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Toddler With Possible Cd? Help?

VydorScope

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VydorScope Proficient
VydorScope
Posted
  • Author

Plan to call my doc on monday. If my insurance has not dropped me yet for all the procedures and tests I have had then this little celiac disease test should not phase them. celiac disease is prbly a better lable then what I have now. I can eat pizza and pasta for a few days if I can get a test date a blow out feast LOL

If there was a free or cheap way to get it done privatly I would, but not found any so I need insurance to foot the bill. :(

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Merika Contributor
Merika
Posted

Good for you! Let us know how it goes.

Btw, i am so impressed that you found this board so soon and are pursuing the diet so well for your ds, and open to looking at yourself and other family members. I have celiac, as does my mother, as did her mother (we're 99.9% sure, but no tests were ever run on her). My own son, age 3, has been gluten-free since i was diagnosed and we will have to gluten challenge him to have the test run (circumstances were such that we would not have been able to get a reliable test when he was 20 mos and I was diagnosed).

Merika

VydorScope Proficient
VydorScope
Posted
  • Author

Welp the gluten-free diet is working great for my Toddler. Just look at that face:

Open Original Shared Link

(that is a gluten-free cookie I found in the store, comes in a blue box... forget name, but darn good!)

Still not head back on his biospy, but it real does not matter to me at this point. The gluten-free diet has solved all of our major medical issues with him, so I guess it realy does not matter if he tested postive/negative, we are going to keep him on gluten-free.

I leave in about an hour to talk to my doc about getting tested myself. This could be my very last bowl of berry burst cheerios...ever. :( Now that I am some-what educated on this stuff I am fiarly confident that Tim got his celiac disease from me, and I got it from my grandfather. My "unexplainable" iron-defficent anemia may be a thing of the past in 6 mounts time... that would be realy cool. :D

My Mom sent us a bread machine, so I will not have to give up breads, just need to expirement with some recipes... and esply find a good piza crust. I refuse to live with out pizza. When I did the Atkins diet I created a low carb crust, to bad it uses "vital wheat gluton", back to the drawing board!

Guest nini
Guest nini
Posted

what a cutie! so glad it's working for him and he can still enjoy cookies!

There are many many many ways to still enjoy pizza, just get creative!

Guest Lucy
Guest Lucy
Posted

My son's biopsy looked normal. We were so excited that he didn't have celiac. (his was caught at a routine screening at a diabetes appointment). The GI specialist said he could see nothing abnormal. HE still sent it to the lab for testing. It was positive. We were devastated. He was diagnosed at 28 months. He had no symptoms, except multiple bowel movements a day that were not formed. I didn't think it was that unusual.

We were lucky that our endocronologist screens all children with type 1 diabetes for celiac. If he hadn't we would have gone years without diagnosis, as he had no symptoms, and anything he did have, we would have attributed to diabetes.

I would do gluten free for at least 6 months, and then maybe introduce gluten again and see if his symptoms return. Then you will know for sure. Good Luck.

VydorScope Proficient
VydorScope
Posted
  • Author

Ugh.. the doc took my blood, but then said I need to see a GI doctor for futher inof/test/etc. The blood test will take a week, and the apt with the GI doc is not till the 23rd.. I wonder if I should go gluten-free or not???

mommida Enthusiast
mommida
Posted

Vincent ,

What a cutie you have there!

The tests for Celiac are measuring the amount of damage is happening to your body when you ingest gluten. You most eat the gluten for the damage to show up. Get the testing done then start the gluten-free diet.

Laura

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Merika Contributor
Merika
Posted

Hi Vincent,

If your doctor did the full celiac blood panel (about 5 things, ttg, iga...) you can go gluten-free if you want. If you intend to have the biopsy if it comes back positive, wait for that test before you go gluten-free. Many people choose not to do the biopsy, as the blood tests today are so accurate it's really not necessary.

As far as waiting until the appointment and the results, there's really no need I can think of. Going gluten-free now is irrelevant if you test negative, and if your results are positive, you'll start feeling better that much sooner.

Hope that makes sense,

Merika

VydorScope Proficient
VydorScope
Posted
  • Author
Hi Vincent,

If your doctor did the full celiac blood panel (about 5 things, ttg, iga...) you can go gluten-free if you want. If you intend to have the biopsy if it comes back positive, wait for that test before you go gluten-free. Many people choose not to do the biopsy, as the blood tests today are so accurate it's really not necessary.

As far as waiting until the appointment and the results, there's really no need I can think of. Going gluten-free now is irrelevant if you test negative, and if your results are positive, you'll start feeling better that much sooner.

Hope that makes sense,

Merika

Unfortunitly its not clear what or how many celiac disease test they did. They took 2 test tubes full I know that much. The doctor was familure with the process BUT the ppl, that take the blood and send to the labs, etc were not. The doc spent about 10 or 15 mins explaining it to them before I was sent to them and they still called her to ask questions once I was there. Not sure whats so hard about it? Ah well at least they send it to a lab , maybe they have a clue. :)

key Contributor
key
Posted

Hi Tamara

I didn't see your post before.

Yeah, I have had three kids in the past six years too. I am SO tired of doctors myself. I don't even have a doctor other then my OB/GYN. He is great, but I don't think he would test for celiac disease. I do need to be tested though. I have been miserable all the time. I don't gain weight either, plus was anemic pregnant and high school, etc. Many celiac disease symptoms. Before I found out about celiac disease I was having these symptoms. Of course my husband wants me to be tested. Anyway, my first son had something called Sagittal craniosynostosis. HIs suture in his skull was closed and he required two surgeries. Mainly for cosmetic reasons, but it was all very traumatizing to me! Very scarey. Anyway, he is awesome now, but I am wondering if he has celiac disease too. He at some point went through over a year of very bloated belly, explosive BM's and didn't eat well. He is small for his age. IN the tenth percentile. Otherwise now he seems fairly healthy all the time. He is very active, etc, but is smaller then almost every kid he meets his age. My second son is fine and was big as a baby. My third, the one that seems to have celiac disease, also has something called Neurofibromatosis1, probably that is. He needs another symptom to be diagnosed with it. Right now he just has the birthmarks. So of course we are wondering what is up with our genetic make up. My husband is a Radiology resident in his last year and I am an RN and used to work NICU. It is amazing what you don't know until it happens to you. I think I know way too much about all three of these birth defects and diseases!!! Ha! I wish there was some sort of screening for Celiac though. Especially before women get pregnant.

I have been on the diet for two days and it has helped me already to feel better. DOes anyone know if I have to be on gluten for the blood tests to be accurate. I won't be able to get tested for another week and a half.

Thanks,

MOnica

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