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

First Visit With Pediatric Gi

ACottrell

Recommended Posts

ACottrell Rookie
ACottrell
Posted

Hi,

I posted last week about my 16-month old who has failure to thrive and came back with a positive celiac panel. The GI doctor, of course, wanted to do the biopsy and we said we weren't interested. He was nice enough, I guess, but when I told him we already put him on the diet and saw results, he kind of shook his head and rolled his eyes. He said we are jumping way ahead and won't ever know if he had celiac without a biopsy. (!)

He did go ahead and send us in for a complete panel to see if Jason has a celiac gene, which is good. Also, he is doing more blood work for other allergies, which I like as well. He said that if Jason doesn't have one of the two genes, then he can't possibly have celiac. Is that true? And if it is, why would he even attempt a biopsy before that if the entire condition can be negated with a little more bloodwork? I suspect he just wants to make a quick buck on a 15-minute procedure, but I'm a bit skeptical of doctors these days.

Oh! And they measured Jason- he is a whole inch taller than he was three weeks ago! DH swore he grew over the weekend since starting the diet and I didn't believe him- is it humanly possible to see that kind of a result that quickly? :huh:

In other news, they ran blood work on me and none of my antibodies were elevated. I was disappointed in a way because I want to know for sure what's wrong with my son! Maybe DH has it? Or is it possible to have the gene and not the disease, only to pass it on to children? Sorry, this is all new to me!

Thanks,

Amy

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

Celiac.com Sponsor (A8-M):


FeedIndy Contributor
FeedIndy
Posted

Well, it would be possible (as with anything) to be a carrier of the gene, but not have it yourself. In that case it is most likely that you and your husband both carry the gene.

As to growth that quickly, I can't even imagine! DD gained 5 oz. in 5 days I thought I was going crazy. The nurse weighed her 3 times because she couldn't believe it either. It's also possible that rather than growing a full inch, he is standing taller now that he has the energy from proper nutrition. DD didn't get up on her hands and knees to crawl at all at 9 months. 2 days after going gluten free she was standing in her crib!

The results are truly amazing, aren't they? So what if you never find out if he truly has celiac. I think you've proved it works! Isn't that all that really matters?

Nic Collaborator
Nic
Posted

My son's ped. GI did the biopsy first and then the gene testing and he is a very good doctor (not out for a buck). He ran the blood first which was positive and then he did the biopsy to confirm the diagnosis. The biopsy results were questionable so he then went for the genetic testing. He said that if Jacob had the Celiac gene(s) then it would only prove that he could possibly have Celiac now or some day. But if he did not have the gene then it would rule it out. I heard from a member here that someone on this board tested positive through blood and biopsy but was negative for the gene. So I don't know for sure, but all the research I have read says that if there is no celiac gene then there is no celiac. I am not sure all labs run the genetic testing or should I say are qualified to run the tests. That may be why they biopsy first, just a guess though.

Nicole

mommida Enthusiast
mommida
Posted

The Celiac gene test through Prometheus Labs has a higher error rate than what doctors first admit. 98% accuracy rate (they know at least 2% will not be detected), any blood test has at least a thirty percent error rate. (from the person drawing the blood, sample storage, and the technitions ability to ran and read the test) There is currently some studies on The parent "carrier gene" that is not detected.

So can the doctor rule out Celiac Disease from a negative gene test? NOPE!

L.

Nic Collaborator
Nic
Posted
The Celiac gene test through Prometheus Labs has a higher error rate than what doctors first admit. 98% accuracy rate (they know at least 2% will not be detected), any blood test has at least a thirty percent error rate. (from the person drawing the blood, sample storage, and the technitions ability to ran and read the test) There is currently some studies on The parent "carrier gene" that is not detected.

So can the doctor rule out Celiac Disease from a negative gene test? NOPE!

L.

So would you say the error runs on the negative side? For example, if you got a negative you might question it? What about a positive? Do you think the Prometheus gene tests that are positive are accurate?

Nicole

ACottrell Rookie
ACottrell
Posted
  • Author
So would you say the error runs on the negative side? For example, if you got a negative you might question it? What about a positive? Do you think the Prometheus gene tests that are positive are accurate?

Nicole

From what I hear from everyone, the only really accurate test is an actual dietary trial! I asked the GI doc if we could just do that and he started waving his hand, shaking his head, like it was a terrible idea. :(

Ursa Major Collaborator
Ursa Major
Posted
From what I hear from everyone, the only really accurate test is an actual dietary trial! I asked the GI doc if we could just do that and he started waving his hand, shaking his head, like it was a terrible idea. :(

Ah yes, doctors like to do that. A dietary test won't make him any money, of course. But it is absolutely true, trying the diet is the most valid test there is. If eliminating gluten makes you feel better, don't eat it. You have nothing to lose by trying it. I did, and I don't regret it. No doctor can stop you, what you eat is none of his business.

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

Celiac.com Sponsor (A8-M):


Kibbie Contributor
Kibbie
Posted

If you want a firm diagnosis where the Dr. says "Your son has ______" sadly most Pediatric GI's are going to require a biopsy. My husband wanted a firm diagnosis so our 18 month old had a biopsy.

After her confirmed diagnosis my grandfather and my husbands grandmother were both diagnosed with Celiac (they got tested because they decided that might be whats wrong with them too)...because of my daughters confirmed diagnosis and their age their Dr's just put them on a Gluten free diet with no biopsy. So my husband and I are carries of at least one gene.

As far as blood work goes..... a positive is about the only thing I trust... I read about false negatives all the time.

FinsUp Rookie
FinsUp
Posted

Our son was 5 when he was diagnosed first with positive bloodwork followed by a positive biopsy. We did not hesitate to have the biopsy. A gluten-free diet is not a temporary fix to celiac; it is a life-long commitment. With a family history of food allergies, we wanted to be absolutely sure that it was celiac before we went gluten-free. We have seen tremendous results in terms of growth since going gluten-free, and we have never once regretted having the biopsy. gluten-free is not like a weight-loss diet that you can follow only when it's convenient or when you are seeing results. You must be diligent at all times. A gluten-free diet also affects the whole family. Many members of this community will attest to the frustrations of dealing with immediate and extended family members who just don't "get" what gluten-free really means. An adult who choses to accept a celiac diagnosis based on dietary change has the right to do so. As a parent, your child relies on you to make these decisions for him or her.

ACottrell Rookie
ACottrell
Posted
  • Author
Our son was 5 when he was diagnosed first with positive bloodwork followed by a positive biopsy. We did not hesitate to have the biopsy. A gluten-free diet is not a temporary fix to celiac; it is a life-long commitment. With a family history of food allergies, we wanted to be absolutely sure that it was celiac before we went gluten-free. We have seen tremendous results in terms of growth since going gluten-free, and we have never once regretted having the biopsy. gluten-free is not like a weight-loss diet that you can follow only when it's convenient or when you are seeing results. You must be diligent at all times. A gluten-free diet also affects the whole family. Many members of this community will attest to the frustrations of dealing with immediate and extended family members who just don't "get" what gluten-free really means. An adult who choses to accept a celiac diagnosis based on dietary change has the right to do so. As a parent, your child relies on you to make these decisions for him or her.

We didn't flippantly decide to start a gluten-free diet. It was with much consideration that we decided against the biopsy and, from the ladies on this board, I see we aren't the only ones. Don't forget, there is a big difference between a 5-year old and a tiny 1-year old with failure to thrive. We feel it is simply too invasive and risky. A full allergy panel is being run on him, as well, just to make sure we aren't missing any other problems.

FeedIndy Contributor
FeedIndy
Posted

That was pretty much our decision. We, in fact, started the gluten free diet even before her bloodwork came back. We did the research, discovered the testing wasn't reliable for children her age anyway, and decided against waiting because we wouldn't have consented to the biopsy anyway. I just felt it was too invasive for a tiny, underweight 1-year-old when a gluten free diet could be a fairly simple thing to try. It worked within days, literally! She had more energy and better diapers even before the doc called with her negative results. When I told him what we did and what we were seeing he ordered allergy testing. He saw her again at day 5 and found she had gained 5 ounces! She had her allergy testing a couple months later, after gaining 2.5 lbs in 2 months. It all came back negative, which led the docs right back to celiac. I was told I'd have to put her back on gluten for a few months and then do a biopsy for a confirmed diagnosis. They also said they wouldn't do that for a couple more years-better to let her catch up on weight for now. It's working, does it really matter why?

ACottrell Rookie
ACottrell
Posted
  • Author
That was pretty much our decision. We, in fact, started the gluten free diet even before her bloodwork came back. We did the research, discovered the testing wasn't reliable for children her age anyway, and decided against waiting because we wouldn't have consented to the biopsy anyway. I just felt it was too invasive for a tiny, underweight 1-year-old when a gluten free diet could be a fairly simple thing to try. It worked within days, literally! She had more energy and better diapers even before the doc called with her negative results. When I told him what we did and what we were seeing he ordered allergy testing. He saw her again at day 5 and found she had gained 5 ounces! She had her allergy testing a couple months later, after gaining 2.5 lbs in 2 months. It all came back negative, which led the docs right back to celiac. I was told I'd have to put her back on gluten for a few months and then do a biopsy for a confirmed diagnosis. They also said they wouldn't do that for a couple more years-better to let her catch up on weight for now. It's working, does it really matter why?

I completely agree and have seen the same quick results. Better diapers, weight gain, and he is already outgrowing his pants! Why question what is clearly working? It's not like we're getting tunnel vision here, either. If the allergy panel discovers other things, then we will address that as well. It's just so good that he is growing finally, do we really need the "official" diagnosis?

Archived

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

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


  • Member Statistics

    • Total Members
      131,544
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.