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

Question About Endoscopy For My 8 Year Old Child

pryforma

Recommended Posts

pryforma Newbie
pryforma
Posted

My daughter (she is 8) tested positive for celiac ( blood test) at the time  she was 10 days gluten free, she did test negative one year ago for celiac but her health and growth went downhill from there and the last couple of months got worse so  i decided to cut the gluten and make a doctor appointment as soon as I could.  She started to feel better within a week 

 

as of 2 days ago she was 3 1/2 weeks off gluten ( she had one day couscous) most of her symptoms disappeared the bloat, hard tummy, the irritability, stomach pain , etc...

Well yesterday we got the results and her gi doctor said that to make really sure and to fully give her the diagnosis we should do an endoscopy he said it would be up to me... that for some parents the blood test is enough but to see the full picture it would be a good idea to do the endoscopy, I know people have different opinion on this...

 

so here is the thing

 

 I put her back on gluten she will be on gluten for 10 days before the biopsy (she was only off gluten for 3 1/2 weeks)

He said that as soon she starts to feel all the symptoms again  it's a good sign that we could see something in the biopsy ( I think that is what he meant )  regardless her appointment is in 10 days. 

My question is do you think that will be enough time to see something ? I've read so much already but some say it takes months to heal some say days .I don't want to have a false negative. But I don't want to put her on gluten more that I have to.What do you think?

Thank you for your opinion !

 

 

I called hr doctor's office for a copy in the meantime I asked for the results and she was telling me over the phone but of course my 2 year old started to scream she said something like

 

 igg 44.3

ig 98.7

iga 106

iga 2567 - (maybe these is not right I think that is what I heard) 
 
not even sure if it makes sense the results I should have asked for a copy ...

 

When  i will get the copy and post here :)

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

Celiac.com Sponsor (A8-M):


Christine0125 Contributor
Christine0125
Posted

Is the doctor willing to do a formal diagnosis of celiac without the endoscopy?  If so, then I probably wouldn't bother with it even though it was very easy both for myself and daughter especially since she's already gluten-free and doing so well with it.

 

My 9 year old was recently diagnosed (i was diagnosed about a year ago) and we did do the endoscopy with her but her labs were not nearly as conclusive as it the ones you posted above - I'm not an expert by any means but those look pretty significant.  Her doctor indicated that without the confirming endoscopy she wouldn't have a formal diagnosis which could prevent her from treatments as they become available in the future (her doc is at a hospital with a big celiac research center).  She also felt strongly that we should get a baseline so that if her growth and symptoms didn't improve gluten free we would have it as a comparison point.  Bottom line, we wanted her as a patient in the hospital's celiac center so we moved forward and had it done. 

mushroom Proficient
mushroom
Posted

Hello, and welcome.

 

The first thing you should understand is that there is a difference between beginning to heal, and being healed.  Obviously healing is the goal when one removes gluten from the diet, but that takes a while, longer in some than in others.  In most, however, healing begins right away, and in some a period of three weeks can be enough to change a positive result to a negative.  The blood tests look for antibodies to gliadin, and once the antibodies are no longer required to fight gluten the body stops making them so they can disappear from the blood quite quickly.  The damage in the gut also starts to heal but usually takes a lot longer than the disappearance of the antibodies.  If the damage is minimal it can also heal over quickly enough to not show on biopsy and that is why a gluten challenge is recommended after a period of gluten free.  There is a lot of disagreement as to how long a challenge needs to be.  Most doctors do not think it needs to be longer than a couple of weeks, although the consensus seems to focus on a longer period.  Still, it is up to you to work out with your doctor.  If you are going to make the effort it seems like you would want it to be valid.  Also, make sure that the GI takes at least 6 samples to be sure that he doesn't miss damaged areas.  Early celiac cannot be seen with the naked eye.

 

Regardless, it is possible to have negative blood work and biopsy and still be gluten intolerant, a diagnosis called non-celiac gluten intolerant.  Research into this condition is sketchy so far.

 

Good luck to your and your daughter.

pryforma Newbie
pryforma
Posted
  • Author

Is the doctor willing to do a formal diagnosis of celiac without the endoscopy?  If so, then I probably wouldn't bother with it even though it was very easy both for myself and daughter especially since she's already gluten-free and doing so well with it.

 

My 9 year old was recently diagnosed (i was diagnosed about a year ago) and we did do the endoscopy with her but her labs were not nearly as conclusive as it the ones you posted above - I'm not an expert by any means but those look pretty significant.  Her doctor indicated that without the confirming endoscopy she wouldn't have a formal diagnosis which could prevent her from treatments as they become available in the future (her doc is at a hospital with a big celiac research center).  She also felt strongly that we should get a baseline so that if her growth and symptoms didn't improve gluten free we would have it as a comparison point.  Bottom line, we wanted her as a patient in the hospital's celiac center so we moved forward and had it done. 

Thank you , for your reply , yea he is willing to leave as it is but we would never know everything for sure he too wants to give a formal diagnosis so that is why i want to get it done  . I just worry that 10 days on gluten is not enough although she is only been off for 3 /12 weeks . So far she has not complain about her stomach and she is been eating gluten since yesterday .

Thanks again 

Christine0125 Contributor
Christine0125
Posted

Since celiac is considered a disability, it will also allow her to be covered if she should ever need accomodations in schools and such.  I went ahead and put a 504 plan in place at school so that the communication is there with those that come in contact with her and to make sure accomodations are made so she doesn't have to do any art/science projects involving gluten containing materials and such.  I also wanted her to have unlimited access to the nurse/bathroom, etc as needed.  The school nurse also allowed me to take a stash of gluten free foods/snacks that are kept in the health room should there be an unexpected party or should she leave her lunch at home, or just have an unsettled stomach and need a quick bite... etc. 

 

The good news is my daughter has adjusted to gluten free without complaint.  Oh... and she's gained 3 pounds in the 3 months since going gluten free - YAY!

Archived

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

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


  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748
    Sally Garber
    Newest Member
    Sally Garber
    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

    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
    • Scatterbrain
      Supplements for those Diagnosed with Celiac Disease

      By Scatterbrain · Posted

      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
×
×
  • 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.