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What If My Doctor Said We Had Celiac With Only This Info...

katifer

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katifer Apprentice
katifer
Posted

i need some advice

I changed doctors and asked if he would test my child and i for Celiac--he said the best test was a genetic test...and both of ours came back with the HQ-2...(if i am saying that correctly?) anyways, i asked because i have been told nothing helpful since i was 10years old...and i am 27---my child was 11 months at the time and had stopped saying words he had learned, was not eating anything but nursing, stopped gaining weight for 3 months, never smiled, threw up often. i had already tried going gluten free but was having a hard time sticking to it with out some type of diagnoses... i have had horrible chronic joint pain since i was 10, my skin hurt, canker sores, im very small, stomach aches, horrible brain fog , awful depression...my list goes on...but i am really struggling because taking gluten out of our diet/ out of our house helped the baby within a week(which is great!) --and he and i have only continued to feel better--------------but for his sake i am nervous because my doctor obviously didn't do enough tests looking through and reading other peoples experiences... my symptoms are almost gone...i will never have gluten again..i guess i just feel weird for my son because we just did some allergy tests and the gluten etc came back undetectable(so its great that we are doing a good job keeping it out of his diet) but i cant imagine putting him back on gluten to make sure this is really celiac..what do ya'll think???p.s. my 3 year old had horrible allergies eggs, peanuts, gluten but is HQ-1..

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Aleshia Contributor
Aleshia
Posted
i need some advice

I changed doctors and asked if he would test my child and i for Celiac--he said the best test was a genetic test...and both of ours came back with the HQ-2...(if i am saying that correctly?) anyways, i asked because i have been told nothing helpful since i was 10years old...and i am 27---my child was 11 months at the time and had stopped saying words he had learned, was not eating anything but nursing, stopped gaining weight for 3 months, never smiled, threw up often. i had already tried going gluten free but was having a hard time sticking to it with out some type of diagnoses... i have had horrible chronic joint pain since i was 10, my skin hurt, canker sores, im very small, stomach aches, horrible brain fog , awful depression...my list goes on...but i am really struggling because taking gluten out of our diet/ out of our house helped the baby within a week(which is great!) --and he and i have only continued to feel better--------------but for his sake i am nervous because my doctor obviously didn't do enough tests looking through and reading other peoples experiences... my symptoms are almost gone...i will never have gluten again..i guess i just feel weird for my son because we just did some allergy tests and the gluten etc came back undetectable(so its great that we are doing a good job keeping it out of his diet) but i cant imagine putting him back on gluten to make sure this is really celiac..what do ya'll think???p.s. my 3 year old had horrible allergies eggs, peanuts, gluten but is HQ-1..

I may be wrong about this and I myself have not been diagnosed yet but I believe that it won't show up in an allergy test because it is an intolerance not an allergy. if he is doing better then I would stick to that because there is no harm in not having gluten. it is probably actually a better way of eating anyway. it is just not as convenient... :) if he does better on the diet and you can see a noticable difference and he has the gene that makes him succeptable to it then I would just feed him gluten free and trust that it is the right thing

dbmamaz Explorer
dbmamaz
Posted

I think you shoudl thank your lucky stars you found this doctor! The way I understand it, if you have the celiac gene, eating gluten is a serious crap shoot. Even if you arent having symtpoms now, anything stressfull could bring it on. Furthermore, when I started reading about the blood tests they do for celiac, I read that they had been fine-tuned so they mostly will only be positive if you already have villi damage . .. which means they are less likely to show up positive if your primary symptoms are not intestinal. And finally, the tests are unreliable in small children.

If you have the celiac gene and you both feel better after the diet - congratulations, you have celiac. Some doctors are willing to dx on diet challenge alone. And if you already HAVE a dx on paper, what more do you stand to gain by doing the blood tests and the biopsy? Thats the only reason I've seen for people going back on gluten (for 6 monhts, mind you) before the biopsy, is that they want an officail diagnosis.

Congradulations on finding a way to make you and your baby healthy . . . now you just need to work at making it automatic and get a system down to make it easy.

ptkds Community Regular
ptkds
Posted

If I remember right, your dd got the DHQ1 gene from someone. If you only carry the DHQ2 gene, she probably got it from her dad. I am not 100% sure about that, but others on here know more about it than me.

As for not being sure about keeping your son on the diet, just remind yourself of how horrible he felt before going gluten-free. You can also challenge him by giving him a cookie or something w/ gluten and see what the reaction is. My dd go a hold of a pretzel last Sunday, and we knew by Tuesday that she had been glutened. Her diarrhea was horrible, and she got all red in the diaper area. That was enough proof for us (even though we didn't need any more proof!)

Good luck and keep up the good work!

katifer Apprentice
katifer
Posted
  • Author

thanks so much!! We really are doing sooooo much better--yes our doctor is great --so if anyone needs one in Tallahassee, Fl. John Ness is a great family practice doctor:)--thanks again!

horsesjapan Apprentice
horsesjapan
Posted

What type of allergy tests were done? I was positive on the IgG to gliadin, but the IgE to wheat (not sure exactly what they check on that one, is it gluten, gliadin, something else? Dont' know!) was negative. Both were blood tests. My 7 yo ds was negative on all IgE blood RAST tests but tested + on the IgG tests for wheat, egg white, dairy, soy, and malt. He's also reacted to barley (no big surprise due to the malt test) and spelt (contains gluten). I assume your doc ordered an allergy test that corresponds to celiac, and not the IgE test.

Nancy

Ursa Major Collaborator
Ursa Major
Posted

You've got a good doctor, I wished all doctors were as smart as him. Is your three-year-old on the gluten-free diet as well?

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jerseyangel Proficient
jerseyangel
Posted

As a fellow DQ2 who has had symptoms since childhood, but not diagnosed until the age of 49, I say that your doctor is very smart and going gluten-free now is the best thing you can do for your child--and you :)

nora-n Rookie
nora-n
Posted

There are several DQ1 celiacs on the forums, and there are some that are very gluten-sensitive without the diagnosis. If you search for Dr.Hadjivassiliou's research on the net, then you can notice that about 20% og the gluten ataxia patients are DQ1.

nora

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