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

What Would You Do If It Was Your Child?

Nicholasmommy

Recommended Posts

Nicholasmommy Apprentice
Nicholasmommy
Posted

Ok, I have posted on here about my son's failure to thrive and that recently blood tests taken indicated that he has celiac disease.

I wasn't getting ANYWHERE with my son's pedi. He thought I was making everything up. So I heard of a doctor that helped another woman's child with his failure to thrive. I ran not walked to her office and within 5 minutes she narrowed it down to a couple of things but felt it was celiac. Well it looks like she was right.

I went to the other doctor before switching the insurance over b/c I was desparate (for good reason too.) Now the insurance company won't let me switch to this doctor until May 1st. She has been working with them to see if she can get the biospy approved but it has been several days and no luck.

Celiac disease is genetic and it runs in my son's father's side of the family pretty badly. The doctor believes that it is Celiac and so do I. Looking back it makes perfect sense. My son started having weight and height problems when solids were introduced. For months all he would eat was cherrios which gulten city. At 17 months I started to give him pedisure not knowing that it was gulten free and he grew more in 2 months than he had in the 7 months before. I don't think this happened just by chance!

So here is my problem: He has to stay on gulten until the biopsy happens. It could take weeks (or longer) at least to get the biospy done. Then what at least a week or two to get the results. I don't want to wait because important time is passing by and the longer he doesn't grow because he is getting gulten the more likely he won't make up that height.

So I guess I am wondering if all signs pointed to Celiac and both you and the doctor thought it was would you for go the biopsy and just take him off gulten?

I tried a little test run for breakfast, snack, and lunch were he ate mostly gulten free and he ate more in 6 hours than he normal does in two or three days.

What would you do?

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

Celiac.com Sponsor (A8-M):


caek-is-a-lie Explorer
caek-is-a-lie
Posted

If it was my son and I had the positive blood test and knew the battle with the insurance company would lose me precious time, I'd just take him off gluten. You have a positive blood test...that should be enough proof that he has Celiac when he gets to be school age and needs special accommodations at school...but I don't know for sure since I haven't been through that part.

That's just my $0.02. I'm sure people here will have better advice than me. I hope your son feels better soon! :)

Tallforagirl Rookie
Tallforagirl
Posted
I guess I am wondering if all signs pointed to Celiac and both you and the doctor thought it was would you for go the biopsy and just take him off gulten?

What would you do?

Remember that you don't have to wait for the biopsy result to take him off gluten. Once they have done the endoscopy, you can start him on the gluten-free diet right away.

I'd still go ahead with the biopsy, regardless of whether or not you decide to take him off gluten beforehand. You may still get the "gold standard" diagnosis, and the biopsies could provide a baseline comparison for review later on just in case he doesn't make a full recovery. Plus there's always a chance that something else may come to light as a result of the endoscopy.

dilettantesteph Collaborator
dilettantesteph
Posted

You don't mention your sons age which is significant when it comes to making up height. I have read, and remember my G.I. saying it about my son, that if you catch it before puberty thats good. Sorry no references.

Apart from all that, my son was diagnosed on diet alone. He was throwing up 10 times a day, I wanted to make him better as soon as possible and didn't want to wait for tests. The pediatrician was totally understanding about it. It takes many months to get into the pediatric G.I. here. The school was a bit of a pain about it, not wanting to accept the diagnosis even though it came from his pediatrician. Now he has changed schools and there are no problems.

Often you encounter problems with the diet. You think that you are totally gluten free and still get sick. Without a certain diagnosis those difficulties are harder to handle because you can't be sure that it really is celiac. If you are sure you can struggle to find where that gluten is hiding. If not you worry about all sorts of other things that it could be. That is a good reason to wait for the biopsy as long as he isn't suffering too much.

Best of luck to you whatever you decide. If is really difficult to watch your child suffer.

HopeMum Apprentice
HopeMum
Posted

When my daughter had a positive blood test I started gluten free immediately. Then was persuaded to do the biopsy so about a week later she went 'gluten light.' I was told by the nurse for Alessio Fasano at the Center for Celiac research at University of Maryland that just a handful of Goldfish crackers per day would be enough.

It was, her biopsy was positive and we started gluten free immediately.

I thought I wouldn't be able to 'poison' her with gluten while waiting for the biopsy appointment but we treated it like medicine, I gave her the crackers at the same time every day and at least I didn't feel like I was giving up on the diet all together.

HTH

HopeMum Apprentice
HopeMum
Posted

ps, In the meantime I would hound the insurance company and threaten them with Michael Moore!

Good luck.

bear6954 Apprentice
bear6954
Posted

I did the same thing as Hopemom. My son only grew 1 1/2" between the ages of 1 and 2 and went from the 50% tile for growth to 0. My sons ped gi said he had all the symptoms - enlarged stomach, liver enzymes through the roof, the bid D - about 9 a day, throwing up at least once a day, failure to thrive etc. His blood work came back negative for celiacs. We had to wait 3 months to get the biopsy. So I would give my son one or two items with gluten a day. My sons gi dr told me to make him completely gluten-free before the biopsy and that they will stills how damage. However, I wanted to get an accurate diagnosis the first time. Our ped gi was able to see the damage during the biopsy and told us so. We went 100% gluten free that day. He called a few weeks later and stated that the biopsy results are positive so to stay gluten-free. When we went gluten light, my sons symptoms were much less. Good luck

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

Celiac.com Sponsor (A8-M):


swalker Newbie
swalker
Posted

I would take him off gluten without waiting for the biopsy.

I think the medical profession is too casual about recommending continued consumption of something that is obviously poison to that person's chemistry.

ang1e0251 Contributor
ang1e0251
Posted

I know I would suffer greatly watching my child in needless pain. You have the blood test results and the dietary response. Sounds like your new ped will back you up with dx when the insurance kicks in. You could also get a genetic test down the road if you feel you need it. While it does not dx celiac disease, it will show the genetic tendancy. That, along with the BT and dietary response would be enough evidence it would seem.

Nicholasmommy Apprentice
Nicholasmommy
Posted
  • Author

SOOOOO, I talked to the doctor and she really wants him to go in and have the biopsy.... I don't know... She said it should be early next week and that it is important so that they can rule out other things. The insurance company seems to be close to approving it.

I don't know if I agree or not.... Part of it is for me that I fought so hard and long with his old pedi b/c i knew something was wrong and he wouldn't listen to me. So when I finally find out it is something is wrong I just don't want my little boy to suffer anymore. I just want him better... This drives me nuts!

Plus I worry about putting him out... AHHH, it is going to be a long weekend.

bear6954 Apprentice
bear6954
Posted

being put under is much better than sedation in young kids. The worse part is withholding food and drink at midnight. The whole procedure takes about 30 minutes or so. My son was 2 when he had his done. He does not remember it and I was a wreck. But since the blood work was negative, I needed proof of what was wrong. After the procedure, we waited for the general to wear off and we drove 1 1/2 hr home. He was non the wiser. He does not remember it. We are getting ready to have a liver biopsy done on Ray next Friday. I am not really concerned about him being under general, I am concerned about him throwing a fit because I can not give him food or drink when he wakes up! They normally schedule these appts in the early morning to make it easier. Good luck

jmjsmomma Apprentice
jmjsmomma
Posted

My 5 yo had the biopsy in January. He was away from me for a total of 20 minutes and 1 1/2 hours after arriving at the pedi surgery center we were on our way home. 4 hours after the procedure, he was doing somersaults on my couch and eating me out of house and home :o) I know it's not for everyone, but I wanted to know EXACTLY what we were dealing with on his damaged insides.

HopeMum Apprentice
HopeMum
Posted

I was convinced to do the biopsy for several reasons. First, a gluten challenge later in life would take much longer to show damage because she already had the damage and was not healed yet.

Then, I realized it would be 'easy' to switch to gluten free now but five years down the line, would we be tempted to 'cheat' with a little birthday cake?

Also, my daughter was 18 months old, had thrived for a year and then tanked physically for 6 months, I wanted Celiac Disease either confirmed or ruled out. If there was something else wrong I didn't want to misdiagnose it.

Everything went well for the biopsy, she was totally oblivious and I would do it again.

I obviously have to say that it's not for everyone, this was just my experience.

As for giving her gluten until the biopsy, I thought I would be so upset but really, it was like a pre-operative prep and her symptoms were much less during that time then totally disappeared (no vomiting) within days of starting gluten-free diet.

Good luck with your decision.

Claire

Nicholasmommy Apprentice
Nicholasmommy
Posted
  • Author

AHHHH, it is a very long story but the insurance company is a pain in the ASS!!!! I would have no problem paying for the biopsy but I just worry that if something goes wrong we would be in deep poop. If we don't get everything sorted out with the insurance by tomorrow than it could be another month!!!! I just don't know what to do....

Woody6 Newbie
Woody6
Posted

I feel your pain....many hugs your way.

Do what is best for you and your child. Wait for the biospy, don't wait, go gluten light and wait for the biopsy....no matter what you decide it will be the right decision for you and your child. Many gave great information as to why they did what they did. :D

Archived

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

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


  • Member Statistics

    • Total Members
      132,557
    • Most Online (within 30 mins)
      7,748
    Ortega
    Newest Member
    Ortega
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.