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4 Year Old Possible Celiac

AngelGarza

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AngelGarza Newbie
AngelGarza
Posted

My four year old has been suffering from chronic constipation, abdominal pain, enormous bowel movements, and extreme irritability for over 2 years. Her doctor could care less. Last week her grandmother and Aunt were both diagnosed with celiac disease and they suggested I try going gluten free. After 3 days my caught has had two NORMAL bm's and is like a completely different child. I just called her dr to see about getting a blood test and she refuses to do it, so I'm switching to a new dr and it takes about a month for my insurance to make the change. Should I continue the gluten-free diet while I wait to have her seen? And should my other kids be tested? My 2 year old is extremely tiny for her age so I'm worried about her as well. I have soooo many questions so I thank u all in advance for your help!

Angel

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alex11602 Collaborator
alex11602
Posted

For accurate testing you need to be consuming gluten and even then it is possible for a negative result. Also since you have family members who were diagnosed I would say for you and all your children to get tested.

Another thing is that since your daughter had positive results on the diet already after all testing is exhausted you may want to put her on a gluten free diet regardless of the test results.

Good luck with testing since it is my understanding that having positive test results can be beneficial when it comes to school and such. We don't have that problem since when I found out about celiac we decided to homeschool our children, but if you look through the parent of kids or babies section of the forum you may get a better idea of what testing involves and everything.

Good luck again.

AngelGarza Newbie
AngelGarza
Posted
  • Author

For accurate testing you need to be consuming gluten and even then it is possible for a negative result. Also since you have family members who were diagnosed I would say for you and all your children to get tested.

Another thing is that since your daughter had positive results on the diet already after all testing is exhausted you may want to put her on a gluten free diet regardless of the test results.

Good luck with testing since it is my understanding that having positive test results can be beneficial when it comes to school and such. We don't have that problem since when I found out about celiac we decided to homeschool our children, but if you look through the parent of kids or babies section of the forum you may get a better idea of what testing involves and everything.

Good luck again.

I was afraid she would have to go back on gluten. :( Atleast we will know for sure what's going on.

M0Mto3 Rookie
M0Mto3
Posted

Although it is tough to keep her on gluten, it is better to do it now. My little one is at the point that she may never get diagnosed. After a 2 month gluten challenge (which she did not tolerate) she still had negative bloodwork. Now, she is gluten free and healthy. I know that I would never put her back on it. She got a speck of gluten in her almond milk on Friday (carnation instant breakfast) and she isn't fully recovered, yet. Now I have to seek out a GI doc that might diagnose her without the bloodwork and endoscopy. She is still very young (17 months) so we have several years before we have to worry about needing the diagnosis for school.

AngelGarza Newbie
AngelGarza
Posted
  • Author

Although it is tough to keep her on gluten, it is better to do it now. My little one is at the point that she may never get diagnosed. After a 2 month gluten challenge (which she did not tolerate) she still had negative bloodwork. Now, she is gluten free and healthy. I know that I would never put her back on it. She got a speck of gluten in her almond milk on Friday (carnation instant breakfast) and she isn't fully recovered, yet. Now I have to seek out a GI doc that might diagnose her without the bloodwork and endoscopy. She is still very young (17 months) so we have several years before we have to worry about needing the diagnosis for school.

She is already having problems after one day of being back on gluten. I found a nurse practitioner who specializes in gastroenterology. She wants her back on gluten for a month and we'll go from there. We only have until august to get this diagnosed before she starts school. But I plan to use this month to eat up all of her favorite gluten filled crap. The poor girl is obsessed with Taco Bell :(

AngelGarza Newbie
AngelGarza
Posted
  • Author

Oh, another question....The family members who were recently diagnosed are my husbands fam. But the more I read the more this disease sounds like my childhood. I was constantly at the dr for stomach aches, I vomited all the time, was extremely skinny with a distended belly (my cousins all used to call me the ethiopian kid), and always ended up in the er on thanksgiving. My drs all attributed my issues to being anemic, then as I got older they saud I was bulemic. My father has always had stomach issues as well. He has had bleeding ulcers a bunch of times. Abd his mother had 7 siblings who all died in their 40's and 50's from stomach cancer. Should I get tested as well?

alex11602 Collaborator
alex11602
Posted

I definitely would if I was you. I certainly couldn't hurt anything.

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eluvsphish Newbie
eluvsphish
Posted

My doctor is also not understanding. I'm skipping a new pediatrician and going right to a gastro for my son. In the meantime, I just sent away for genetic testing through Enterolab. It was almost $200, but worth the peace of mind. The way I feel is that if he is carrying a gene, then he is going to have the disorder. (And since I just found out that I carry 2 genes too, then he will have at least one. But doctors respect you more when you have genetic proof too!)

But yes, I agree with others on this forum, keep the gluten for now so that you can have the blood test. But, don't give up if it's negative. My son's was negative and I don't believe it at all. He has been waaaaaay too much better since going gluten-free.

maramelia Newbie
maramelia
Posted

My doctor is also not understanding. I'm skipping a new pediatrician and going right to a gastro for my son. In the meantime, I just sent away for genetic testing through Enterolab. It was almost $200, but worth the peace of mind. The way I feel is that if he is carrying a gene, then he is going to have the disorder. (And since I just found out that I carry 2 genes too, then he will have at least one. But doctors respect you more when you have genetic proof too!)

But yes, I agree with others on this forum, keep the gluten for now so that you can have the blood test. But, don't give up if it's negative. My son's was negative and I don't believe it at all. He has been waaaaaay too much better since going gluten-free.

people, the genetic test is not everything like many and literature always says... sometimes it is negative, and the person do not have celiac disease, but some type of intolerance, sensibility, or whatever you want to call this thing...

my son example: short stature, few GI symptoms, always very small for his age, now 6yrs, wears 4T-5T clothes, and he has a negative EMA / a mild positive TTG and Marsh I = positive biopsy, and his HLA tests were surprisely negative !!! and he is improving (at least with GI symptoms...). my husband is 36yrs, always with an IBS diagnosis, and after we started the GDF because of our oldest boy (the 6yrs one), he dramaticaly improved of his diarhea symptoms... and before entering in GFD my husband did the blood exams, --- all negative!!!!! he didnt do the biopsy, and now, after eating no gluten, he told me: "i dont want to go back to that life!!!"

last saturday, we went to a japanese restaurant, and he ate (by mistake, he forgot this) a shimeji with probable gluten-shoyo... wow!!!! green diarrhea back! incredible, he was free of it after 3 weeks of gluten free diet... just because some small amounts of shoyo in a shimeji plate --- it was inclredible...

I say to you, its better mantain gluten diet for all that are possible to be celiacs, at least until the biopsy... because after staying with gluten free diet, then to come back to gluten is too bad, and you all will, never have an official diagnosis... unless you promise you will go back do gluten... (after get out of it, if you improve, its hard, very hard..., specially to our children...).

finally, i resume: keep on gluten diet, hurry to docs, do the blood exams and biopsies quickly, and then go definitively to GFD...

"when you taste caviar, its hard to go back to the daily common "butter"...:)))

good luck for all.

TBelle Newbie
TBelle
Posted

Just a note about the family question. My 3 children have been diagnosed with celiac disease so my husband and I both got gene tested to find out what side of the family it comes from (I have been told it's very unusual for 3 of my children to have celiac disease and the only one who doesnt yet is an ID twin so she has the gene) I just got the results back and my husband and I both have the same celiac disease gene so it could come from both sides of the family. It would be wise to get everyone in the family tested. Good Luck with it all

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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    • SilkieFairy
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