. I wish I grew up thinking about food that way.

Eating gluten free has made us much more aware of what we are eating. The entire family is much healthier now.

Your son has a bright, happy future ahead. I've seen TONS of changes just since we were diagnosed (2 years) in the products available, awareness, etc. Things just keep getting better and better.

Cara

Roda Rising Star
Roda
Posted

After my 7 year old was diagnosed at 5 I developed a case of the guilties. He had had issues as a baby that in hindsite were celiac symptoms. It was because of my gluten lite diet(I didn't realize it at the time and I didn't even know anything about celiac) when I was breastfeeding him, that I eventually found out about my gluten problem. All I knew is that when he or I ate certain foods he would react horribly. He was 3 when I was diagnosed with celiac and the first thing I did was have him and his brother blood tested. When they were both negative(he was not symptomatic), I took a sigh of relief and they continued to eat a regular gluten diet. So I guess the point I'm trying to convey is that you can't look back and wonder about the would of's, could of's and should of's. You do the best you can with the information and knowledge you have at the time.

I do understand feeling bad about it. I actually took it worse when he was diagnosed than when I was. I didn't have to deal with this as a kid like him. But it does get better and before long he will be well adjusted, happy and healthy!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.