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Was An Endoscopy Required For A Dx?

mommaof4

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mommaof4 Newbie
mommaof4
Posted

My almost 4 year old daughter has had constipation issue since she was an infant. She also is very tiny 37" & 27 lbs. It has been a battle to get anyone to take me seriously when I said it is more then a withholding issue. I finally got them to run some test including a celiac screen, it was negative. I wasn't told at the time that the test are not so great in kids. They then did some IG testing & one came back abnormal but not terribly so, it is an IG marker that is seen in celiac patients. Again they just kind of went along with the it is behavioral saying it wasn't off enough to be a concern plus she was neg for celiac. This past summer we moved, I found a new GI dr. He seemed to think celiac was a real possibility. Again her screen was neg but he also did genetic testing. She came back at a high risk genetically for celiac. I believe he said she was 33% more likely then the average person. He says the only way to get a true dx is with an endoscopy. Do I really need to put her through that, given her history & genetics?

Thanks for any input

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Rondar2001 Apprentice
Rondar2001
Posted

Hi Momma, welcome to the forum. With regards to the endoscopy you will find some answers are pro and some are against. You will need to make your own decision with what is best for your family.

We did decide to go for the endoscopy for a firm diagnosis. When my daughter gets older, she will not be able to question whether she really has it or not, and hopefully this may keep her from cheating. Also, in Canada, there are tax implications when you have this diagnosis.

Her endoscopy was fairly quick and painless. She was at the hospital at 7:30 and home by noon. They let us stay with her until they took her into the main operating room and they didn't put in an IV until she was asleep. She had no pain and was back to normal that afternoon. The children's hospital here also gave us a tour and orientation a week before she when in. Although there are some slight risks, only you can decide if they are worth not doing the procedure.

Another consideration may be that your daughter's blood results are not definitively positive. Just because she has the genes doesn't mean that she will definitely develop the disease. The diet, while it gets easier everyday, is still somewhat restrictive and I personally would want to be sure before embarking on it.

You could try the diet to see if it helps, but realize if you ever want a firm diagnosis, you will have to put her back on gluten which could be quite difficult for her.

Good luck with your decision!

The Kids Folks Apprentice
The Kids Folks
Posted

Hi-

Its quite a tough decision to make - to endoscopy or not. We chose not for our 7 yo son who also had major chronic constipation issues since he was an infant. Our peds did the blood test - which was negative. He was then sent to a peds GI who said that he was just fine and that we should put him on medications to treat the symptoms. Our peds slightly disagreed with the pedsGI and added more medication, on a daily and weekly basis DS was taking the following... miralax, benefiber, mineral oil, pedialax, a probiotic, and on an as needed basis, suppositories and enemas. Being on all of that ended DS in the ER because of the straining that he was doing to go, caused him to have severe swelling in his boy region. At that point - the mamma bear in me came out and we decided as a family that we were going Gluten Free with out the medical "experts" knowing what was right for our son. Within a few days we were able to eliminate ALL medications. DS became "regular"!

My husband and I agree that if we didn't see results from the change in diet, then something else was going on and we would then go back on gluten and proceed with the endoscopy. We are now almost 8 months gluten free. DS no longer has the chronic C, gas and bloating and is able to sleep through the night. He has gained in size 2 inches in height and has gone up a size in clothes from 5 slim to 6 regular. He has gone from below the 3rd percentile in height to a strong 5th!!

We have also switched peds! This one is more interested in making sure that our kids are healthly through food rather than masking the symptoms with medications.

Good luck to you on this journey - all though life changing its a positive road to take!! :)

lizajane Rookie
lizajane
Posted

my sons also tested negative when we did the blood test several years ago. he is 4. he did not sleep all night, he was very irritable, his tummy stuck straight out and he had a lot of gas. within 3 days of going gluten free, he slept all night, stayed pleasant all day and was just generally more full of joy. i did not want to put him through an endoscopy when i knew i could see if the diet made him feel/act differently and avoid the hassle, potential harm and cost of an endoscopy. my GI encouraged me to get it done, but i let him know that seeing the changes SO quickly with the diet were enough for me. he can always look further into a definite diagnosis when he is old enough to make that decision for himself. and we may do the genetic testing, too, as my test results were not conclusive from the biopsy- my diagnosis was a combo of the biopsy and the effect of the diet.

mommaof4 Newbie
mommaof4
Posted
  • Author

Thank You for the responses. For those that chose not to do the endoscopy how do you handle school? My fear is that without a clear dx that the school will not take it as serious. We did go gluten-free for a couple of weeks. She seemed after a couple of days to be feeling better. Then she got into bread & within 20 minutes was laying on the couch whining & saying her tummy hurt. She also has unexplained anemia(not iron def) all other bloodwork is good. gluten-free is very difficult with 3 other kids in the house! Thank again

Amy

JennyC Enthusiast
JennyC
Posted
Thank You for the responses. For those that chose not to do the endoscopy how do you handle school? My fear is that without a clear dx that the school will not take it as serious. We did go gluten-free for a couple of weeks. She seemed after a couple of days to be feeling better. Then she got into bread & within 20 minutes was laying on the couch whining & saying her tummy hurt. She also has unexplained anemia(not iron def) all other bloodwork is good. gluten-free is very difficult with 3 other kids in the house! Thank again

Amy

We are going to handle school just like anyone would who had the biopsy. My son is diagnosed with celiac, but we chose not to biopsy. No one ever questions his diagnosis. As long as you have a doctor on board with you to write a note or a 504 plan, you should have no problems.

jmjsmomma Apprentice
jmjsmomma
Posted

Our son's dx came out of the blue. His bloodwork came back "off the charts" positive. We chose to do the biopsy based on his bloodwork, we wanted a clear understanding of what damage had been done to his intestines. It was the right decision for our family as other than failure to grow he was asymptomatic. It is a very personal family choice with no right or wrong answer....good luck on your journey and your decision making!

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