Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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

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
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
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
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

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

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
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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748

    wmkoehler
    Newest Member
    wmkoehler
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...