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

  • 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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.