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Celiac In 5 Year Old?

Quaylern

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Quaylern Rookie
Quaylern
Posted

I took my daughter in to have the saliva test for gluten sensitivity and celiac after my test came back positive for gluten sensitivity. We did the Cyrex lava Array 1

Her results came back

Secretory IgA 5.02

Gliadin IgA+IgM > 3.40

Transglutaminase IgA+IgM >3.10

The doctor said these are some of the highest test results that he's seen. He called the lab to verify that they were correct. He said it's most likely autoimmune and to follow up with a gastroenterologist. I have a call into one to schedule and appointment.

I'm having a hard time getting my ex husband on board with this. He doesn't trust the test and won't go with me to any appointment. Do these tests come back false negetive? I doubt it's false. I have gluten sensitivity and haven't tested further for celiac but I have removed gluten from my diet and feel much better. I feel her gluten free at home and her school is fine with the change, it's just her dad that will be the struggle.

Any suggestions or advice is great! I'd rather avoid an endoscopy but I'm wondering if it will be better to have for her medical records.

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mamaw Community Regular
mamaw
Posted

so  her tests  came  back  high even though  she  was not  eating  gluten????  If  she is  already off  gluten  a  scope  may  NOT be  of  any help  for  a confirmation....You could  do DNA  testing  but again  that  does  not  give  confirmation of  celiac  either...

Quaylern Rookie
Quaylern
Posted
  • Author

No, she is not eating gluten at my house but has been at school and her dad's so it is still in her system.

mamaw Community Regular
mamaw
Posted

okay  wasn't  sure about  that....As  bad  as  a  scope  sounds   its  really not  that  bad... Our  kid  had  one  done at  age 2 1/2..... can't  help  with  an  ex-husband!!!  Could  it  be  he  is  pushing  your  buttons  ? You  must  do   right  by  your  daughter &  her  health  is  what  is  important  here not  his  feelings.... so   you  may  have  to over ride  him...  Could  the  doctor  speak to  him?

ex husbands  &  wives  at  times  love  to punish  the  other  in  the  name  of  their  beloved  children,,, kids  are  great  bargaining  tools.... And  that  statement  is just  WRONG>>>>> protect  your  child.......He  probably  would  not  believe  a  scope   result  either... GIve  him  his  choices, scope? no  scope? Use  the  test  she  already  had  taken  & be  gluten-free?  If  not  the  courts can intervene ....

Quaylern Rookie
Quaylern
Posted
  • Author

Thank you for your response. I heard more back from her father and he refuses to removed gluten from her diet until she has a clear dx. He refuses to go with me to the doctor and I said it would be better of he would participate in her health care and he would be able to ask questions as he sees fit. But anyway, I'm going to go ahead with the endoscopy. I have an appointment with her normal doctor Monday to see if either he will order the test or if he will refer us to a GI doc. Our tests were done but a chiropractor/ functional medicine specialist and he would need to refer us to a GI doc anyway. I'm just worried the endoscopy will come back negative then we'll be at a stale mate.

mommida Enthusiast
mommida
Posted

Keep her on GLUTEN.  There has to be damage from eating gluten to diagnose Celiac with the endoscopy.

 

It sounds like you need the "gold standard" diagnoses for your ex-husband.

mamaw Community Regular
mamaw
Posted

if  the  test  comes  back negative  she  still  could  have  NGCS....And  at  present t here  is  no test  for  that  except the  elimination  diet....I  would  also  get all  the info  I  could  find  &  shove  it in  his  face  & tell him  to  learn & read....I  think  he  is  just  not  wanting   to  realize  she  may  have  a  problem... Is there anyone  who  can get  through to him? The  child  will suffer in the  long  run......he needs  to  think  about  the  long  road  of her  health now  &  her  future  health. Would  he  really  want her  years  down the  road  to  have  cancer,  thyroid  removed & so on?  There  are 300  issues  that  tag  along  with  celiac.....

If  he  refuses  to accept  any of  this  then you hand  may be  forced  to  go  through the  courts with medical advice stating  she  needs  to be  gluten-free....

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Quaylern Rookie
Quaylern
Posted
  • Author

He is the type that thinks he knows better than anyone else and thinks that I am overreacting. To make matters worse, his girlfriend is a nurse so she should know better! Anyway, if the endoscopy comes back negative, I will see if they will dx her NCGS which is what I'm at myself. I opted not to do further testing on myself for celiac but I guess that won't work with my daughter. Her results were much higher than mine as well. My Transglutaminase levels were negative where hers are off the charts! I'll keep her on gluten as much as it pains me while we go through more testing.

mamaw Community Regular
mamaw
Posted

good  luck...   just  remember all this  tip toeing around  your  ex  is  about  your  daughter.. ANd  I know  many many nurses  who  get  dx'd  with  celiac  & have  no clue... so I'll have  to  disagree  with you on that one...heck  much  of the medical profession  have no idea  about celiac & even less  about NCGS.....

You just  take  care  of  your  most  valuable   procession --- your  daughter....

Quaylern Rookie
Quaylern
Posted
  • Author

I'm not sure what you would disagree with me in regards to the nurse. My point was that I would hope she would be able to look at the information on celiac and realize it is a serious issue and not claim that it is an "everything in moderation" deal.

africanqueen99 Contributor
africanqueen99
Posted

See the GI first and then figure out your ex. Two of my kids were DX without scopes (one didn't get one based on age, the other was negative, but clearly celiac). It is possible to go on blood alone - so the GI may require more tests.

GF Lover Rising Star
GF Lover
Posted

I took my daughter in to have the saliva test for gluten sensitivity and celiac after my test came back positive for gluten sensitivity. We did the Cyrex lava Array 1

Her results came back

Secretory IgA 5.02

Gliadin IgA+IgM > 3.40

Transglutaminase IgA+IgM >3.10

The doctor said these are some of the highest test results that he's seen. He called the lab to verify that they were correct. He said it's most likely autoimmune and to follow up with a gastroenterologist. I have a call into one to schedule and appointment.

I'm having a hard time getting my ex husband on board with this. He doesn't trust the test and won't go with me to any appointment. Do these tests come back false negetive? I doubt it's false. I have gluten sensitivity and haven't tested further for celiac but I have removed gluten from my diet and feel much better. I feel her gluten free at home and her school is fine with the change, it's just her dad that will be the struggle.

Any suggestions or advice is great! I'd rather avoid an endoscopy but I'm wondering if it will be better to have for her medical records.

 

I just want to point out to you that there is currently no accepted saliva test for Celiac Disease or any accepted testing for Gluten Sensitivity.  This is most likely why your Ex is having trouble with what your doing.  The proper place to start is with your daughters pediatrition with the blood tests for Celiac Disease followed up by an endoscopy.  She will need to keep eating gluten for 8 to 12 weeks for the testing to be accurate.  I'm just curious, does your daughter have symptoms?

 

Colleen

Quaylern Rookie
Quaylern
Posted
  • Author

I just want to point out to you that there is currently no accepted saliva test for Celiac Disease or any accepted testing for Gluten Sensitivity. This is most likely why your Ex is having trouble with what your doing. The proper place to start is with your daughters pediatrition with the blood tests for Celiac Disease followed up by an endoscopy. She will need to keep eating gluten for 8 to 12 weeks for the testing to be accurate. I'm just curious, does your daughter have symptoms?

Colleen

I don't think my ex knows enough about it to know which tests are acceptable but he does know about the endoscopy because I mentioned it to him.

My daughter's symptoms are stomach aches, constipation, eczema and a little bit of behavioral issues. I mostly wanted her tested because my test was positive.

mamaw Community Regular
mamaw
Posted

You  stated  his girlfriend was  a nurse  & should  know  better..... My  disagree  was  that  the  medical  profession  has  come a distance  but  most  still are  in the  dark about  celiac or NCGS.... most  never  learned  about  celiac  in  med  school or  nursing  school... I know  hundreds  of  nurse's  & most  knew little or  nothing about  celiac  until they were  dx'd...

Honestly, I  think we  the  celiac  world  know  more  about our  disease  than  most of the medical  profession unless  they  specialize  in   celiac... even  if  they  dx  there  is a lot  to learn  &  they  don't  give  help  after a dx.. Most  are on their own to figure  out  how to survive.... If  one is lucky  enough to  find  a  dietician  who also has  celiac  then  it  will help  but  I hear  most  dieticians  are  little help  unless they have  celiac....

After a  dx's  people just  want to know  how  they  can live  &  enjoy life  again.. we are  a  society  obsessed  with  enjoying  company  but  usually always  food  is  involved....

Quaylern Rookie
Quaylern
Posted
  • Author

I have another question. I would prefer that we go straight to an endoscopy if the doctor is ok with that. All these tests are costly and I would rather avoid blood tests if the endoscopy is where we will end up. Is there any reason why skipping blood tests would be a bad idea? I know if the endoscopy comes back negative we may need to back track and do the blood tests anyway.

mamaw Community Regular
mamaw
Posted

I  don't  know  your doctor but  usually they do blood  tests  first  then  go for the scope...  I  guess  it  would be up to the  doctor.  blood  tests  are less  invasive....

Quaylern Rookie
Quaylern
Posted
  • Author

I understand that the blood tests are less invasive but we already have a positive saliva test and my daughter is terrified of having her blood drawn. If the end result will be getting an ednoscopy, I would rather do that than to put her through the trama of both.

africanqueen99 Contributor
africanqueen99
Posted

As I said before, I have two kids DX without being scoped - it's not the golden standard anymore, but blood tests are used by all the mainstream medical community. I think it would be a challenge getting a true diagnosis without blood.

I realize you would like to avoid the trauma of blood work, but that doesn't have the same potential of complications as being under anesthesia for an endoscopy. In fact, I, personally, would take great caution with any physician that jumps over simple blood tests to send my kid to the hospital.

Quaylern Rookie
Quaylern
Posted
  • Author

Thank you! That's what I was wondering. I know even the endoscopy can give false negatives. I'm concerned because her normal doctor said he runs the test for people all the time and my test was the first he's seen come back positive (he's family practice and I went to a functional medicine doc for my test) so I wonder if he's running the right tests. Maybe I should just ask for a referral to a gastroenterologist and go from there.

As I said before, I have two kids DX without being scoped - it's not the golden standard anymore, but blood tests are used by all the mainstream medical community. I think it would be a challenge getting a true diagnosis without blood.

I realize you would like to avoid the trauma of blood work, but that doesn't have the same potential of complications as being under anesthesia for an endoscopy. In fact, I, personally, would take great caution with any physician that jumps over simple blood tests to send my kid to the hospital.

Quaylern Rookie
Quaylern
Posted
  • Author

I just wanted to update after out appt with Izzy's normal doctor. He knows next to nothing about Celiac. He wanted to have his see an allergist. I asked him if that is really who we should go see. Then he decided to give us a referral to a pediatric gastroenterologist at OHSU. So at least I know we'll be in good hands with people that actually know what they are doing. I feel much better.

mamaw Community Regular
mamaw
Posted

children's  hospital in  Columbus  Ohio  has a  great  celiac   program....

Quaylern Rookie
Quaylern
Posted
  • Author

children's hospital in Columbus Ohio has a great celiac program....

Thank you, unfortunately we're in Oregon so we'll be going to the children's hospital at Oregon Health Science University. I am hoping they are good. I would imagine so. It will be nice to be in knowledgable hands.

mamaw Community Regular
mamaw
Posted

sorry  I  misread...  I  guess  I  seen  OH  &  my brain  went  to  Ohio....silly Celiac  brain......  !!!!!!!!!!!!

Quaylern Rookie
Quaylern
Posted
  • Author

sorry I misread... I guess I seen OH & my brain went to Ohio....silly Celiac brain...... !!!!!!!!!!!!

I would have done the same thing. Ha! I was wondering if I should have clarified which state we were in :)
mamaw Community Regular
mamaw
Posted

I  wish  everyone  on here  would list  their  state or  the  closest  largest  city  to them... It  would  help us  better  help them.... esp.  when  someone  asks about  finding a good  support  group, doctor  or  gluten-free  restaurant...or  where  to  gluten-free  shop.....This  site  has  great  information  but  its  useless  when  we  give  them  info  for  places  that  are  not in their  area.....

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