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Question About Endoscopy For My 8 Year Old Child

pryforma

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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 :)

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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!

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      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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