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

Why Can't Doctors Agree?

Stephanie7297

Recommended Posts

Stephanie7297 Newbie
Stephanie7297
Posted
:( Okay...well I just took my sons to see the New GI doc (old GI doc is retiring) and I must say that I am not impressed..Just looking for opinions here..and it's been a while since I posted (last time I posted was on the "old" board). My oldest son, Daniel, is 4 years old. First noticed that we were having problems when he was 18 months old (he basically stopped growing). Took Pediatrician til he was three to say okay there's something wrong here..Does a slew of lab work. On first round of labs everything came back wnl...2nd round of labs and a bone age everything came back not normal...IGG 118 and IGA of 48. Carotene 6. TTGAB was negative. Biopsy showed long and intact villi but patchy inflammation. oh Bone Age was 2 years 1 month (He was 3 years 6 months old at the time). Pediatrician said to try him on a gluten-free diet for 6 months, eventhough GI doc said to leave him on a reg. diet. 6 months later and still gluten-free, he is catching up on his height and weight, has more energy and no longer has dark circles under his eyes (a new child!!- and Mommy is a Happy Camper!)..Now he saw his GI doc today...He says biopsy neg., ttgab neg, therefore no need of gluten-free diet. However his pediatrician disagrees and says that due to my sons response to gluten-free diet that he feels he has Gluten Enteropathy (went from wearing 18 month old clothes to now weaing 4T and 5T clothes all in 8 months). So now GI doc is d/c'ing his Reflux Meds (Reglan and Zantac) and wants me to put my dear baby on Gluten again and says if he starts having problems then give me a call.. I say NOT!! I have seen too much improvement in my son the last year (almost a year gluten-free- Feb. 18 2003) to even want to try and give him Gluten Again...No Way!...I guess what I really need is your guys opinions...I think I am doing what is right in the best interest of my son but it would be nice to have others opinions to confirm this feeling...so...Give your opinions...Thanks soo much in advance...Stephanie7297..Mother of 2 boys (1 with what I feel is CS, the youngest with GER, Gastroparesis and a upcoming EGD w/biopsy)
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

Stephanie:

I would leave him on the gluten-free diet for the rest of his life especially since you can see that much of an improvement in him!!!! That is an awesome!!! :)

If he has been gluten-free for 6 months of course the bloodwork and biopsy would come back normal! I do not know why a doctor would tell you to put your child back on gluten after the results from going gluten-free!

You are doing the right thing by not wanting to put him back on gluten! Stand your ground and protect your precious boys!

concernedlady Rookie
concernedlady
Posted

Stephanie,

I agree with your good "gut" instincts! I agree 100% with Stacie's wonderful advice!

I have some "gastric reflux tips" that you can take a look at, that are drug-free. See Appendix B, on webpage 10 of my website. Here's a link:

Open Original Shared Link

Sincerely, Carol

Open Original Shared Link

DLayman Apprentice
DLayman
Posted

Go hit the doctor upside the head and say NO! Or say.. ok I'll put him back on gluten if you keep him for a week... hehehehe.

I really dont understand what their problem is. THEY don't have to do the diet.. it's no skin off their back!!!

Just because he showed little damage is no reason to say oh well no it's not that.. I would say that is a reason to be happy because YOU CAUGHT IT EARLY!!! Early enough to prevent him from further damage!!! REJOICE!

I really don't understand either..

And I am soooo scared of the words.. inconclusive, and patchy damage! I really REALLY hope I don't hear them next week after my son's endoscopy!

I guess all I can do is sympathize with you, and say the gluten-free diet isn't HURTING him so don't change it you already have a DX as far as your pediatrician and old doc are concerned.

SofiEmiMom Enthusiast
SofiEmiMom
Posted

Your are surely doing the right thing. The progress you noted regarding your son was amazing!

We've gone through a similiar experience. My now 19 month old was very sick for the first 14 months of her life. She had 10+ diarrhea diapers a day, never slept for more than 2 hours straight through the night, and didn't take naps. She constantly cried and had a huge pot belly. My pediatrician kept telling me it was behavioral until at 14 months I went back in and said to the doctor "something is wrong and I want tests run - now" So we went through multiple tests including the endoscopy with biopsy. As I studied everything the doctor was testing her for everything with celiac disease fit. At the time I didn't know that withdrawal of gluten could affect the test result. So prior to the biopsy my daughter had been gluten-free for two weeks. The change in her was staggering. She was a different baby. Needless to say the biopsy came back negative. The GI doctor told me that he thought 'maybe' it was allergies. Well, due to the amazing changes my daughter had my pediatrician diagnosed her with gluten intolerance. She also admitted that I probably knew more about Celiac than she did since it just isn't something that they even study in med school or are trained to look for. As for the GI doctor, it doesn't bother me that he refuses to diagnose my daughter with celiac disease. Doctors have to follow a subset of guidelines to make a diagnoses. In order to be diagnosed with Celiac disease in the United States at this time a positive biopsy of flattened villi has to be present. What the doctors fail to realize is that so many factors can affect the outcome of the biopsy - where the biopsy was taken in the intestine (damage to the villi generally occurs in patches, not over the entire intestine), was gluten withdrawen from the diet prior to the biopsy, was the pathologist reading the biopsy properly trained to spot damaged villi, the list goes on. I certainly understand wanting a definitive diagnoses by a medical doctor. We turned to Enterolab for that (although there are differing opinions about the credibility of the tests). What I learned most about my experience in diagnosing my children (and myself) is to follow your intuition. A person's intuition is very strong. I knew very early on that something was not right - and I regret not following my insticts sooner. You do have to be strong in your convictions and beliefs of your diagnosis, however, because it is a challenge to be gluten-free in our society.

Good luck to you!

gf4life Enthusiast
gf4life
Posted

Stephanie 7297,

You are doing the right thing. Keep your son on the diet and change GI doctors. Just because you saw the previous doctor, does not mean you have to see the new one. Your pediatrician is a keeper though! :) If you want a little bit of "proof" that your son does have Celiac Disease, then you could ask your pediatrician to order the gene test. If your son had HLA DQ2 or HLA DQ8, then he has the genetic predisposition to the disease. That, with the positive IGG and IGA tests, and the wonderful improvement on the diet in such a short amount of time should be enough. Ask your pediatrician to make sure it is in his chart that he has celiac disease. You should not have to prove anything to a doctor who came in after the fact and never saw your son when he was sick.

Also, I met my children's new doctor yesterday, and I was so happy. He is a wonderful doctor and very knowledgable with celiac disease. He does the gene test first, since if they don't have the gene they can't have the disease, right? And he only uses Promethius labs. He said that most labs aren't skilled enough to diagnose celiac disease and he wants to know that he can trust the results of the tests. I thought this was great. Then he told me something that I had never read before. He said that the lab needs to use human tissue transglutiminase for the tTg test to be accurate for Celiac Disease, and most labs use pig tissue transglutiminase. This will not give an accurate reading of the tTg antibodies in the blood. So even the most reliable of the celiac blood tests will be wrong if it is not done right. And most labs are not skilled at recognizing the damage on the tissue samples taken during the endoscopy. So it is actually very common for someone with celiac disease to have negative test results in regards to the blood tests and biopsy.

I am so glad to know that your son is doing so well on the diet.

God bless,

Mariann :)

Stephanie7297 Newbie
Stephanie7297
Posted
  • Author

His previous GI ordered the HLADQ2 but the results hadn't come back when he saw the New GI (must admit laziness on my part- forgot that he had to have them done and so they didn't get done until the week before his appt). But I am going to make sure that his pediatrician keeps a eye out for it (just want to know what the results were as my son doesn't take being poked by needles very well), but to be honest I am not sure it matters...given his favorable response to the diet I am not planning on taking him off of it anytime soon...Thank You all for your continued support..Steph :D

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

Celiac.com Sponsor (A8-M):


Stephanie7297 Newbie
Stephanie7297
Posted
  • Author

Well Gluten Free it is to be. My youngest son has a biopsy scheduled for tomorrow morning (trying to figure out why his Reflux is soooo bad. As for my oldest the GI doc can discharge him from his care, and I think I'll just let his Pediatricians deal with what they can for him. I'll try to keep you all posted but sometimes I can be rather forgetful. Thanks for all the support it is greatly appreciated (you truly don't know how much so)....Steph :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
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    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.