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Why Can't Doctors Agree?

Stephanie7297

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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)
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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

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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

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      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
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      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
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